(DoB 24/3/52)
1980 to …? – (not until I’m ready!)
1980
In 1980, I married my husband David. I frequently revisit this opening
line in My Story as the years pass and, to this day, I can still say it is a
secure and happy marriage. So some things in life are good!
1983
I was diagnosed with IDDM (diabetes). My first autoimmune disease! Three cheers
for endless injections and a lifetime of strict dietary control (supposedly).
1989
We applied to adopt. We were feeling very brave, I suppose. Late 30 somethings
and mucky nappies (if we get 'em young enough). Should be interesting…
1991
I began experiencing a strange tightness in my upper abdomen. I put it down
to the stress of the almost weekly interrogation during the adoption process,
not made any easier by David's determination to be (very) Bolshie in the face
of what he considered was little short of the Spanish Inquisition. He just couldn’t
stand the incredible intrusion although he did understand it was (sort of) necessary,
if only because of the rules and regulations surrounding adoption. But even
dear old Torquemada can't have been that bad, could he?
1993
Despite Dave, we successfully adopted two children: Eloise (aged three)
and Christopher (17 months). I gave up my job as a practice nurse to be a mother
and kept woman by a poorly paid journalist. Our lives are disrupted forever,
but utterly complete...except for the nagging, endless abdominal tightness that,
at times, led to hyperventilating. I was also becoming increasingly anxious
about things that were of no importance (nothing new there, said David). I visited
my doctor and underwent several tests, all of which came back negative. Curious
and puzzling. I then began experiencing lower back pain. Another visit to my
doctor and a referral to an orthopaedic consultant again revealed nothing. Curious,
puzzling and a little disconcerting.
1993-1996
Time passed and more symptoms manifested themselves. My movements were becoming
more and more limited; sounds, touch — anything unexpected kept making
me jump like someone had plugged me into a high voltage socket. I also developed
an irrational fear of crossing the road. Surely not a reaction to endless jokes
about "why did the…?” I also found I could not bend to cut
my toenails, put on socks or fasten my shoes because of hyperlordosis (inward
curvature of the lumbar spine). My neck, back and left leg kept stiffening up.
When Chris started school, I could walk across the playground to take him into
his classroom, but it was getting more difficult to walk back alone. My back
ached constantly and my feet did not seem to want to go where I was pointing
them. What on earth was wrong?
I even began to find socialising difficult and started to run out of excuses as to why I couldn’t ‘make it’. It seemed so much worse and that much harder for people to understand because I had been an active member of our local theatre group, and as a member of Junior Chamber I had given talks about my hometown to JC members in Holland and France. I was the one who could ride, swim and dance the night away (though not usually all at the same time).
None of us could understand why my GP couldn't find anything wrong. Neither could the poor old doctor who was as stumped as a man who couldn't get any more stumped. The inevitable conclusion was that it was all in my head, and I was sent to see a psychologist. After three sessions, we all knew it was not going to achieve anything. I then began the rounds of alternative therapies like some poor down and out hunting for tab ends in the gutter — interminable and for little or no reward. In this case, we couldn't even find an empty fag packet. Bottom line: Nothing helped.
October 1997
During my latest trip to my still-stumped GP, he noticed there was a problem
with my left leg. He suspected diabetic neuropathy and my always-on-the-ball
and ever-wonderful diabetic consultant, Dr Chris Walton, arranged for me to
see a neurologist the following week. After his initial examination, he told
me I was presenting with a condition called Stiff Man Syndrome. But he also
said it was unlikely because it was so rare and in all his years as a neurologist,
he had never actually seen a case before. As David and I left his room that
evening, somehow I knew, beyond doubt, that what he had suspected would be my
diagnosis, my life sentence. I had never felt so frightened in my entire life.
When we got home, I tried very hard to get drunk (not the most sensible and rational thing for a diabetic to do) but, despite my best efforts via copious quantities of any and all the booze I could lay my hands on, I remained stone cold sober. A judge would have been proud of me. Three days later I was admitted to hospital for numerous tests. A week later I was given my diagnosis. The anti-GAD results and electromyogram showed I was indeed suffering from SMS. My second autoimmune condition. What joy! A good pair at poker and my life was the stake.
At least I was relieved to know I was not going mad, but I was still hugely apprehensive of the unknown prognosis of this ridiculously named condition that most men would die for (if it were what they thought it would be, of course). I found myself asking questions in the third person. It could not be me we were discussing. I asked about the prognosis and was told the spasms would get worse until I was bed-bound. I asked what treatments were available and was given anti-depressants (but the only effect they had was to send my blood sugar sky high. Quel trade-off!).
The following day, David and I went to the library and read what was available
about SMS — not very much. We also looked on the Internet. We found that
diazepam kept coming up as the first line of treatment for the few SMS sufferers
who'd actually been diagnosed. I made another appointment with my neurologist
and asked him about diazepam, but for some reason, he was reluctant to prescribe
it. During the conversation, I realised David and I had obviously done far more
research into this condition than he had. It seemed like a case of the partially
sighted leading the blind. So I took the bull by the horns and, as politely
as I could (under the circumstances), insisted he let me try diazepam.
December 1997
I began taking diazepam on December 15, gradually upping the dosage to find
a comfortable level that bordered between symptom relief and narcolepsy. The
improvement was astonishing. By Christmas, I was almost my old self (perhaps
I am a little mad as I actually enjoyed shopping, preparing, cooking and entertaining
11 people over the holiday!).
Yet I still cannot believe all of this took four years to diagnose! Among other things we found on the net was the name of an SMS sufferer in Baltimore, USA. He was very helpful, and gave me the name of an SMS sufferer in England. It's almost impossible to describe the relief I felt to speak to someone else who understood what I was going through.
January 1998
It was suggested that I should see a psychiatrist to help me come to terms with,
and accept the fact, that I had the dreaded SMS. To be fair, my neurologist
(Alec Ming) was trying to do his best for me. I turned up for my first visit
and was greeted by the psychiatrist, a whisperer who seemed to think that if
he spoke in a normal voice we would be overheard. He also spoke very slowly.
Perhaps his battery needed charging. I would have offered to do it, but that
may have been a bit rude. Anyway, I had to keep saying “pardon?”
despite the fact I was leaning as far forward in the chair as I could without
falling off.
The 45-minute session ended (thank the Lord). As I got up to leave, he told me: “There will be no barrier between us when you come for your next visit”. When I asked what he meant, he replied: “The clipboard”. The look I gave him was one of utter disbelief. I was shocked and speechless (a first for me). I just said “OK”. The next session, a couple of weeks later, was no better. He had a trainee with him. I can’t remember what we talked about, but at the end of the session he asked if there was anything he could do for me. He was neither impressed, nor did he see the funny side of things, when I replied: “A bacon sandwich and a cup of coffee please.” It was then we both decided there was no point in continuing with the programme. As I left the hospital, I remember thinking the guy was as mad as a box of frogs.
February 1998
My neurologist asked me to go to the National Neurological Hospital in London.
I readily agreed as I thought I would be having further investigations, or perhaps
a second opinion. Progress — though to where I knew not. But it was still
progress. The downside — I had to stop taking diazepam, which made it
more difficult to travel as I had the spasms back, the anxiety and the stiffness.
When I got there, I was seen and paraded in front of a room full of trainee
doctors — and sent home! A 400-mile round-trip journey for nothing. I
just couldn't believe it. But at least I got (a brief) chance to discuss with
the neurologist my plans to form a support group. He (in front of the trainee
doctors) showed great interest and said he would forward my details to other
sufferers.
March 1998
I wrote to the neurologist in London to ask if he had made any progress. He
didn't even do me the courtesy of a reply.
April 1998
I wrote again. Again, no answer. Not a person to give up easily (ask the Jehovah's
Witnesses who called and ended up having to make excuses to leave), I asked
my original neurologist if he would look into it for me, which he did, and he
received a reply by telephone from a secretary saying they could not help. Dead
end. The Stiff Man has been stiffed! I decided to go it alone. I telephoned
Daran, who was the contact I had been given by the American sufferer, and he
gave me the names of three other SMS sufferers in England with whom he was in
touch. I wrote to them and they were all keen to belong to a group that could
share knowledge and the strange kind of bond between strangers that a support
group would bring.
May 1998
So, with just five members, the group was born and my newly acquired skill(!)
of newsletter writing began. I had heard of a hospital, St Bartholomew’s,
also in London, which was doing research into SMS. It was headed by Professor
David Leslie. Although primarily a diabetic centre, they had found similarities
with regard to GAD antibodies in diabetics and SMS patients. I contacted the
research nurse, Pam, and was asked to send a sample of blood to be used in their
research programme.
I discussed the support group with Pam and she was, and still is, keen and helpful. She gave my details to other SMS sufferers and the number of members began to creep up. Hardly a tidal wave of "new recruits" but it was one small step for Liz, one giant leap for awareness.
September 1998
Meanwhile, Dr Walton (bless him) continued to show a very keen interest in my
condition. He arranged for me to be videoed with and, a month later, without
diazepam. The aim of the exercise was to show doctors, consultants et al at the national diabetic conference what it's really like. But when I saw the video,
I was disappointed as, in my opinion, it just shows a middle-aged woman who
cannot walk very well. David didn't agree. He was utterly shocked — and
he'd had first hand experience of me "stiff man-ing around”, as he
likes to describe it in his typically uncharitable but well-meaning way.
Of course, the video had had to be edited to the minimum, but it does not show the sheer terror I was feeling, or reveal that I was dripping with perspiration, or how much I cried and shook. Nor does it show Dr Walton’s colleague taking me there — almost having to carry me. Nor does it show the look of concern and disbelief on Dr Walton’s face as the ordeal began. Perhaps they're all right and it's only me who doesn't get it because I've got it!
But at least there was one benefit — a vigilant nurse at the conference saw it and that led to the discovery of another new member for the support group. If, by showing the video, it helped anyone in any way, then it was worth doing it and, who knows, perhaps after seeing it a little bell may ring in the doctor’s head when a patient presents with symptoms of SMS, and an earlier diagnosis could then be made. At this point I have to say nothing on this earth would make me go through it again — apart from a guaranteed cure!
January 1999
I walked to the local supermarket with the children. Good grief — are
they really eight and 10 years old now? On the way back I fell. Despite wearing
thick clothing, I still managed to bruise my ribs, arm and hand. Fortunately,
a Good Samaritan helped me up, but I was too shaken to walk. I seemed to be
surrounded by people within a matter of moments. Two paper- boys took the children
home and a lady took me home in her car. People can be kind and considerate
after all.
February 1999
David has bought me a tricycle — £700! But it exercises my muscles.
I am quite fearful of walking alone as I am afraid of falling. There don’t
seem to be any warning signals when a fall is imminent and there is absolutely
nothing I can do to prevent it. My whole body goes rigid, and down I go. I suppose
that is why it is called Stiff Man Syndrome.
I am deviating now, but when Moersch and Woltmann discovered this condition in the 1950s and named it Stiff Man Syndrome, why do the politically correct core keep referring to it as Stiff Person Syndrome? Working on that premise, perhaps smallpox should be renamed vertically challenged pox, or chickenpox called fowlpox? German measles should be Euro measles. The list is endless. Political correctness, pointless form filling and endless red tape are anathema to me. Now I have that of my chest, I can continue my diary…
July 1999
Everyone who knows me, knows about my passion for music. My friend Vanessa and
I went to a local folk club to see Benny Gallagher. It was Vanessa's comment
after the show that really shook me. She said she had seen the 'old Liz' that
night. The Liz I used to be. It made me realise how 'down' I had been since
getting my diagnosis. Yes, I still went out, I still talked 50 to the dozen,
I still told my usual stupid jokes with the punchlines somewhere in the middle,
but I knew what she meant. I think I fell in love that night. I fell in love
with the atmosphere, the music and with the feeling of being me again. For a
time, at least.
I took the kids to Spain for a week (David was on his annual golf holiday/escape from Colditz). We stayed with Peter and Joyce (my stepmother) who have a house there. I don't know if it was the heat or the Med, but I managed to walk further than I might ever have expected — the fact that one has to keep up with "left right, left right" Peter may have had something to do with it. Anyway, I swam and even managed to dive into their swimming pool, and I have the photos to prove it. We went to midnight firework displays, aqua-parks and festivals. It all seemed so completely normal. There weren't even any ill effects from the daily exertions, apart from a few aches and pains. Remission is wonderful — winning the lottery can't be better (though it would be nice to compare…).
August 1999
My next quest was to register my name with the Council for Voluntary Services,
a charitable organisation operating in the UK (different regions in Britain
have similar organisations, and are known by a different name, but are the same
kind of set-up). They have a list of charities, help/support groups and other
organisations. Basically, what happens is if you have an illness or are the
victim of any kind, the chances are that the CVS will be able to give out a
contact name and telephone number.
David has bought many things to aid my mobility, the most expensive item being a tricycle, which was very useful — until I went into spasm while riding it. I was too fearful of a repeat occurrence, so bye bye bike. Never mind, it was very heavy — especially when Christopher was sitting on the back, the lazy lump.
February 2000
I was interviewed by our local newspaper and, through that article, found two
more sufferers locally.
March 2000
I heard from a member of the group about a neurologist who practices in West
Yorkshire. He has a greater knowledge and interest in SMS than my original neurologist.
I am fortunate now to be under his care. He has started me on Baclofen. So perhaps
I am one of the lucky ones as I have two very caring consultants looking after
me. I also have a very supportive network of family, friends and neighbours.
May 2000
I took the children to the seaside. I was fine driving there, but when I got
out of the car the stiffness started. Eloise held my hand and, with the help
of my walking stick, we struggled on to the promenade. By the time we got to the ice-cream
shop I found it difficult to sit down because by then my back and left leg were
in spasm. I told the kids to go and choose what they wanted, hoping that by
the time they came back my body would have calmed down. Fortunately it did,
but I was still very stiff.
While walking back, I held onto the rail at the edge of the promenade. Unfortunately, I couldn’t let go — even when an elderly lady approached holding onto the same rail. Poor woman — she had to walk around me! So much for consideration for senior citizens (I hope she realised I had no choice…).
The children wanted to go on the beach, so after I found a seat they helped me to sit down and off they went. After about half-an-hour I was getting cold and wanted to go, but I couldn’t attract the children’s attention and certainly couldn’t get down the steps to the beach. I just wanted to cry. When they came back we managed (slowly) to stagger back to the car, and finally I began to relax in the comfort of my four-wheeled cocoon. Strange how being in the car is so reassuring — almost like shutting out the real world.
We arrived home and I told them they could watch TV. I began to prepare our evening meal and then the tears started to flow. And flow. We were in danger of drowning! The kids have never seen me cry (except when watching soppy films) so I told them it was the onions. Lame excuse, but the best I could manage through blotchy eyes and tear-stained cheeks. I must have looked a real sight.
When David came home I told him about the day and the tears started yet again. That evening I cried solidly for about two hours and went to bed absolutely shattered at about 8.30pm. I felt such a useless wife and mother and a burden to everyone. That was the first time — and will be the last — that I feel so sorry for myself. I hope…
June 2000
The latest and most frightening episode happened a few days ago. I was getting
in the shower as Eloise was getting out and I began to stiffen up. Christopher
got in too. I managed to help him a little, but my back went into spasm and,
with his help, I got onto my knees and waited for the spasm to ease. It was
then I realised I couldn’t get up. I was completely rigid. I panicked
and started to hyperventilate.
Eloise, who despite her youth, is as able to care and soothe as well as an adult, said: “Mum, breathe slowly, nothing will happen to you while I’m here”. Such maturity. She put her arm around me and gently massaged my back (at the same time ordering Christopher to pass a towel to keep me warm). I calmed down a bit and thought it might be a good idea to try and get one leg over the side of the bath — not a good idea as it sent me into spasm again. At this point I realised I needed reinforcements and Christopher telephoned Isobel, a long-standing friend who lives just around the corner. Like a one woman Seventh Cavalry, Isobel charged to the rescue and I was duly lifted out of the bath, dried and dressed.
July 2000
Report in the Lancet: 50% of SMS sufferers are also type 1 diabetics. Interesting.
We all went on holiday to Spain. I was so sure I would have been able to do the things I did last year, but I had not really given a thought to the fact that SMS is a progressive illness, and it was a year since I had been abroad. I spent a lot of the time holding onto David and, on a couple of occasions, found it very difficult to get down to breakfast. I wonder if we will ever be able to go abroad again?
August 2000
Interviewed for a magazine called Best. I was very disappointed with the article.
Apart from anything else, they did not include the support group telephone number.
They did, however (to their credit), print my letter in the "You tell
us" page in November, giving the details they had not printed in the original
article. I received quite a number of calls from potential SMS sufferers.
Window cleaning day and it was very hot. I asked the guys if they would like a cold drink. When they had finished, they brought the glasses to the door and we chatted for a while. Then I felt my back starting to spasm. Here we go again. I was holding the glasses in the crook of my arm and grabbing the wall with the other hand, trying to appear 'normal'. After they had gone, my back and left leg were so rigid I could not move. I tried to work out a plan of action but soon realised I couldn't. If I dropped the glasses I would have both hands free enabling me to grab hold of the door handle, get down on my knees and crawl to the living room. That would not have been a good idea as I was bare footed, so I would have either suffered a broken toe or would have been crawling on broken glass. So many choices! Anyway, this particular story had a happy ending as a neighbour chose that very moment to pop in and rescue me.
October 2000
Interviewed by The Daily Mail. I told them I did not want to take part in a
tacky article and stressed the link with Type 1 diabetes and the importance
of printing the support group telephone number. They agreed. They also interviewed
my neurologist. They even took some fantastic pictures that made me look young
and beautiful — David must have been impressed because he got hold of
some prints and had the best one framed. I was inundated with calls from SMS
sufferers and potential sufferers after the article appeared. I even received
calls from total strangers, ringing to wish me luck. Such is the power of the
Press (David's a journalist and kept telling me so, but until then I didn't
really believe it).
I now have 22 members in the group. Some are in a more advanced stage of the illness, but we all share a sense of humour which helps us cope with our relatively unknown illness (I could write reams about the amusing things my family and friends say and do to me, but that’s another story). There are many anecdotes and there have been times when it all seems so unfair but, as they say, "c'est la vie".
November 2000
I had a call from the TV programme "This Morning" asking if I would
appear on the show (they had read the article in The Daily Mail). Great news!
More exposure! It was scheduled for Wednesday. But, to cut a long story short,
they cancelled two weeks in a row because there were more pressing items which
they wanted to cover — one of them being the whatever anniversary of Coronation
Street. It was no contest and I had to admit the pulling power of Corrie was
(marginally) greater than a little known disease with a funny peculiar name.
They said they would get back in touch with me, but they never have. One day,
perhaps.
Interviewed by The Sunday Post, a Scottish newspaper. They are not going to publish until the New Year because they want a time lapse because it's it been in The Daily Mail. Fingers crossed that it will appear and that I will again get a good response.
I was called by a London based radio station and asked if I would talk about
SMS (do I need to be asked?). Naturally I said yes. Then the bombshell —
they would call at 12.30 tomorrow and I would be live on-air! I had no idea
what questions they would ask, and sat half the night writing notes. I spent
the morning praying they wouldn’t ask me a question to which I would not
know the answer. At 12.15, and panic looming, I hit the gin!
It must be a legacy from my days in local amateur dramatics because when the
‘phone rang, my nerves vanished. I had wondered how I could possibly talk
on air for 10 minutes, but I did. Unfortunately, I didn’t receive any
calls, but as I had never heard of the station, it’s reasonable to assume
they don’t reach a very wide audience. Still, it’s all practice
for me in my quest to raise awareness and to find other sufferers.
December 2000
Claire, a group member was interviewed by Woman magazine. Once more, I received
a lot of calls.
I saw Dr Walton for my usual diabetic check and I was feeling particularly
low. December is a hectic time for anyone, but I was feeling so anxious (anxiety
is a major part of SMS), and wasn’t sure if I could cope with organising
Christopher’s birthday, the run up to Christmas and the New Year party,
which everyone takes for granted we will host. I must say that physically I
probably do less than everyone else involved (pretty good, eh?). Perhaps I should
relax and say yes when someone offers to help, but my stubborn nature always
seems to take over and I end up anxious and stiff. I suppose I should be happy,
and I am, that people actually want to spend their time here with us rather
than elsewhere. As usual, I am deviating from the point of this paragraph. Dr
Walton is referring me to a medical consultant specialising in disabilities.
I am not sure where this will lead.
January 2001
I wrote to Balance (a bi-monthly magazine for sufferers of diabetes) to encourage
them to write an article for their magazine. They seemed a bit perplexed and
said they had never heard of it. But at least they didn't say no.
I am now only able to get to my car with the help of a three-wheeled walker (I asked if it was available in British Racing Green, thinking I would be able to go faster, but it wasn’t, and I can’t). My symptoms seem to be snowballing, but not everyone with SMS is the same. Some people have had it for years and are not as bad as me, and the opposite also applies.
February 2001
I had a call from Pam (Professor Leslie's research nurse). The British Neurological
Surveillance Unit is contacting all neurologists to ask for details of any SMS
patients they have. It would seem the research programme is moving forward again.
March 2001
Stephanie, a group member, was interviewed for Chat magazine. She was not happy
with the result. Quite a lot of what was printed, she claims, she did not say,
and to top it off they put in her telephone number instead of mine. So all of
the calls she received had to be redirected.
I saw my neurologist and he suggested I alter my medication as the stiffness was affecting me more than the spasms. I have increased the Baclofen and slightly decreased the diazepam. Too much of either makes me drowsy.
Two weeks later I was seen by a consultant at a local hospital for people with physical disabilities. This was a referral made by Dr Walton, whom I had seen in December when I was feeling very low and the stiffness was particularly bad. I was seen and examined by his registrar and, as is always the case, I had to explain what SMS is. He was a pleasant young man and appeared very interested. He spoke to my consultant, who then came in to see me. He prescribed Tizanadine (a second line treatment). I have not, as yet, had the prescription filled. I have a gut feeling that on top of diazepam and Baclofen I am going to end up like a zombie from one of those awful but laughable Hollywood B-movies. Others might find it amusing, but not this time. I have written to my neurologist for his opinion. He has advised me to try it. The only drawback is that I have to have liver function tests done every four weeks. Still, if it helps, I don’t mind.
I have written begging letters to Richard Branson, Chris Tarrant and Chris Evans for help to run the group. I received very nice replies from both Richard Branson and Chris Tarrant, but sadly the answer was no. Chris Evans was probably too busy with Geri…
May 2001
I have been taking Tizanadine for four weeks now. I am taking 2mg qid, and will
have my first liver function test later this week. The test result turned out
OK, thank the lord.
I wrote to Dr Peter Brown at the National Neurological Hospital in London asking if he would put together an "idiot's" guide to SMS for new members — something that would be easy to understand. He duly sent an information sheet that has been very useful as it is to the point and, as requested, easy to read.
June 2001
Have had a few scary incidents all involving spasms and stiffness. Trying to
leave the supermarket, I had to be taken to my car, this time in a wheelchair.
I had been fine while shopping, but as soon as I got outside I just could not
walk. The trolley man has helped me in the past. With the help of Christopher,
his friend, the trolley man and a wheelchair I got back to the car. I was too
frightened to feel embarrassed or to even be aware of anyone seeing me in such
an undignified state.
The following week the children and I went to a local garden centre. I managed to get to the door but could not walk around inside. I told one of the staff what I wanted and after he got a seat for me, he went to get my order. I managed to walk outside, but could not get as far as the car. I asked a passer-by if I could 'borrow' his arm to get to the car. He obliged and told me he was an ambulance driver. It still surprises me how kind and helpful strangers can be.
Sunday Post (June 3rd) have published the interview I did last year. I have had quite a lot of calls. Two of them have already been diagnosed with SMS.
Last night I was very stiff, and having got into the bath, my back decided to go into spasm yet again. It didn't last long, but left me feeling stiffer and more anxious. I could not lie down and had to sit like a small child while David washed my hair and helped me out of the bath. I managed to dry myself in between the children coming in and out, asking questions. Christopher: "Mum, can Adam sleep here tonight?" Eloise (aged 11): "Mum, do you think I should start shaving my legs?"
As I was sitting on the bathroom floor (not exactly 'fur coat and no knickers', but certainly pyjama top and no bottoms) trying to relax enough to get up, Christopher jumped into the bath, and I was wet again. Eloise preened herself in front of the mirror while doing her impersonation of Britney Spears. It is at times like this that I realise how accepting and resilient children are. They knew I was having problems, but also knew if I needed help I would ask. Otherwise, they just get on with what they are doing.
I could hear David talking to my brother and sister-in-law and then footsteps coming upstairs. My brother walked in and I shrieked "Get out”. I don't know who was most shocked — him or me. It was becoming more like a Brian Rix farce by the minute. I called to Sue, my sister-in-law. She came up and helped me put on my pyjama bottoms, went back downstairs and returned with two glasses of wine (both for me). By the time the children had finished in the bathroom and Sue and I had emptied our glasses (so they weren't both for me after all), all I could do was laugh at the events of the last 45 minutes. It had gone from the ridiculous to the sublime!
There have been many upsetting incidents and many funny ones. For instance, when one sees a 40-something woman walking across the road with an 80-something man, one assumes it is the former helping the latter! It is at times like that when I have a quiet giggle to myself.
August 2001
School holidays. We didn't go abroad as I knew I would not be able to walk any
distance, so we had the old fashioned 'days out'. Unfortunately, every day ended
up with me needing help. Fortunately the kids accept this as the norm, but although
David is helpful and understanding, he must feel as frustrated as I do, as I
can be relatively OK one minute and in spasm the next. Therefore, there is anxiety
on both sides. Not surprisingly, I suppose, it’s getting harder for any
of us to keep seeing the funny side these days.
October 2001
I have been in touch with Diabetes UK. I sent them a copy of Dr Brown's information
sheet. They told me SMS information is now available on their help line, although
I haven't checked it out as yet. I have also been in touch with Balance again.
I was told they prepare months in advance, therefore it may be some time before
they can do anything.
November 2001
Saw my consultant for people with physical disabilities. I am now taking 2mg
of Tizanadine qid. Still a relatively small dose, but I am feeling stiffer than
when I began taking them. He advised me to decrease the dosage with a view to
stopping altogether, which I am doing. He is also referring me for a wheelchair.
December 2001
I am now free of Tizanadine, but as it is the Christmas period, I don't imagine
I will be able to assess how it will affect me for a while yet. Christmas was
better than I expected this year. Perhaps it was because I began the preparations
and got things organised well in advance. It made it much easier catering for
the masses, as most things just needed to be taken out of the freezer.
Ken, a group member, has had his story published in his local paper. The headline read ‘The summer before this happened I climbed Snowden. Now when I go out I have a wheelchair’.
January 2002
I have been assessed for a wheelchair, and it has arrived. Why am I so pleased?
Anyway, it folds up and will fit in the back of the car. It is not as easy to
use as I thought it would be. It's OK on the flat, but even a slight incline
is difficult. Still, as I don't go out alone there is always someone to push
it. Wheelchair Olympics next!
I was right about the Tizanadine. I don't feel I am as stiff as I was when I was taking it. Unfortunately, that does not mean I don't get stiff anymore. Ho hum.
I have been working at home as a volunteer for a local charity, APPD (Association for People with Physical Disabilities). They have published an article I wrote for them about SMS, which led on to finding another new member for the group.
February 2002
Via the CVS we now have charitable status. Hurrah! I and other members of the
group are trying to raise money, for research. So far I have only written (again)
to Richard Branson. It's tiring work trying to write begging letters. Sadly,
I received (yet another) "Sorry, but no" from Sir Richard. It makes
me wonder a) what am I doing wrong and b) is our illness too rare for anyone
to care about?
I saw Dr Walton. He told me I now have hypothyroidism (third autoimmune disease — how lucky am I?). I am now taking thyroxin 50mcg daily.
March 2002
I received a call from a new sufferer, Jane. I spoke at length with
both her and her husband, Clive. She wanted to join the group and be part of
the research programme at Barts hospital. I (as I always do with new members)
sent her copies of all past newsletters and informed Barts. On Sunday 31st I
got a call from Clive informing me that Jane had died the day before. She was
just 42. She is the second member of the group who has died since I began running
the support group. How very, very sad. I must say here and now, though, that
neither death was directly SMS related but that took nothing away from the grief
everyone felt.
I was talking to Howard, a group member. The subject of birthdays came up and I told him it was my 50th on March 24. I was astounded to receive a beautiful bouquet of flowers delivered from Jersey. Having said that, I still get a warm feeling inside whenever I get letters or cards from members showing their appreciation. It lifts my spirits and keeps my determination at full strength.
April 2002
I received a call from Jane's undertaker stating that Clive had asked for no
flowers, but instead wanted donations to SMS research. What a kind gesture, especially as, after all, we had never met and only spoken on the 'phone twice.
Christopher's friend Adam came for a sleepover. By 9.30pm I was finishing off my Uni exam paper, which had to be handed in the next day. Eloise, Christopher and Adam were charging about as kids do — despite my yelling at them to be quiet. 10.20pm and the telephone rang but I really could not afford the time to talk. However, the caller was determined and kept on talking. 10.35pm and I saw Christopher walk past the office and up to the loft with a bottle of Jiff in his hand. Hmmm. Alarm bells ringing? You bet. I went up to find the room full of boxes of toys, books etc, and three children scrubbing the floor where they had spilled some 'won't come out, no matter how much you try' ink. It was the last straw, I yelled at them for making such a mess, for spilling the ink, for making such a noise when I was trying to work (and anything else I could think of)! What they didn't tell me was why they had taken everything up there, but it became (embarrassingly) apparent the next day...
I had told the kids a few days earlier that although the group had achieved charitable status, there was no point in me opening a bank account as there was nothing to put in it. It seems they were listening…next thing I know they had sorted through their toys and books and were determined to hold a car boot sale in the garden! They made posters and stuck them to lampposts advertising their tabletop sale, to be held that day and the next, in aid of the SMS charity. I only found out what they were doing when I saw the garden furniture being moved into the front garden. Five minutes after they had started, Christopher came running in to tell me they had made £5.50.
Apparently, he had stopped a passing car and asked the poor woman to buy something (I wonder who he gets that cheek from? Not me, obviously). The kids asked for a volunteer to sit and have a wet sponge thrown at them (10p for four throws). Nobody was forthcoming so Christopher was volunteered. He sat on a chair in his swimming trunks and goggles and quite enjoyed the experience. I felt so proud of what they had instigated and of the way thy got other local children involved, I had to do something to thank them. I rang the Hull Daily Mail, gave them the story and they sent a photographer round the next day.
The story was published, but there were so many errors that I rang the paper to complain. Fortunately, I knew the reporter whose name was attributed to the article (even though she had not written it). She said that if enough interest were shown in the article she would do a follow-up story. Naturally I 'phoned all members living in the area the newspaper covered and asked them to ring the Mail demanding more information! The following day I got a call saying the Mail would like to do a follow-up story — bingo!
I also received a call from a woman telling me she thought her horse (of all things!) might be suffering from SMS. I felt sure it was a wind-up, but in fact it wasn't. I rang Barts hospital to tell Pam about it and she told me that there is an equine form of SMS. The spooky thing is that she and Professor Leslie had been discussing it less than two weeks previously.
Late one afternoon and I was on my way to have a shower and walked along the landing. As I reached the top of the stairs, the usual feelings of anxiety started. Why can I walk along the landing and feel safe, but as soon as there is a gap (the staircase) I feel so vulnerable? I held onto the newel post for support. The top airing cupboard door, which is at the other side of the stairs was open, I took hold of it, but stupidly grabbed the handle, which is quite high up. Standing facing the top of the stairs with my arms in a five-to-three position meant I could not move. The only thing that was moving was my back. It was in spasm. It felt like someone kept taking penalty shots (my back being the goal). And nobody was due home for at least an hour.
I tried to keep calm by listening to, and answering questions out loud, to The Weakest Link, which was on in the kitchen downstairs. I knew I had to do something, as my left arm was beginning to get pins and needles, but what? The upstairs windows were open, so I started to shout for help. It started with a whisper, because I felt embarrassed and have never shouted for help before, but it ended with decibels normally associated with a rock concert. Deep Purple eat your hearts out! Unfortunately (surprisingly) no one heard me. Eventually the spasms eased and I began to calm down enough to shuffle my feet to the left and slowly move my right hand onto the airing cupboard door. I then collapsed onto the floor. Thank God I was now safe. I looked at my watch and realised I had been stuck for 45 minutes. It had seemed like an eternity.
I went to the Playhouse in Beverley last night, one of my favourite venues to see live music. Barry Nettleton (the owner) said he had read the latest article in the local paper and offered me the use of the Playhouse to raise money for SMS. I couldn't believe it. So, I now have the task of finding a selection of bands to play (another Everest to climb). Sadly, it never came to fruition as he had been drinking when he made the offer, and when I approached him a short time afterwards he couldn’t remember having said anything. *******!!!!!!!!
I went to Morrisons supermarket with Christopher. My back was quite painful but I thought I could manage. We hadn't got very far when I realised I could not walk another step, and had to ask for a wheelchair. The staff were really helpful. One of the assistants got the rest of my shopping, helped me through the till and took me to the car. She loaded up the car and helped me in. I have been 'wheelchaired' to the car on a few occasions in the past, but I have never had to use it inside the supermarket before.
It has been one of those days today. I was late for my art class this morning, which made me anxious (anxiety about things which are not really of any importance, is, as I have mentioned before, one of the symptoms of SMS). I think the anxiety decided it may as well give me grief for the rest of the day, and just for good measure the spasms and stiffness thought they would join in. So, in a nutshell it's been quite a naff day.
May 2002
I rang the council to ask about the dos and don'ts of charity fundraising in
Beverley. I also asked if the Jubilee weekend was free. I could not believe
it when they told me it was. So I have both days — the Sunday and Monday!
I have bought mini dustbins from the local cheapo shop to be used as receptacles
for all the cash the thousands of willing givers are going to donate, and Tony
(a group member) is making the labels to put on the bins and flyers to hand
out. The great thing is there is so much going on in Beverley on those two days,
so hopefully there will be a lot of people around. I 'phoned the local radio
to ask for volunteers. The local paper have printed three articles about SMS,
to help raise awareness and to publicise the charity event. I am going through
my address book to find as many people as I can to help. I have managed to borrow
collection tins, draw up a rota for the volunteers, get a parking permit, and
put in place all the little things which would enable me to go ahead. It must
have seemed like a shark feeding frenzy to my family and other animals!
At last the Jubilee weekend arrived and I nervously approached the market place, praying for the stamina to enable me to get through two days in a wheelchair. Fortunately, the weather was very kind on Day One, as were the football fans as they came out of the pubs — England had just drawn with Sweden. Most of them, at least — two worse-for-wear thirty-somethings suggested I was a poor person and should indulge in sex and travel. No further explanation of this euphemism is necessary.
Everyone else seemed to be enjoying the entertainment, particularly the highlight of the day — The Backbeat Beatles. Some time ago I saw them play, and promised them a chocolate cake when they next came to town. When I gave it to them, I also asked if they would give the charity a mention, which they did, and at one point even paused during the gig, saying they would continue when more people had put money into the charity tins. It worked!
I have a confession to make here. I had a bottle of red wine tucked down the side of my wheelchair. As a result of partaking in a few sips, I found myself much more relaxed and chatty. Actually, forget the chatty bit, as I never need anything to help me talk. Anyway, there I was sitting in my wheelchair listening to the Backbeat Beatles when a guy asked me if I would like to dance. Of course I said yes, but told him he must not let go of me or I would fall. So he lifted me up (in quite an ungainly fashion) and danced/pranced around for the duration of two songs. It was only when I saw David’s face as he was talking to my GP that I sobered up very quickly. After all, I am supposed to be disabled! Anyway, I behaved myself for the rest of the day. Up to this point, I bet you all thought I was a little more demure. Well, it just goes to show, even disabled people can make a complete fool of themselves sometimes. And why not.
The following day it rained almost non-stop and, unfortunately, those brave few who turned out were the same lot from the day before — which meant they had already given. At least, that was their excuse... Nonetheless, it was great fun overall, but I'm not sure I would undertake such an event again in a hurry. We raised a very creditable total of £543 — not bad for a first event. We certainly earned it. The charity will use the money to help to continue to raise awareness of SMS. The local paper wrote a small piece about the event, but thankfully made no mention of my antics…
Nothing I have achieved since 1998 would have been possible without the help and support of my husband who has patiently and (usually) willingly got stuck in whenever needed. He may love his car (a Subaru Impreza Turbo) and his dog Ollie more than his wife and kids, but he does a reasonably good job of hiding it…
June 2002
I have sent out the latest newsletter and a questionnaire and now I am going
to have a rest for a while.
Why did I say that? I believe it was just wishful thinking as I'm meeting myself coming back. I got a call from a newspaper to confirm details about an article which Claire, another member of the group, was having published. Surprisingly they 'phoned me back and read me the copy. Thank heavens they did, as they had quoted me saying something that would have had the medical profession coming down on me like a ton of bricks. It just goes to show, it's not what you say, it's the way you say it, and of course the written word does not allow for that. So for a number of days there were 'phone calls backwards and forwards until things were put right/write.
Two more calls from medical information centres asking for any further details about SMS and the support group. It must be New Year at the information collectors' offices.
I have contacted Balance several times over the last two years, urging them to print an article about SMS (after all, 50% of SMS sufferers are type 1 diabetics), only to be told they plan months in advance etc etc etc. So, when I rang them this time, I asked to be put through to the editor. I told him I would make him a chocolate cake — with a cherry on the top — if he would oblige me in my quest for raising awareness. Guess what? Four pages in the next edition. Poor guy, I never did send him the cake.
Tony has set up a web site for SMS sufferers. I can't take any credit for that at all. In the words of the song by Shaggy, "it wasn't me". The only problem is the amount of emails I am receiving from abroad. Although I answer them, I never feel I am of much help. However, on the upside we have gained a few new group members. For anyone in the US reading this, there are four email addresses you could try. They are: stiffperson@comcast.net, stiffman@gurr.org, sms@stiffman.com and owner@stiffman.net
July 2002
I approached a shopping centre to ask if we could organise a charity collecting
day. They told me they did not allow it, but that the money people throw into
their wishing well is donated to charity. I was able to collect said money the
following week. It was much quicker to drive nine miles, collect the bags and
drive home again than it was counting it. Armed with a pair of Marigold gloves,
I began picking out the bits of grit and chewing gum (urgh!). We got over £200.
Not a bad result.
August 2002
I had a call from a guy in London who had seen the article in Balance. I don't
know why he was reading it (perhaps he was in a GPs waiting room and all the
motoring magazines had disappeared). He was working in London, but was from
New Zealand, and his mum (Margaret) is an SMS sufferer. I sent him the usual
information, which he forwarded to her. A couple of weeks later I got a call
from her. She knew of no other sufferers. We are going to keep in touch. It
made me think — I don't know of any other country in which a support group
exists. At some point in the future I will ask Tony if he can ask that question
on our web site.
I have received the answers to the questionnaires I sent out in the last newsletter.
There were 35 replies and the results, which may be of interest to anyone logging
on to this site, are as follows:
The average age when diagnosis is made: 48.
Length of wait for diagnosis: Average is 4 years.
Of those originally misdiagnosed, depression (or variants of) was by far the
most common answer.
SMS medication: Most people take Baclofen (20), closely followed by diazepam
(17). Gabapentin (Neurontin) (6) and Rivotril (Clonazepam) (7) were the main
others.
14 members are type 1 diabetics.
Eight diabetics said they felt stiffer when their blood sugar is high.
Ten people said they knew of other family members who also have an autoimmune
condition (I would hazard a guess that the figure may be higher, as not everyone
knows if a particular condition is autoimmune).
November 2002
I had a call from the CVS. They are the organisation who let us use their charity
number. I was advised that in order to satisfy the Charity Commission requirements,
we should form a committee and draw up a constitution. As a complete novice,
this is probably the most daunting task to date.
OK, I am now going to take the break I said I would take back in June.
December 2002
Nothing to report, apart from the usual 'phone calls, form filling etc.
January 2003
We now have 56 members in the group. I had a call from NHS Direct. They wanted
me to send information about SMS. I was a bit puzzled as I had already sent
them everything I had. What I did not realise is that they do not operate from
a central body. Apparently they are in the process of centralising their database
so when I provide them with info in the future, it will be available throughout
the country.
April 2003
We have applied for charitable status in our own right. I am hoping like a person
who has hope at the top of her list, that this will give us the credibility
we deserve.
May 2003
It’s funny where a simple conversation can lead. I was speaking to someone
who used to work for a pharmaceutical company called Pfizer. He suggested I
write and ask for a donation. To cut a long story short, I did, and they sent
one. They also told me about the Neuropathy Trust. I wrote to them and they
published an article in their magazine ‘Relay.’ No photograph this
time — shame really, I quite like posing.
We have just had our living room papered by a so-called professional — I will say no more on that particular disaster, except I know I would have made a better job in the days when I could climb up steps, lean over to one side with a cloth in one pocket, a pair of scissors in another, brush in one hand and a strip of wallpaper in the other.
Anyway, I washed the curtains and spent heaven knows how long on the floor ironing them and the linings (12ft long patio doors). That bit was easy because when I am on the floor there is nowhere to fall. The fun started when I tried to hang them up. I had managed one curtain and had almost finished the second. I knew I was stiffening up, but thought “just this last bit and then I’ve finished.” However, my back realised this was a chance to give me some grief. Somehow it knew there was nobody about to come home, or visit, so it knew it could do what it does best. Oh good, it thought, she hasn’t got her ‘phone in her pocket as she usually does, so let’s get going, I was standing on the second rung of the stepladders and had my right hand on the curtain rail.
My back went into spasm, and there I was — stuck! I was only about a foot from the floor. I thought about just letting go and falling to the floor, but I knew if I did that my body would go into spasm. I thought about putting both hands on the rail in the hope my weight would bend the rail enough to enable my feet to touch the floor. However, knowing my luck it would probably have snapped, and I would have fallen into the conservatory and crushed my beloved tortoise, George. If only the conservatory door had been closed I could have reached the handle.
The ‘phone rang twice while I was perched like an enormous upside down parrot (minus the beak). Actually, I looked nothing like a parrot, more like a complete idiot, who should have known better! I managed to knock the ‘phone off its cradle with my foot. I felt sure I could have used my toes to ‘phone someone, but no, it fell to the floor. Fortunately, the spasms eased quite quickly, but somehow I could not let go of the rail. Anyway, I don’t know how long I was up there, but it was somewhere between reading the Sun and doing a 2000 piece jigsaw puzzle. The first thing I did when I got down was to pour myself a large vodka — and it tasted good and did me good.
July 2003
Subscribed to a new enterprise called GP Surgeries’ Healthcare Guide.
A half page entry. It is to be distributed to surgeries in Northern Ireland.
Let’s hope the £200 it cost will bring us some new members. Apart
from anything, the Irish are (in my opinion) an amusing lot. David went on a
golfing holiday to Southern Ireland two or three years ago. He came back with
some funny stories, eg driving down a road towards a junction there were road
markings: The first one said “Slow”; a few yards further it said
“Slower.” Another day the six of them decided to go for a pint.
Having driven around in circles (there were no signposts) they found a pub.
They tried the door, but it was locked. A moment later the landlord came to
the door and informed them the pub didn’t open until six o’clock,
and then said: “Come in and have a drink while you wait.” There
are lots more tales to tell, but this is meant to be a diary about life with
SMS — so if you want any more you will have to give me a call.
September 2003
We have confirmation that we are now a registered charity: ‘Stiff Man
Syndrome Support Group’. Registered Charity number: 1099206.
Another member, Melanie, had her story published in a magazine called Take a Break. Unfortunately, the support group details were not included.
March 2004
Well, that was certainly a long break! Having said that, the only thing I have
been remiss about is updating my diary. There is rarely a day goes by that does
not involve something to do with SMS. In fact, when I think about it, I work
harder now than I did when I was nursing. I don’t mind — but I do
miss the salary…
The East Riding Carers Support Service has published an article about SMS.
I am still puzzled as to why. After all, it is carers’ magazine. It is
a concern of mine — who cares for the carers? Everyone who calls at my
house asks how I am. If anyone 'phones it is the same. But who asks, “How
is David”? He has five slipped discs, and is always in varying degrees
of pain. I suppose they still think his primary role is my carer. Wrong, sad
but true.
If you look back you will see a reference to David putting his beloved car (a
Subaru Impreza Turbo) before myself and the kids; well, he has now bought a
Subaru P1, a limited edition, apparently, but I’ve no idea, except that
it’s blue. It took me three days to even realise it was on the drive —
he took me to the garage to fetch something and I went straight past without
even noticing. I think David was a teeny bit annoyed and he stood there like
a man posing, introducing something special and I hadn’t even spotted
it. So I expect that apart from falling further down his list of priorities,
we will be living on bread and water for the foreseeable future.
April 2004
I kept the appointment with my consultant for ‘people with physical disabilities’
(normally I ring to cancel, as there is no point in wasting both his and my
time if there is no real change in my condition). I was feeling so low I asked
if I could have a plasma exchange. Naturally he said no. I had told him about
the non-SMS ‘problems’ I was having at home. He obviously realised
my state of mind and referred me to my original neurologist. I will be seeing
him in June.
However, there is no doubt my SMS is getting worse (although I try to kid myself it isn’t). There are good days and bad days. On a scale of 1 to 10 (10 being bad), a good day is 4 and a bad day is 6. So really I should be grateful as there are others who would be delighted with that. I can still (occasionally) drive my car, but the only things I really drive are people — I drive them mad! Most of the time I manage around the house. The garden is OK, providing I have my walker. I use my walker when I am out, and a wheelchair if I am going to be out for a long period of time. I don’t have the confidence to venture out alone which frustrates me more than anything. It seems so totally irrational. For example, why can I cross a road if someone is with me, but can’t if I am alone? That is just one example of this weird phenomenon.
I have to deviate a bit here: Have you noticed people who ‘drive’ motorised scooters? It seems everywhere one goes there is a motorised scooter aiming for an unsuspecting pedestrian — myself included. OK, let’s get back on track again. I am hoping this is just another trough I am going through, and that I will return to ‘normal’ again.
May 2004
May 1: One of the saddest days of my life. Mum-in-law died. She had been living
with us since last July after being diagnosed with terminal cancer. During that
time she had a heart attack and two cardiac arrests. She never complained or
told me if she had any pain, although fortunately she didn’t really suffer
until a few days before she died. She was at home with all the family around
her when she died, which is what we all wanted. What am I going to do when
it hits me that she is no longer here? Typical of me — here I am wondering
how I will feel and not even considering the effect it’s having on David…
We have had another charity committee meeting. One of the things we decided to do is to have an awareness week in September.
June 2004
I have seen my original neurologist. He wants me to try IVIg. I don’t
know if I mentioned it earlier in this account of my life with SMS, but I drink
vodka to ease the stiffness — a bottle usually lasts me about 2-3 weeks.
My consultants know, and don’t have a problem with it. I purposely didn’t
have any the day of my consultation, and could barely walk. I wanted him to
see me at my worst. After leaving his room, David and I entered the lift and
as usual there had to be an amusing incident. What could be the worst situation
for someone suffering from the startle response (one of the symptoms of SMS)?
Don’t know? Answer: Being stuck in a lift with someone suffering with
Turettes Syndrome (sorry, not sure of the spelling). I bet the chances of that
situation happening is about the same as getting SMS. Every time he shouted
or made a high pitched sound, I jumped! I wonder which one of us was the most
embarrassed. I’m sure he must be used to people looking at him, but not
used to someone jumping at every noise he makes. I wish I had had the time to
explain that I knew what his problem was, and had been able to tell him mine.
If he had the same sense of humour as me, I imagine we would have both have
curled up laughing.
July 2004
I received a 'phone call on Wednesday evening at 7.30pm from a doctor
at Hull Royal Infirmary telling me I was to be admitted the following morning
at 9am. I was to begin a 5-day course of IVIg (Intravenous immunoglobulin) on
Friday. I arrived at the hospital, with step-mum there to keep me in line, and
was met by Dr Nandakuma. I asked him why I was being admitted the day before
my treatment was to start. He explained that I could well lose the bed if I
were to wait until the next day. Anyway, he formally admitted me and, after
giving him a million reasons as to why I could not stay, he gave in and said
(in a defeated way) “Oh, alright then.”
I arrived the next day feeling a bit apprehensive. In fact my worries proved to be unfounded. The nursing staff were very good. There were quite a few amusing incidents during my stay. The first was the morning after my admission. I went to get a shower about 6.45am. I had almost finished when one of the nurses called to me saying they needed my room and I would have to move. When I came out of the shower, my bed, case, clothes, everything had gone! I had to search the ward for my bed. When I eventually did find it, I also found I had gone from a single room to a 12-bed ward.
I spent a great deal of time that day being talked at (yes, talked at, not to…) by Joan, who was in the bed opposite me. She told me that her hair was a mess, so I used my styling spritz and a hot brush to sort it out. The next morning I went off for a shower and smiled at Joan as I walked past. There was no response. I whispered “good morning”. Still no response. When I came back, she said “Hello”, and told me she had just woken up. It was later that day I found out she had a glass eye and that she can’t blink!
One of the other ladies had been for a shower and told me she could not wash her hair as she didn’t have any shampoo (she hadn’t seen the gallon bottle on the floor of the shower cubicle floor). So I took her to a single room with a wash basin and washed her hair for her. Another lady was having a hot flush. I was able to help out there, too, as I had taken a cooling spray in with me (expecting the ward to be roasting). Word got around quickly that if anyone wanted anything they were to ‘ask Liz’.
On the Saturday Eloise and Christopher were having a joint birthday party and sleepover. About 3pm I got a call from David asking where I had ordered the bouncy castle. I couldn’t remember. Anyway, it hadn’t turned up. Half an hour later I got another call telling me our gas BBQ would not work. Fortunately, David managed to borrow a small one from a neighbour, which meant the food had to be partially cooked in a frying pan in the kitchen before being transferred to the BBQ. My friend, my brother, his wife and a neighbour all helped out. During this time a few items were smashed or melted, but by far the worst thing was the fact that they finished off the last three bottles of my wine club wine. I wouldn’t have minded, but I always save the best ones for last (for last, read me…).
While all this was going on, I was sitting very comfortably watching TV. On Sunday I used my mobile to ring home and find out if I still had a home to go back to. One of the nurses was watching me, shaking her head and tutting. When I had finished my call, I went over to her to apologise for using a mobile on the ward. She said: “As a former nurse, you should know better”. I was about to say sorry when she repeated herself, adding “You should have used the ‘phone at the nurses station, then it wouldn’t have cost you anything.”
Monday was the day of the ward round. Dr Ahmed, my consultant, told me I could go home the following day after my treatment had finished. Dr Ming (my neurologist) had a chat with me and then the cuddly Dr Nandakuma came and told me I could go home on Wednesday. I told him what Dr Armed had said, but was told they were saving the bed for someone who had been waiting to be admitted for quite a while. I then explained my cunning plan! I would leave the bed a bit ruffled up and put a magazine on the pillow. Then all he would need to do was put Wednesday’s date on the discharge form. Yet again he replied “Oh all right then” (I wonder if he gives in so easily to his wife?).
I have digressed from the object of the exercise, which was to tell you of my experience of having IVIg. The product I was given was called Octagam. I was given 0.4g per kilo, per day for five days. This consisted of two bottles each day, given over about six hours. I am pleased to say I did not suffer any major side effects. My blood pressure is normally about 110 over 70. By the second day, I felt a bit light-headed. When my BP was checked it was 85 over 50. However, it was back to normal the following day. On the 3rd and 4th days I felt a little confused at times (nothing new, there, eh?). I am not sure if it was the treatment or being in hospital. By the next day (going home day) I was OK. I intend to keep a daily diary of how I feel until I see Dr Ming again in two months.
August 2004
As promised, I have kept a diary since my course of IVIg. David picked me up
from the hospital and we went out for lunch. When we arrived home I sat down
and the next thing I knew I woke up about 6pm. I felt a bit spaced out. There
were two non-consecutive days — the second and fourth Sundays after the
treatment — when I was so stiff and in pain that I could only lay on the
sofa. My back was in constant spasm. Sadly, all in all the IVIg has not had
any earth-shattering effect. The only noticeable difference is that I do not
have the severe lower back pain when getting out of bed in the morning. I am
able to function fairly normally for the first couple of hours each day. The
rest of the day is the same as pre-IVIg.
The Hull Daily Mail has published another article!!! It was dreadful. I will say no more, apart from the fact that Christopher, aged 13, could have made a better job of it.
September 2004
I saw Dr Ming and he wants me to have IVIg for three days each month for five
months. I went into a BUPA hospital for the treatment on the 17th. I could have
gone as an out-patient each day, but as BUPA have told me they will only cover
the cost of one treatment as it is a chronic condition, I decided to take full
advantage of the facilities and think of it as a weekend away. Big mistake!
I was so bored. I had taken in a good book, some CDs, and two cards that needed
to be written and posted. The only thing I did was update my SMS address book.
I could not seem to concentrate on anything.
If truth be told, those of you who know me know I can talk for England. Perhaps that is what I really missed. At home, the kettle is always on, as everyone I know seems to use it as their second home. The kids have their friends around, so when our evening meal is ready, I usually shout up the stairs “If your name is not Blows, it’s time to go home”. At weekends and evenings I count how many pairs of trainers are in the hall (that way I know if they have all gone).
Anyway, as usual I am digressing. The immunoglobulin I received on this occasion was Vigam. As I write, it is September 30 and I am stiffer and unsteady than I was before the infusion. I have decided to up the diazepam and Baclofen. What do I have to lose? This means I am now taking 7.5mg of diazepam, 15mg Baclofen and 300mg Gabapentin in the morning, with 5mg diazepam, 10mg Baclofen, 300mg Gabapentin at lunchtime and 5mg diazepam, 10mg Baclofen, 300 mg Gabapentin at 7pm (ish) plus 7.5mg diazepam and 15mg Baclofen at bedtime. One of the things I’m not happy about is my short-term memory loss — and why. I’ve heard that someone else taking a statin (cholesterol lowering drug) suffered from the same thing and, putting two and two together, I’m wondering if there is a connection. Diabetics are now routinely given statins so it would be interesting to hear if anyone else is encountering the same thing (if you can remember…).
October 2004
Another member, Angela, told her story to Woman magazine. I remember the first
interview I gave. I was terrified. I really admire members who are willing to
tell their story, particularly when their health and anxiety levels are worse
than mine. Every time someone has the courage to do this, it is raising more
awareness about SMS.
I went into Hull Royal Infirmary’s day unit for IvIg. In truth, I don’t feel it is doing a great deal of good. Having said that, it is difficult to know if it is the IVIg or the fact that I increased my diazepam and Baclofen last month. Armed with the increase in medication and three days’ worth of immunoglobulin, we flew off on a much-needed two-week holiday to Florida.
I must deviate here for a moment to tell you about the wheelchair saga. I ordered it in June and was told delivery would take about six weeks as it was made in, and had to be transported from, Switzerland. The six weeks came, but the wheelchair did not. I rang the company and was told it was on its way (does anyone believe that line any more?). Two weeks later I was told something about the ferry company being on strike. Anyway, after numerous calls, and taking a different approach with them each time, I finally rang and ‘tearfully’ said: “We are going to have to cancel our holiday if I don’t get my wheelchair within the next two weeks”. Naturally, they knew nothing of my years in amateur dramatics (let’s face it, girls, we can pull that kind of stunt with relative ease). Naturally, it worked as my wheelchair arrived the next week and I had plenty of time to get used to it before we went away. Nice one Liz — even though I say it myself.
So, back to Florida. The temperature was a constant 80ish. I was in my element as my SMS did not like the climate and decided it was fighting a losing battle and would have to wait until I got back to England before it could even think about trying to get out of jail. I walked alone each morning from our apartment to get a coffee from the resort’s restaurant, pushing my wheelchair. I went on white-knuckle rides (did you notice the plural?). Walked for what seemed like a marathon, pushing the wheelchair around the theme parks. Swam with dolphins. I even sang at a karaoke bar and, surprisingly, did not get thrown out. Ab Fab, I felt so ‘normal’.
Of course, two weeks cannot go by without anything going wrong. The first incident was when Eloise and I went snorkelling. We entered the water, which was about calf height. As we ventured further, of course, it got deeper, but I was OK with that. When I put my mouth under the water it felt strange, as one has to breathe through the mouth, rather than the nose. I got used to that quite quickly. The next step was to put my head under water. I felt a little apprehensive, but I managed it. I’ve cracked it I thought — big mistake! I swam along until I saw a big underwater drop. What went through my head? Did I think I would fall down it? The next thing I knew was I was (excuse the pun) flapping about like a fish out of water. My snorkel had come out of my mouth; I pulled my goggles half way up — letting the water in — and was in a complete panic. I could see someone’s arm, and just splashed about until I could reach it.
Fortunately, there was a lifeguard at hand. However I was in such a state I could not speak (a first for me!). Eloise was by my side all along, but I was so out of it I had not realised. Anyway, she managed to explain, and the lifeguard told her to go and get me a life jacket. She duly arrived back with one, but she did not realise that they came in different sizes and had got me one that would have fitted Ten-Ton Tess! I put it on and assumed I would now be safe — another mistake. As soon as we got to the deeper parts, I lifted up my head, only to find the jacket had more air in it than I did, and all that I could do was to turn onto my back. To end this story as quickly as possible, Eloise got me the right jacket and from then on, we had a great time.
The next incident was at Cocoa Beach. Both the kids had body-boards and were having lots of fun in the waves. So I thought anything they can do…and I went in the sea with them. The next bit of information is not to be told to, or discussed, with anyone else (or I will have to kill you). I wear dentures. I should have glued them in that day, however Eloise took my hand and led me to the water. We struggled a bit with the board at first, but then I thought the next wave is mine, only the next wave came before I was ready, and it hit me like a biggish wave would hit anyone. I was knocked over, but all I could think about was, what if my teeth fall out? So I kept my mouth closed and panicked without a sound.
Just in case you are wondering, no, I did not go in the water again! Anyway, if anything else untoward happened it can’t have been very important, as I can’t remember. Despite the two, at the time, life-threatening incidents, I am considering leaving David, the kids, the dog, the tortoise, the tropical fish and the fish outside in the pond, and emigrating to Florida. On second thoughts, who would run the support group and charity if I were to go? Oh well, I suppose I had better stay here then…
November 2004
Arrived back in the UK. Joy, oh joy! Rain, cold and thoroughly miserable. The
only good thing is that at the end of the day, no matter how wonderful it is
to go away, it is comforting to be back home. Anyway, I think I have rattled
on for far too long about Florida, so I’ll get back to the real world.
IVIg time has come around again. I can’t really see any significant improvement in my SMS. Throughout the month I have gradually reduced my medication back to what I was taking back in September. I am keeping the heating on all the time and making sure I have plenty of warm clothes on when I go out. I am doing this in the hope that the extra warmth will have the same effect as it did when on holiday. Sadly it is not working. I think the cold and damp manage to make their way in, whatever I do.
Another member, Chris, has had his story published in the York Evening Press. Yet again, another moving story.
December 2004
I am getting stiffer and having more spasms in my lower back. As if that is
not bad enough, I am wearing out the knees on my trousers, as I seem to be spending
so much time getting from A to B by crawling. My dog knows I love him, but when
I am on my knees he seems to think I am doing it because I want to play, and
he prances around me, which makes my back spasm even more. I’ve told him
I will have him put down if he continues, but he takes no notice.
There have been a few minor incidents because of the stiffness, including not being able to stand to cook. The anxiety problems are back with a vengeance, which is distressing. The stiffness and spasms are still getting worse, so I have put my medication back up to the dosage I was taking in September. It took about a week before the effects kicked in, but I am feeling much better. Of course, I have had my IVIg, but it still does not seem to be working, although having said that, I don’t seem to be hitting the vodka as often as I used to (hmmm…?)
Christmas came and went without too many problems. I enjoyed New Year’s Eve, apart from the usual embarrassing things I am told I have done when under the influence of alcohol (as if!). We went to a party at one of my brother’s. It is customary for everyone in the area to gather around the avenue fountain at midnight and drink in the New Year while watching the fireworks. I had drunk it in hours before, but still managed to do it again with everyone else at the appropriate time. So, with a drink in one hand and walker in the other I managed to get lost in the crowd. It was only when a police car, with sirens screeching arrived that David realised I was not standing next to him and came to find me. I am guessing he thought/ hoped they had come for me. Anyway, despite being a disabled dwarf (the name my family and friends call me) I managed a reasonable number of New Year kisses.
January 2005
January 1: Well, I did not have a hangover, so I can’t have drunk too
much. Hang on though, two empty beds…where are the children? The mystery
was solved about 11am when we got a call from my brother asking when we were
coming to pick them up (oops! How do you forget the kids?). When we arrived,
they were tucking into a very delicious looking brunch.
The rest of the month passed by without any major incidents. In fact, I had a really good night out with one of my brothers. We went to a club to see one of my favourite folk singers — Chris Smither. Naturally, things didn’t go smoothly, as I was navigating. You can guess the rest. At least we weren’t (too) late...
The three days of IVIg came and went much the same as before.
February 2005
Why do we have to have such miserable weather here? The wind, snow, dampness
and cold… I know it makes most people feel a bit down, but when one has
SMS it makes life even worse, as getting out is that much more difficult.
There was one particular Tuesday evening that presented a problem for me. Eloise goes to the youth club and Christopher to Scouts. Normally, David does the last two pick-ups. But he was in London that day. It was a cold and sleety night and I took Christopher to Scouts. When I got back home, someone had parked outside my gate (perfectly legal). However, it meant I would have that bit further to walk. That is when the anxiety started. I simply cannot understand why six yards further should make a difference, but it did. I became very stiff, but managed to get myself and my walker out of the car. That is when the problem really kicked in. I just could not walk, not even one step. I stood in the sleet, getting colder, stiffer and more anxious. Three times I got back into the car, hoping I could calm down and loosen up enough to make the journey up Everest (well, that is what it felt like to me). I soon realised I could not do it, and drove across the road and up a neighbour’s drive (leaving my walker on the pavement).
I pipped my horn, and Billy came to my rescue. I reversed my car back to my house and, would you believe it, the other car had gone. However, I was still in no fit state to walk and Billy had to help me out of the car and into the house. By this time I am not sure if I was shaking from the shock of it all or shivering because I felt so cold. I had to ring Billy again 15 minuets later to help me back to the car to go and get Eloise. It is strange how I can feel confident and relaxed enough to drive, but not to walk alone. Anyway, fortunately David was home in time to pick up Christopher at 9.30pm. This incident sounds so absolutely ridiculous, but the reality of it was quite the opposite.
I have had my last IVIg treatment, and although I would say I have not drunk as much vodka as I did pre IVIg, I don’t really feel it has done much for me. However, had I not tried it, I would never have known.
We had our committee meeting this month. We talked a lot about raising money and, of course, awareness.
March 2005
We have had a new bathroom fitted. The reason for mentioning this fact is because
the builder is the first person I have come across who did not appear to acknowledge
my condition. By now, readers of this diary will know I have good days and bad
days, good hours and bad hours. A small example of what I mean: Walking upstairs
with a cuppa for him was OK most of the time, but on the odd occasion when I
was ‘stuck’, I would call to him and he would come and take the
mug off me, but not ask if I needed any help to get back down! As I have said
before, little things like that bring on the anxiety. It then takes time to
settle down again. The up side of this “cuppa” incident was that
he waited much longer before he got another one.
Changing the subject back to IVIg. I finished my course last month, and would not be due for the next one — had I being going to have it — until the end of the month, so why have I felt the need to start drinking vodka again? I seem to be becoming more reliant on it, but as I have said in the past, it does help to loosen me up. Just a note here to say a bottle lasts about two weeks, so I don’t think I am a full-blown alcoholic yet.
My blood sugars don’t help, as they are running high, which makes me stiffer. The question here is how much of SMS is in the head? Before a diagnosis was given, many others and I were told it was all in the head. But I now believe that in part (certainly the anxiety) there is some truth in it. Having said that, there are proven medical reasons for this happening. How we get round it is another thing. It is both embarrassing and annoying when the doorbell rings and I can’t get to answer it. Never mind, if it had been a friend, they would have just come in! So, I was probably saved the job of telling a double glazing salesman to go away.
There are quite a lot of group members around the East Yorkshire area so we decided to get together and have lunch. It was really nice to be able to meet people I normally only speak to on the ‘phone.
David, the kids and myself went to Sheffield to see Anastacia (one of my birthday
presents). We left home early expecting to find somewhere to eat on the way.
However, it was not to be, as every restaurant was full and we would have had
to wait at least an hour to be served. So we ended up at the arena and had chicken
and very salty chips. What a horrid birthday meal. Still, not to worry, the
concert was pretty good. In parts, at least — why do some artists feel
the need to turn their best-known songs into something completely different?
A couple of times she ruined top tunes by giving them a jazzy sound.
April 2005
This month has seen the stiffness, spasms and anxiety getting worse. There have
been so many incidents where I have got stuck. Silly things like not being able
to pick up a plate from the kitchen table, walk to the dishwasher, which is
simply
a turn around and a couple of steps. So to plan B: I get down on my knees (that
way there is nowhere to fall) and do the job, which is why I wear out the knees
on my jeans so quickly. Now this would not be a problem if I enjoyed clothes
shopping — but I don’t. I wonder if after that last comment I will
have a queue of men at the door wanting to swap their wives for me.
It was the big 50 for David this month. I managed to hide the fact that I was organising a dinner party for him. On the Thursday I did the food shopping with Eloise. I made leek and potato soup. On Friday I made a chocolate cake, profiteroles, and a rhubarb (from the garden) crumble and laid the table for nine. When the guests arrived I managed to stay calm (that’s a first). Admittedly, I did have some help serving the food, but I managed to cook nine fillet steaks to order and make a sauce, served with roast potatoes, peas, mushrooms, cherry tomatoes and onion rings. Why and how did I manage it when I have felt so bad earlier this month? It does not make sense! But this is the irony of SMS.
One of his presents was a day trip to Iceland (the country not the shop). We had to be at the airport by 6am. Because I had not got absolutely everything ready the night before, I was anxious and very stiff. In fact, David had to almost carry me to the car. By the time we arrived at the airport, I had calmed down. Then I realised I did not have any socks on underneath my short boots, so I went into a shop at the airport and asked if they sold pop socks — and why I needed them. Apparently, there was not a shop anywhere that sold said item. But, as ever, my luck was in, as the assistant was wearing a pair which she kindly gave me (she assured me they were clean on that morning). People can be kind. Haven’t I written that somewhere before?
We had a super day. Among other things, we swam in the Blue Lagoon, which is a volcanic pool. The only downside was because of the minerals in the water, my lack of foresight in not taking any shampoo with me and the gusty winds meant that every time the coach stopped to let us off (and there were lots of stops) I would get back on looking as if I had been plugged into an electric socket! Did you know Iceland is one of the most expensive places in which to live? Hence Eloise got a small Celtic necklace, and Christopher got a collection of Icelandic volcanic rocks. Free, of course, as I just picked them up as we walked around. Christopher’s gifts were not as useless as you may think, as one of his hobbies is collecting rocks, minerals and fossils.
Later on in the month I thought I needed some sun, so I visited my sister and spent a week in Brighton. It was a mixed week SMS-wise, some days were good and some days I had to use my walker indoors.
May 2005
I have been fighting a losing battle with my lower back, particularly first
thing in the morning. The spasms and stiffness are at times breathtaking. I
can usually manage to come down the stairs, but sitting for a cuppa is when
it usually begins. I sit at the table, but my back wants to play around with
its friend ‘stiffness’, so I cross my legs. That does not work so
I sit forwards; no joy. I put my feet up on another chair, but my back does
not like that either. In fact, my back does not even like me to pick up a cup
of tea. But it lets me, just so it can laugh when I spill it. After about an
hour of constant spasms and stiffness I fight back. When I get up and take a
few steps my back knows I mean business! It will usually give in when I mobilise
myself. However, it will try again later in the morning. This time I hit it
with vodka! This is my weapon of mass destruction. After about 10 minutes I
am mobile, and relatively comfortable again — for a short while. Because
of this, I decided to see my neurologist. He told me to change my medication
around, try different amounts, more of one, less of another, to see if it would
help. Of course, this takes time, but I will give it a go.
David and I have been to two concerts this month, Neil Diamond, and the newly formed Queen fronted by Paul Rogers. Queen were fantastic. The performance was being recorded, so when the DVD comes out you may see moi on it (I’m the one in a wheelchair, wearing a red top).
June 2005
I have been trying to alter my medication, but nothing seems to work. To add
insult to injury my blood sugars have been high. As I have said before, when
my blood sugar is high — above 12 — I get stiffer. So at the moment
it is heads I loose, tails I can’t win. I saw my diabetic consultant and
he adjusted my insulin, so fingers crossed.
We are having some building work done on the house. We are unsure what to call it because we wanted to make a disabled-friendly entrance. We asked the architect for a porch that would be able to house my wheelchair and walker. When we got the plans back, he had called it a garden room. David refers to it as the lean to! Anyway, it will all be on the same level as the garden and hallway. So, if any of you want to come and visit, you can. Just side-stepping for a moment: Have you noticed how much extra sugar you need as all tradesmen seem to have copious amounts in their tea or coffee?
October 2005
Well the summer has been and gone, and so have the builders. I bet you are all
thinking, “Great, they can all relax now because it’s all finished.”
Wrong! They have left both the garage and the garden room unfinished; however,
the garden room is ready to decorate. Mmmm, I thought, I can emulsion that.
Wrong again. I managed the ceiling with the help of an extension pole. I used
a pad to do the walls. Remember I am now only 4’10” thanks to the
hyperlordosis (to those who use the metric system — sorry, but you will
have to convert it yourself). Anyway, I was being sensible. I had a small pair
of steps to stand on which had the paint tray on the top, and a big pair of
steps for me to hold on to. I also had the ‘phone with me. Armed with
a medium-ish sized vodka I was making great progress. Slow, but I was getting
there. That is until I moved the small steps. I stood on the second step, put
the pad in the paint tray and reached upwards. My body realised I did not have
the big steps or the ‘phone next to me before my brain did. This is where
the nightmare started. My back and both legs went into spasm. Please God, not
again. Time went by and from time to time the spasms would ease off. I could
turn my head to the left but not the right. I was holding onto the steps for
dear life.
The plan was that as I could see through my study window I would be able to see if anyone walked past. About half an hour later I saw a paperboy walking past on the other side of the road. I shouted for help as loudly as I could, but he didn’t hear me. My dog did though, and came running and barking. He was obviously distressed. If only he was ‘Lassie’, he would have found a way to rescue me. Sorry Ollie, but running up and down the garden barking your head off doesn’t help. Nor does barking at me.
I was so hot and sweaty I could feel my hands sliding down the aluminium steps. There was nothing I could do about it. I had to rest my chin on the top of the steps or I would have fallen off. If that had happened I would have suffered numerous broken bones, due to the fact that I would have been totally rigid. About an hour later I was able to move my right leg down to the floor. All I could do was lie on the floor. I was exhausted. I eventually managed to crawl into the kitchen and had been there about five minutes when David walked in. He took one look at my face, which was bright red. I was dripping wet and could hardly speak. David’s response was “Are you having a hypo”? !!!!!!!!!!!!! – Why hadn’t he come home half an hour earlier?
I had an article featured in Real magazine. They took such a professional view of the subject and did not make it into a tacky freakshow. I would say it was by far the best magazine article written to date.
We all went to Majorca in the half term holiday. I decided to go exploring alone — well, not really as I did have my wheelchair for company. The terrace and gardens around the hotel grounds were a bit of a maze. It was disabled friendly, but I seemed to be going around in circles and finding myself in a place I had already walked through. However, I finally reached the beach. The only problem was the very steep (but only about three feet long) slope to the beach. Having got this far I was not going to give up at the last hurdle, so I let my wheelchair run down the ramp, and swivelled round a pole and down to my wheelchair (not as erotic as it may sound).
The first thing I saw was a small island about half a mile off shore. I sat in the wheelchair and had a ‘Shirley Valentine’ moment. Gazing at the island, I said “Hello Rock.” However, as Tom Conte did not arrive with a glass of wine, I gave up and made my way back to the slope. Fortunately, help was on hand and both my wheelchair and me were helped up. I tried to remember the disabled friendly path back, but as usual my sense of direction let me down. At least I knew I could not get too lost as I was in the hotel grounds. Believe it or not, even after a week I still kept getting lost.
The night before we left we ate in a bar which had a karaoke. OK, it’s a bit of a no no if you are ever going to see the audience again, but I wasn’t. So up I got and sang Bob Dylan’s ‘Just Like a Woman’. After the thunderous applause finally died down, David and I made a hasty exit, but not before a tearful woman thanked me for singing her favourite song (alcohol is very inexpensive there, and she was swaying a bit!).
The only problem during the holiday was when a jellyfish stung Christopher. Apparently, a few minutes later, another boy was stung quite badly. I witnessed a mass exodus from the sea, but didn’t know why. Had my island turned nasty? Do tsunamis happen in the Med? Anyway, I had my video camera with me ready to film the event. An event which had been and gone — the boy who had been stung earlier. So I switched off the camera and got back to my book.
November 2005
November has been an extremely stressful month for all of us. I don’t
want to go in to details, but the upshot is that Eloise, at the age of 16, has
left home.
December 2005
It has been the usual, stressful, December. Shopping — why can’t
we go back to the days when buying presents for the sake of them is not the
priority? On the subject of presents, why are we told what one’s children,
nieces and nephews etc want? Surely it is the giving that matters? Anyway, moan
of the month is over now.
Christopher’s birthday was a bit of a laugh. A group of us went to the cinema to see King Kong. I always fall asleep — perhaps the chairs are too comfy. Unbeknown to me, everyone had taken a 50p bet on how long it would take before I fell asleep. Christopher won. He said one hour. I lasted 50 minutes.
We ate out on Christmas day. I would recommend it to everyone. No shopping, cooking or washing up — fab! But I did wonder what Eloise was doing.
It was our silver wedding on December 30. David and I had arranged to spend the weekend at a four-star spa hotel. How could I have even thought it would have been straight forwards? To begin with, a journey, which should have taken 45 minutes, took over two hours, due to a sudden snowstorm. Fortunately, we were towards the back of the traffic jam and were able to turn round (unlike many vehicles which had become stuck in the drifts). We drove back to Beverley, through to Hull, on to the M62, the A1, all the back roads and arrived at the hotel nearly two and a half hours after setting off. I was booked in for a spray tanning session, only to be told it may not be such a good idea as one has to ‘cook’ for at least four hours. I didn’t want to sit in the room and waste the day, so I opted for a full body massage. I guess most of you would relish the idea, but for me it was purgatory. I could not relax. In fact, I sat on a chair and bent over the bed for the back massage. I actually felt more tense when I came out than when I went in! David had a reflexology session which he enjoyed.
We spent the rest of the day exploring the hotel and enjoying our room with its four poster bed and a view over the golf course. I even managed a swim — actually, it was more of a bit of flapping about. The only time I managed to swim, I went round in circles, resembling one of those frogs one buys for the kids to play with in the bath. The reason for this amusing sight is because my left side is weaker than my right and no matter how hard I might try, I swim crab-like.
We went down for dinner at 8.30pm — you know what’s coming, don’t you? Yes, another disappointment! I ordered salmon, David ordered steak — medium to well done. Both meals arrived. I thought they were starters. Silly me, it was nouvelle cuisine. I have a theory that such meals were invented by an anorexic French chef who, in my opinion, should be made to live on such a meagre diet for the rest of his/her life. David’s medium to well done steak was served blue (just how I like it), accompanied by six chips arranged so the two of us could have used the vegetables to play noughts and crosses. David complained about his steak, which was taken away (leaving me eating). The next one arrived, and by no stretch of the imagination could a piece of gristle be disguised as a steak, so back it went. By this time I had finished eating. Along came steak number three. This time it was neither blue nor gristle, but an inedible burnt offering. By now David’s appetite had disappeared and been replaced by utter frustration. Let me say now that if you want a perfect steak, fly to Orlando and try Charlies. I’m drooling at the thought of cutting through one of their blue fillet steaks even as I write…mmm.
OK, back to reality. The rest of the evening was fine, and so to bed. The morning arrived and I felt achy and stiff. Were the pillows uncomfortable or is it because the SMS is spreading into my neck? I suspect the latter. Breakfast was yummy — a bowl of porridge, bacon, egg, tomatoes and mushrooms. I spent the morning reading the paper and drinking coffee. David had a full body massage, which he enjoyed far more than I had the previous day, although I do think the girl carrying out the act made the experience even more enjoyable (yes! David). Our drive home took 45 minutes because, overnight, the snow had done a disappearing act. No wonder us Brits are noted for talking about the weather.
We normally party on New Year’s Eve, but it seemed nobody had the energy to organise anything this year. I should have known better. We had a call from my brother Martin and his wife Sue, inviting us over for a meal. They can always be counted on to make things better. Sue, an excellent host, cooked for eight of us.
Although — as always — I enjoyed being with them, I was stiff all evening. As midnight approached, we began to make our way to the fountain in the avenue where the fun usually begins. I had barely got out of their house when I realised I could not make it, and had to be driven the whole 300 yards! Once there, bottle in pocket, poppers in hand, awaiting the midnight bells, I found I could not let go of my walker, or David’s arm. So, while everyone else made merry, I was glued to the spot, unable to pull the poppers or drink from the bottle in my pocket.
There was one good bit though. Three well oiled young guys climbed to the top of the fountain and somersaulted off the top. I wonder how they felt later as they all landed in bushes as opposed to water. Anyway, I was driven back to my brother’s house, and David helped me out of the car. We were half way across the road when I felt as though I had been winded. I could not breathe. Although it did not last long, I was very scared. Thank heavens David was there. He managed to get me into the house and I had a rather large glass of alcohol. I had not drunk very much all evening. Perhaps I should have done! We went home as soon as the alcohol had calmed me down enough to allow me to get to the car. Bad end to a not very good year and I know I’m getting worse. Much worse.
January 2006
Not a good month for me. In fact, one of the very worst. Read on to get a flavour
of the month. My blood sugars have been constantly in the teens. In the UK it
should be between 4 - 10 (other countries use different measuring systems).
When it is high, I am stiffer. Each day I took my insulin, but did not eat anything
apart from my evening meal. I knew it was the wrong thing to do. After all,
I had spent several years as a practice nurse, and part of that time was spent
running a diabetic clinic.
January 16: I saw my neurologist. Between us, we decided to titre the Gabapentin until I was off it completely.
January 17: I was in one of the bedrooms painting. I felt strange, wobbly,
not the usual hypo symptoms. I remember walking along the landing, then nothing
more until Christopher was giving me neat Ribena. He had ‘phoned for an
ambulance and alerted a neighbour. By the time the ambulance arrived I was coming
round.
January 21: A deja vu moment! My hypo matched the previous one, but this time
I managed to get downstairs. I don’t know how long I had been there before
David found me on the kitchen floor. I must have fallen off the chair as I had
bruised my head.
January 24: I got up at 6.30am as David had to leave early to catch a train for a meeting in London. I wanted to check my blood sugar before he left. About 7am I tried to get up off the kitchen chair to go to the toilet, but found I could not stand. I tried to crawl, but got as far as the door when the stiffness and spasms started. My whole body was affected. My back particularly.
It was so bad that I lost control of my bowels. I called to Christopher who came to my aid. The spasms and stiffness were so bad I asked him to lay me down, which he did, but moments later I could not breathe. It was as if I had been winded. It lasted about 20 seconds. Once I could speak, I asked him for the ‘phone (ready for him to call 999). I managed to ‘phone my brother Martin, but it was the answer phone. My next request was for the vodka. It was difficult to drink as I was shaking so much. The stiffness and spasms were still present, but not quite so severe. About a minute passed before the second bout of not being able to breathe began. Again, although it did not last long, it was a terrifying experience.
Three thoughts went through my head: Am I going to die? If this lasts long
enough I will pass out and then perhaps my muscles will relax enough, and I
will begin to breathe again; lastly, if there is a God, would he be so cruel
as to let me die in front of my 14-year-old son?
At about 7.30am, brother Martin rang. He is a social worker and had to take
a child to school, but said he could be with me by 10am. At 8.15am a friend
rang. As soon as she spoke I burst into tears. “I’ll be round in
10 minutes,” she said. I had to keep Christopher at home until she arrived.
Fortunately, the school was very understanding — well, the teachers were.
Christopher’s slightly built and has always been bullied, but after the shock he had encountered that day, chants like “Your mum’s a spaz” a “freak” and the rest had him in tears, which then leads to even more nastiness from the other boys. Bullies have been around since time began, and it does not help Christopher’s case as he has dyspraxia (hand/eye co-ordination problems).
Martin stayed with me all day. David ‘phoned about 2.30pm (having popped out of a board meeting). I had intended lying to him, telling him I was OK, but as soon as I heard his voice I blurted it all out. I told him I would be safe as Martin was picking up Christopher and I at 6.30pm to take us back to his house to eat and stay the night. We were half way through the meal when David walked in, having walked out of the board meeting. I hope he doesn’t get any speeding tickets as he arrived back so quickly. Although I feel completely at home in my brother’s house, there is nothing like one’s own bed, and later that evening that is where we went.
January 26: When I wake up in the morning my back and legs always want to stretch. I’m not entirely sure if it is a stretch or a spasm. However, I would be happy for it not to happen at all. But as usual, my body does what it wants, when it wants. I think my body has gone deaf — it just ignores my brain!
On this occasion I got out of bed with rather damp pyjama bottoms. No problem, as I put them in the shower and practised my grape treading on them — yes, I can still multi-task! For the guys reading this, don’t try to analyse this concept or you will become confused, unless you are not doing anything else at this particular moment in time...
Throughout the month my blood sugars have been high, despite no change in my insulin dosage. To try and combat this I have (stupidly) gone days without eating, apart from an evening meal. I put it down to an undesirable and unwanted glitch. There have been times in the past when my blood sugar will not come down, and I simply put it down to the fact that diabetes is not an exact science.
Since my incident on the 24th, I have had family or friends “volunteer” to ‘baby-sit’ me in the mornings. On the one hand, I have been extremely grateful, but on the other, it has made me feel quite bitter that I have needed this care. I am so lucky to have these caring people in my life; it makes me feel ashamed to say a part of me feels bitter. It also concerns me how much time David has had to taken off work. He may be a big-ish fish in a big-ish pond, but the powers-that-be telling him they understand and that it is OK is one thing, but one never knows how long the ‘understanding’ will actually last.
I am concerned about the amount of alcohol I have consumed this month, but whatever the reason, it seems to help more than medication. Many of the people in the support group find it helps, so I am not alone, and there must be a valid reason why it helps — and so quickly. My consultants don’t have a problem with it, but I do. I have been drinking about a bottle a week this month. Far more than previously. It helps with the spasms and stiffness, but it affects my memory and I find myself repeating things (even more than I would normally).
February 2006
I have had Lifeline installed. It is an emergency help device connected to the
‘phone. I wear a button attached to a necklace. If I need help, I press
the button and am connected to someone who can either ring one of the numbers
I gave, send one of their people or ring for an ambulance. It gives me a bit
more confidence and the family has more peace of mind.
I saw my neurologist again. This time my back decided to put on a good show for him. It was so difficult trying to stay sitting on the chair. I have no idea why it happened. Nor do I know why I said that because most times it just starts when it wants to anyway. Most of us suffer a form of agoraphobia, but for the first time I felt claustrophobic. It was a weird feeling. I remember asking him if I could climb out of his window which would have enabled me to get to the car without having to walk back through the reception area. There were a few expletives intertwined during that request!
The two main reasons why this would not have been possible were a) The window only opens about a foot wide; b) Even if there had been no glass in it, how would I (the disabled dwarf, as my family and friends call me) have climbed out? Fortunately, a wheelchair was provided and David took me back to the car. Not surprisingly, my consultant wants me to take more diazepam…
I saw my GP, Dr Hardisty, who told me I was having a panic attack when I couldn’t breathe (see January entry).
On the bright side, my brother Martin and I saw Flossie Malavialle, a French folk singer. I have seen her a couple of times before and now have all her CDs. After the show, she wrote down the chords to a song called ’More Hills to Climb’. I wonder if I will ever be able to play it well.
When we got home, David told me the hospital had rung, and that my mother had
just died. The sad thing was that we had been estranged since she left when
I was five. She had lived in Spain for a number of years, and had only returned
to the UK when she needed full time care. Over the last few months we had started
to build a relationship.
March 2006
I have dispensed with the baby-sitting service, but would like to thank everyone
involved for their patience, caring and for keeping my spirits up. However,
I still need help, so I got in touch with social services. They have been to
assess my needs and have decided I am to have a carer 10 hours a week, Monday
to Friday. These hours can be used at my discretion. It was also decided that
it would be implemented by direct payments. The advantage of doing it this way
is that I can appoint a carer of my choice. If I had used the social services,
I would have no knowledge of who was coming or at what time.
This may sound as if I am being ungrateful, but as a sufferer of SMS, I could not cope with not knowing who may turn up. I don’t want someone arriving with an attitude of ‘I will suffocate this poor dear with kindness’, or the opposite — someone who thinks they can tell me what I can or cannot do. The essential thing is that they have a sense of humour, and would help me to do what I want to do. For example helping me do the weekly supermarket shop, if only to spare David this onerous task on top of everything else he has to cope with.
I saw my neurologist again and asked if I can try a plasma exchange. He told me I could, but he wasn’t sure it would be of any help. So we will just have to wait and see. I feel I am going downhill too quickly and will give anything a go.
David and I went to Christopher’s meet the teacher night at school. The car park was full, but we eventually managed to find a spot, unfortunately it was at the opposite side to the entrance for the disabled. We got out of the car and the stiffness started.
Anyway, to cut a long story short (can I do that?), David and Christopher managed to get me back to the car and they went in without me. It was a cold night and I was only wearing a blouse (no silly comments please). After about 15 minutes, I was shivering and found some blankets on the back seat (we keep them there so we don’t get dog hairs weaving their way into the seats). I wrapped myself up like an Egyptian mummy, only to find I had to remove them a few minutes later as I was having a tropical moment.
It’s OK, I’m menopausal, so the ladies will know what I mean. So blankets off, windows open, only to find a few moments later it was windows closed and blankets back on again. All in all I was only alone for less than an hour, as my guys came back having seen only three teachers, but in that time my thoughts had run riot. I found out where the horn was and decided if I had a problem, I would bleep an SOS. Of course, any normal person would have opened the window and shouted for help. I also thought if I die before they got back, how could I tell them I love them. So I found a pen and some paper and wrote it down. Thank God I didn’t need to use it, and they didn’t know I had done it. If David had known I think he would have had me committed (I knew I wouldn’t be able to keep it short)!
At least I have had my music fix this month. I have seen Fiddler On The Roof, the Hollies, a Beatles tribute band and spent St Patrick’s at a Ceilidh.
April 2006
This month has passed without anything significant happening, so I will take
this opportunity to tell you about my life. I was a honeymoon baby. Born in
Hull in 1952. My parents were called Ron and June. My mother and maternal grandmother
wanted to call me Elizabeth. Apparently, my father did not get a say in the
matter, so when he went to register me he put Yvonne down first. Not because
he particularly liked the name, but it did give him great satisfaction to have
done it (I would say at that point, the writing was already on the wall).
Sixteen months later my first sibling, Steven, arrived. Then Jill, who sadly died before her first birthday. Martin popped out next. By the time Simon was born, the marriage was, to all intent and purposes, over. My mother left when I was five. She had met Ben, a guy to whom she had a son called Arthur. To this day none of us know if Simon and Arthur are full brothers, not that it matters to any of us. Ben used to beat my mother and Arthur, so she left. I know this makes her sound bad, but in those days there was no help available for women in abusive relationships.
We were all fostered out. Again, you have to remember there was no help for single fathers. He had to work very hard to pay for us all to be fostered. Simon stayed with the same people until he left home to marry. Steven and Martin stayed in care until my father re-married my stepmother Joyce. They then lived with them. My father and Joyce had two children Claire and David.
At the age of eight I was fostered by my maternal grandmother, who spoilt me rotten. She died when I was 23. I felt very alone, as I had never had a lot of contact with my family. I am slipping back in time a bit now to two weeks after my 16th birthday when I met a guy whom I married at 19. Big mistake! I won’t bore you with the details, only to say I tried to leave a couple of times. He gradually changed me from an out-going girl to a wimp who did not have a mind of her own. These days it would be called abuse.
I was making plans to leave when fate lent a helping hand. I met David. What a breath of fresh air. Bit by bit he helped me back to sanity. I never had to ask his ‘permission’ for anything. He always gave me his full support in anything I wanted to do. He understood my lack of confidence and helped to restore it. We married in 1980, and are still happy, despite the things life seems to throw at us on an almost weekly basis. He is honest, supportive and kind. I will stop there, because if he reads this – which he will, he will require an enormous hat! (I’ve read it — make me breakfasts at the weekend and I’ll be happy — David). When you do read this David, I have to tell you that if Johnny Depp, Richard E Grant, Rik Mayall or Hugh Laurie to name but a few were to knock on my door, well sorry, but bye! I wish my Nan had met him. She would have loved him and been so happy for me.
In 1984, my sister Claire came for Christmas; she left two and a half years later... She was here when we got the call to say our father had died. He was only 54. At that time he was living on the Castle Howard estate. Joyce, his second wife, ran the shop. The wake was held at one of the big houses there.
We noticed a couple of twenty somethings, both wearing shorts and walking around with plates full of food. It was only when they asked where the till was, we had to tell them it was not a café. Naturally, in the Ainley tradition we invited them to stay and help themselves to whatever they wanted. The fun bit was watching them both wobble as they rode off on their bikes (one too many glasses of wine, methinks). We could all hear our Dad laughing (metaphorically speaking, of course).
Every now and then an Ainley (my maiden name) family member crawls out of the woodwork — I should have phrased that differently, but no worries. I had met Arthur a couple of times over a two-year period. We got along well enough, but there was no real bond between us.
One day I got a call from Martin telling me Arthur had died. I was devastated, so much so that I rang my mother who was at that time living in Spain. Despite our differences, I felt she needed consoling. I also rang Arthur’s wife to console here…only to find it was a relative with the same name who had died! True to form in the Ainley family, everything has a funny/ slightly crazy outcome. When I rang, Arthur was watching a TV programme called ‘You’ve been Framed’!
I rang my mother back and told her the good news. Anyway, we had a party to celebrate the fact we had not lost our brother. We had a competition to find a name for the party. David (my husband) won with “Our Arthur who ain’t in heaven”. Well, he is a journalist, so I think he had a head start.
I could write a book on how close a family we all are, and have been for a long time, despite the chaos we endured during our early lives. A fitting testament is that we are all married or have partners and children. Career wise, I was a nurse, Steven got a degree in business studies, and for a while taught computer skills at college. He now designs software for companies, as well as being in property management.
Martin has a first class honours degree in social work. His expertise is working with abused children. When Simon was younger, he was a dancer. His claim to fame is that he was one of the dancers in Michael Jackson’s Thriller video (watch out for the short, fair-haired one whose arm falls off!). He has also done a bit of acting, too. He now works as a construction site manager. Claire is a nursery nurse. David is a chef. Last, but not least, Arthur, who deals in antiques and also runs a carpet cleaning business.
Although we are scattered around the country it would only take a ‘phone call if one of us needed anything. I could write a book about my family. I would call it The Ainley Family Versus The Adams Family. Both are as crazy as each other. That may not seem apparent from what I have just written, but I have left out a lot, as it will either offend or excite too many people and, to be honest, I’m not sure I could cope with anyone pretending to be an Ainley just to get a piece of the fun!
This diary is supposed to be about life with SMS, and yet again I have deviated and may well have put you off reading any further, but please be patient and read on.
May 2006
Well, I feel quite proud of myself this month. I visited my sister Claire in
Ditchling, near Brighton. I went by coach, alone. As David waved me off, I felt
a bit nervous. What would happen if I had an anxiety attack or became too stiff
to move, even worse, what if I didn’t have anyone to talk to? Anyway,
life was kind and all three concerns were unfounded. We had one stop for coffee,
but guess what? My wheelchair was behind all the luggage, so one of the passengers
helped me off the coach, which enabled me to have a cigarette (I can hear you
all groaning at that).
The next stop was Victoria Station, where I had to change coaches. David had organised a porter to help me as I had my wheelchair and a suitcase, and had the nightmare of having to cross a road. However, no one turned up, so the driver took my case for me while I was going hell for leather in my wheelchair trying to keep up with him.
It was when we arrived at the other side he said he liked the little fluffy dog on the top of my case. What fluffy little dog? I asked. Yes, you’ve guessed it — it was the wrong case. He raced into a waiting room and found the guy who had taken mine. He was Japanese, so I bet he would have had a better video camera, MP3 player etc in his case than I had in mine. The downside would have been that I would not have had my medication. I still can’t decide if I got the best deal…
I had a 45-minute wait for my coach, so I decided to go and get a coffee. I left my case in the care of a member of staff. I then decided I could not get to the café with my big handbag, so I left that with him too. Am I naïve or a complete idiot? I returned, only to find later that £10 was missing out of my bag. Oh well, at least the longest part of the journey was over.
After nine hours on the road, I was met by Claire. I had a lovely week. I even managed to spread the SMS word. There was a band playing in front of a bar on the promenade. I asked Claire to leave me there. I sat alone with a bottle of beer, feeling like Billy-no-mates. After about 15 minutes a guy on the next table asked if I would like to join him and his friends (obviously a rhetorical question…). So bottle between legs, I wheeled myself over to them. It turned out two of them were actors and the other an artist, so we had a lot to chat about. They had asked what my problem was and I told them. One of them told me the best way to try and get some TV exposure. We shall see.
Ditchling was having an open gardens day. One of the gardens was Claire’s next door neighbour, a renowned artist in Brighton called Phillip Dunn. I asked him if he would donate one of his pictures to auction for the SMS charity. He said he would. So here’s hoping!
I had seen my neurologist in March and asked if I could try a plasma exchange. I got a call on my mobile on the Friday while I was in Brighton. They wanted to admit me that day. Obviously, I couldn’t make it. My return coach was booked for Sunday, and there was no way I could have wheeled myself and a suitcase up the M23, around the M25 etc, and all the way to Yorkshire. Anyway, I was having too much fun. I also had other commitments, so I was told to ‘phone them when I was free. The return journey was a long one. I asked the driver if he would slow down as we passed Lords cricket ground as I wanted a ‘photo. He did, and I took the picture. I had also asked if he would clean the window, but that was one request too many! I was shattered when David met me at the end of the journey. When we got home, all I could do was fall into bed.
The following day I began a course for diabetics called DAFNE (Dose Adjustment For Normal Eating). It was very informative, but when Thursday arrived we were told how to adjust our insulin for sick days. Maths is not my strong subject, plus sitting more or less 9-5 for four days was more than I could endure, and I had to leave the room in tears. I think everyone was surprised to see me return the following day. We all took food in on the Friday, but I was not confident enough to eat anything that contained sugar. The whole point of the course was to teach us to eat food that non-diabetics eat. We are all to keep a diary of our insulin and food intake and meet up in about a month to compare notes.
The following week I spent at home doing the usual things, and chilling out. We had an SMS committee meeting on the 27th. We talked about finding a patron, getting a logo, fundraising and raising awareness.
During the last couple of days of the month I had my hair cut plus all the bits that show waxed in preparation for my holiday in June. So, all in all it has been a busy month. We have also started to have the garden landscaped. It will be easier for me to get around. No lumps and bumps to catch me out. It will be low maintenance, too.
June 2006
For the first time I am not panicking about being ready on time. No ‘have
I got this, have I got that’. I was ready and organised! Sorry, I have
jumped in in the middle of the story…
June 1: I was going to the Costa del Sol for a week with my brother Martin, his wife and their son Jack, who suffers with autism. It was one of those bargain holidays one just can’t resist. You know the type I mean — the flight is booked, but one doesn’t know what the hotel will be like. I had visions of being half way up a mountain, on the 10th floor with no lift, but nothing was going to put me off the Mediterranean sun.
So, with wheelchair and walker in tow, we set off on our all-inclusive holiday to San Pedro. We were the last drop off and were told we had got the best hotel. She was right. It was all on one floor — obviously a bonus for anyone with a wheelchair. The food was OK, three swimming pools, games room, tennis courts etc. Entertainment each night and a free bar which was open from 10am until midnight, which meant I could top up my small vodka bottle each day! Of course, I spent most days playing tennis and taking part in all the activities which involved running around — I wish!
There were three things I wanted to do during the week. They were to paddle in the Med, dive into a swimming pool and go to Gibralter. All of which I achieved. The first thing I managed was to dive into the pool, although I have to admit it was a daunting thought, so I had an extra swig of vodka and did it.
Not content with that, I kept doing it. My video shows me holding on to my wheelchair, fingers crossed and just going for it. There was no stopping me, I was like a woman possessed. What onlookers may have thought I don’t know and don’t care.
The next thing on the list was Gibralter. We were so lucky, there was no queue getting in or out. I have to say I was a bit disappointed with the shopping areas. Don’t believe it when people tell you things are inexpensive because of the lack of tax. I think they have got wise to that and have simply put up the prices. We drove up the rock to see the Barbary apes. I was very nervous to start with, but as soon as they had grabbed the bag of food from Sue, they ‘knew’ we had no other food to give them and they left us alone. How do they know not to grab one’s video or empty (of food) bag? It was hilarious when we saw an ape jump into an open car and steal a tube of Pringles. It was even funnier seeing two terrified boys screaming as they jumped out of the other side…
I also managed to see some of the caves. What a beautiful sight. Of course, I couldn’t see an awful lot as I was in my wheelchair, but I did manage to see an enormous area where concerts are held. I bet they don’t need a PA system as the acoustics are spot on. If only there had been a concert while we were there — I could have listened all day.
My third objective was fulfilled after we sat by the beach eating freshly caught sardines. Martin took me to the water, where we had a paddle. The only problem was the wave neither of us saw coming. Yes, we both got soaked (why does nobody have the video running when these things happen?). However, by the time we got to the hotel we were dry.
A downside of the holiday was that I was not able to walk as much as I thought I would have been able to.
Another incident took place at the hotel. I was sitting by the pool and felt a call of nature coming on. I knew there was a loo at the other side of the pool, so off I went in my wheelchair. What I hadn’t realised was that there were two steps to get down and no rail to grab on to. The anxiety started and I became very stiff. A woman offered her help, but it took a long time to get out of the chair, down the steps and into the loo.
She waited for me to come out, but when I emerged I was on all fours, I could not stand, and even with her help, it took even longer to get me back to my chair. It was made more awkward as she didn’t speak English, and I couldn’t speak German. After thanking her (not knowing if she understood what I was saying), my first thought was to find one of the family, my mini quest for a comfort blanket. I was still shaking when I found Sue and had to put on my sunglasses to hide the tears. If you are not a sufferer of SMS, an incident like that must sound a bit pathetic. If you are a sufferer, then I know you will understand exactly what I was feeling.
On to something more pleasant. I kept bumping into Bob, the Thomas Cook rep. Actually, I think he was stalking me (if you read this Bob, I am only joking). He had injured his leg and it was quite swollen. As a former nurse, I felt it was my duty to look after him and told him to go to the chemist and get a particular type of bandage.
The following morning I got him bandaged toe to knee, and kept an eye on him all week to make sure he obeyed my instruction to keep his leg elevated. During one of our chats he asked me what my problem was — I thought ‘great, I can raise awareness in Spain’. The top and bottom of this is that he told me to write to Thomas Cook’s head office and ask if they would be willing to help the charity. It is another job on my list of ‘things to do’.
The holiday was over and we arrived at Malaga airport for our flight home. One good thing about being disabled is that one is taken to the front of most queues. The flight home was at 11pm which would have meant (taking into consideration the time difference) I would have been tucked up in bed by about 1.30am. But it was not to be. We were given various reasons why our flight was delayed by five hours. It was no fun at all sitting in the airport for hour after interminable hour. What should have been, door to door, a five-hour journey ended up taking 16 hours. Guess what I did for the weekend? Correct, sleep.
I rang the hospital (look back to May if I have lost you) on the Monday morning. The doctor I needed to speak to was not on the ward, but the nurse said she would tell him I had called. I heard nothing, so I rang again each day. Same story. I finally got hold of him on the Thursday afternoon. He told me had not received any of my messages. However, shock and horror, he told me I could be admitted that day. I asked him what time he wanted me in, and he replied “now”.
He was a real sweetheart, and was the doctor I managed to wrap around my finger when I had intravenous immunoglobulin treatment on the same ward in July 2004. I asked if I could leave it for a couple of hours and he agreed. I then pushed a bit more and asked if it would be all right if I went in after the England World Cup game that night. I think it was at that point he remembered me and said “Oh all right then”. David took me in that evening and I had routine bloods taken the following day.
From here on, remember that doctors and nurses don’t like having a nurse as a patient. When I asked what blood tests she was taking, she said “routine tests”. I had the audacity to ask what ‘routine’ tests they were. She did tell me, but was obviously not impressed when she saw me making a note of what they were. There was nothing else needed to be done before Monday and so I went home for the weekend. I had a central line put in on the Monday. It is quite a thick tube placed in the neck for the plasma exchange. I was to have six exchanges and that would mean being in hospital for just over two weeks.
The procedure took place at the Seacroft hospital in Leeds. It is a specialised day unit, dealing with blood products, which is why I had to travel back and forth. I cannot praise the staff there enough; they were wonderful. However, I did not complete the treatment and discharged myself from Hull Royal Infirmary on Monday 26th — one week after admission. I can’t go into details at the moment as my two-page email of complaints is being dealt with by the hospital authorities as I write.
Only four more days to the end of the month and I am going to spend them relaxing. Well, that was the plan. There was a knock at the door on Wednesday afternoon. It can’t be one of my ‘coffee mates’, as they just walk in. It can’t be the Betterware man, as he also walks in (I knew him years ago when I was a practice nurse and he was a medical rep). It wasn’t the window cleaners either (they get a drink too). It was a friend I hadn’t seen for a long time. She had come to ask if her mum could stay with us for a few days. Her husband had just had a serious operation, and it was a long way for her to visit each day. So we had a guest for three nights. She was good company, good fun and even better than that, she cleaned my fridge after having washed up!
We went food shopping on Saturday and she wanted to buy me a gift to say thank you. I had watched a film called Pay it Forward. The story was about a class of children who were asked how they could change the world. One boy came up with the idea of helping three people and each in turn had to do the same. A pyramid effect. So I put this idea to my new friend, and declined the offer of a gift. Of course, she now has to pay it forward. Wouldn’t it be wonderful if the idea really caught on?
July 2006
It’s been a funny old month. I am still waiting for a reply from the hospital
with regard to the letter of complaints I sent.
Eloise came to stay with us for two weeks, to convalesce after an admission to hospital. During her stay, the two of us went to the Humber Bridge’s 25th anniversary. There were lots of things going on and loads of charity stalls, which made me wonder why I hadn’t thought of getting one myself. Not to be put off, I managed to enlist the help of the Humber Rescue team. The idea was they would take me (an alleged non-swimmer) out on their boat. If we didn’t collect enough money, they would leave me out there! Once I had written a few words about the event and our charity, one of the Humber Rescue guys pushed me to the alcohol /music tent and asked the DJ if he would read out my note. He told us he would have to ask his boss, but he wasn’t there (typical man). I told him, with the sweetest of smiles, that if that was the case, he could do it and his boss would be none the wiser.
At 5.45pm Eloise and I were waiting to be taken out on the river. I asked a bystander if she had a video camera. She didn’t, but her son did and he agreed to video us. We exchanged phone numbers so we could get a copy and they duly sent the contents to Tony (our web guy and treasurer). So watch this space, well not this one obviously, as it is just my diary, but when Tony has the time he will put it on the site. We managed to raise £40. Not a lot of money, but we had great fun doing it — especially the bit where I was assisted into the boat by two rather hunky Humber Rescue guys!
Our dog, Ollie had the canine equivalent of hay fever and had to have a tablet each day for a week. My bottle of diazepam was on the table next to his medication. Yes, you can guess what’s coming next. I gave him diazepam instead of his doggy tablet. He was fine, but he slept all afternoon! From time to time his little legs were twitching and I heard the occasional whimper. He was probably dreaming of chasing and catching rabbits, as dogs do. He is a bright dog, so I am going to put it down to an executive power nap, which he obviously needed after the energy he must have used up during his dreams.
I went to see Simply Red, and managed my second ‘Pay it Forward’. I overheard a couple asking how they could get to the centre of Hull. I’m not sure where they had come from, only that they were staying overnight. I arranged to meet them after the concert and gave them a lift. They wanted to pay me, but I declined their offer and explained the ‘Pay it Forward’ concept. They seemed enchanted with the idea. Let’s hope they, too, pay it forward.
August 2006
I have now got our fund raising event underway. The hall and the band are booked
for October 14th. I have to say a big thank you to Martin Pierson, a friend
without whose help I shudder to think how I would have managed. We are incorporating
an auction into the evening, but I am finding the most difficult and time-consuming
part is getting items donated. However, whatever happens, it should be a good
evening.
I went to see the singer Benny Gallagher and asked for his help with the forthcoming event, and for ideas about getting a patron. He seemed to listen with interest, but unfortunately I have heard nothing. It’s such a shame because he is the only person I can talk to who knows and works with so many big people in the music industry. On the other hand, I am not very good at face to face begging — I get tongue-tied and sound like a complete idiot. Actually, that is a complete lie. I think I could sell ice to Eskimos if I put my mind to it. I seem to founder when I plan what I am going to say. I think I have much more cheek and get a much better result when I don’t have time to prepare and just let it happen. However, the music, as usual was good!
I went to Spain (again) for a week. With 18 family members! We had gone to scatter my mother’s ashes in the Med, close to where she had lived for many years. Christopher went with me (David had already booked the following week off work). I only decided to go five days before departure because of pressure from one of my brothers. It was a horrid week. We stayed with one of my brothers, his wife and their daughter. I spent a lot of the time stiff and anxious, and two embarrassing episodes of crying over something but I don’t know what. For some reason, I just felt so vulnerable.
I interviewed a young woman for the job as my carer. She lasted one day, as it seemed her diary was always full when trying to organise days and times when I would need her help. I now have the job of interviewing all over again, which I have done. I have employed two women who are both hard working and good fun. They help me with shopping and housework. In fact, they are both willing to ‘work’ with me enabling me to do things I would not feel comfortable doing if I were alone in the house.
September 2006
I am proving the point I made last month about getting my way when I have not
had time to prepare. I was at the folk club (the same one as last month, my
local). I went to see Billy Mitchell and Bob Fox. Off I went into the dressing
room to have a chat and although they were both eating, they asked me to pull
up a chair and join them. They offered me some of their food. Naturally I declined,
as one has to watch one’s figure! Or was it the fact that I was still
stuffed from my evening meal?
They were great fun and so witty. As a general rule, the further north one goes, the more fun the people are. I think I have made a similar comment before, so my apologies to the southerners who may be reading this. The only problem was that they talk more than I do, which meant I looked like a goldfish — mouth open, mouth closed, and what made things worse was they could see my dilemma, and seemed to find it very amusing. They both took an interest in my talk about SMS and each of them gave me a CD for the fund raising event next month.
We had a visit from one of the group members and her husband who had been visiting friends a little further north and made the time to come and see us. Thankfully it was a sunny day and we were able to sit in the garden with a glass of vino.
Our treasurer (and web guy), Tony, tied the knot on September 16 with the lovely Tanya. We were invited to the reception which was held at a place called Honeysuckle Farm. It’s a working/petting zoo. Typical of Tony. It would not have entered his head to use a ‘normal’ venue. It was good fun as the children played in the hay and were entertained by the animals. I couldn’t resist the animals either, until a kid (baby goat, not a small child) bit my finger. In fairness to the little beast it probably thought I had some food in my hand. The adults listened to Tony and his band, which included Tony’s wife’s dad. He’s a vicar and barely half an hour earlier was in full vicar dress, giving the happy couple’s blessing.
I have been doing a lot of thinking this month and have come to realise that my visit to Spain last month proved just how totally reliant I am on other people. I blamed one of my brothers for so many things while we were there. Yes, perhaps at times he could have shown a little more consideration, but if someone does not know the extent of what an SMS sufferer feels or needs, how do they know what to do for the best? It has made me realise I cannot go away unless it is with someone who understands my disability.
October 2006
The fund raising day has arrived! I have spent the last two months writing or
‘phoning for items to auction, and worrying there would not be enough.
How wrong can one be? The day before the event I received an email with 14 more
auction items. As fantastic as that seems, it put us in an awkward position.
David spent almost all day making lists of the most appropriate items to auction
as we only had half an hour allotted. Christopher fell hook, line and sinker
for one of the girls in the support band. Typical. We then had the auction.
David did a really good job as the auctioneer. He also managed to grab us a
few extra minutes, which meant he was able to ‘move’ more items.
The main band, Kinked, (a tribute band to the Kinks) were next on stage. We have seen them before and once again they did not disappoint. In the interval we held the raffle. I think the evening ended about midnight. Apart from the fact that it was a really good night’s entertainment, we made a fantastic £950. We still have a number of items left, but I really need to recover from this one before planning the next.
David, Christopher and I went to Ibiza for half term. It was a nice hotel, super food, good evening entertainment and had easy access to the beach. After the first day we hardly saw anything of Christopher as he spent most of his time in the pool with new-found friends, including a good smattering of young ladies, one of whom he called “hot girl” who had a fantastic figure — especially for someone only 13 years old!
I wanted to do some snorkelling and had to walk (does pushing one’s wheelchair count as walking?) into the closest shopping area to buy the equipment. I wouldn’t mind, but we left two lots of snorkelling gear at home. Anyway, we got back to the hotel and headed straight for the beach. I held on to Christopher until it was deep enough for me to stand alone. Off I went and saw some beautiful fish. I went again the next day. Christopher was already in the water, so I hung on to David’s arm until we got to the water’s edge. He was videoing me as I crawled into the water. I didn’t give a second thought to the fact that the water was choppy and that the waves may pose a problem. I was OK with the first few, but the further in I got, I realised how anxious I was getting. The anxiety gave way to panic, and although David was filming me, he couldn’t see my distress through the eyepiece. I think he thought I was waving at him. It was only when a woman came to my rescue that David realised something was wrong and stopped filming (shame, really, as we could have sent it off to ‘You’ve been Framed’).
At this point I have to say David will not even paddle in the sea as he believes there is a shark out there with his name on it. It stems from watching the film ‘Jaws’. We all know he is not a child, and I have sat him down and explained the shark in jaws was made out of rubber and honestly and truly was not real, but he still doesn’t believe me (big woos). Anyway, I am now convinced the Med is determined to get me at some point. It seems every time I put my foot in, it thinks “Here comes Liz, what shall I try this time?”
David and I went to try out the archery. Although a strap was put around my forearm, I still managed to get an enormous bruise most of the way down my left arm. I didn’t look at the scores, but I knew I hadn’t done very well. Having said that, guess who won the rifle shooting! I should have got extra points, as I was sitting in my wheelchair. The guy who won the men’s competition only scored seven points more than me. The irony is that he is part of the Metropolitan Police firearms team! Anyway, I had to win to keep up with David, who won the event the day before (although he didn’t score as many points as me…).
As those who have patiently read this diary will have come to realise, I am either brave or stupid. To be honest I don’t really know which it is. As I said earlier, the evening entertainment was good. We saw there was a karaoke night on the Thursday — I was happy, but David and Christopher both groaned as they knew I would be signing up for it. I looked through the list of songs and decided to try ‘You’ve got a Friend’ (James Taylor). However, the machine couldn’t bring it up. So I tried ‘That don’t Impress me Much’ (Shania Twain). The problem was that the machine only had one line at a time on the screen and unless you really know all the words you make a complete idiot of yourself — as I did. I did a disappearing act for a while, but not one to be beaten, came back later and sang (sort of…) ‘There’s a Kind of Hush’ (Herman’s Hermits) to rapturous (and sympathetic?) applause.
One of the things on my list of ‘things to do while on holiday’ is to dive into the pool. David was nowhere to be seen (probably having a siesta somewhere). I saw Christopher and handed him the camcorder. My only problem was that I had nothing to hold on to. The handrail by the steps was too low, so I pulled my wheelchair up the ledge next to the pool and after the struggle, discovered that would not work either. As you know, I am not backwards in coming forwards, particularly when determination is in the forefront of my mind. So with my usual cheek, I waited for the first good-looking guy to wander by and asked if he spoke English, which he did. I told him he was in sight of a great opportunity — to hold on to me. I needed him to stand behind me with his hands on my waist (!) while I perched on the edge of the pool. Surprisingly, he said OK. So, with two strong hands clutching me from behind and holding me steady, I counted down “Three…two…one…DIVE!” and I plunged into the pool. Perhaps not my most elegant entry, but I did it. And my new friend seemed none the worse for the encounter with a brazen stiff woman.
On that note, I will leave October with a lot of happy memories, although I must admit (even to myself) that this year has seen my condition get worse and worse. I am so much more reliant on my walker, my wheelchair and people to help me do the things I used to be able to do reasonably well (relatively speaking) just a year ago. What does the future hold? It just doesn’t seem worth thinking about. But at the same time it’s hard not to… and that’s very frightening.
November 2006
Good grief, November already, and it’s still relatively warm. If this
is global warming, I’m all for it! Just going back to last month. We got
back from our holiday on the last weekend of the month. Two days later I was
telling someone that I never suffer with coughs or colds. Two days after that
comment I felt as if my throat was made of sandpaper. The next day the cough
started. About a week later, and two or three sleepless nights — not me,
David, because of my coughing — he insisted I went to see the GP. Anyway
it turned out I had bronchitis. So a 10-day course of antibiotics, and blood
sugars up and down for a couple of weeks were not my idea of fun. It also meant
the auction, which was provisionally booked for November, had to be called off.
However, we did manage to hold our committee meeting, which is held at my house. Naturally the month could not pass without something happening which involved me doing something I shouldn’t. It was a couple of days before the committee meeting. We had had a new door fitted between the garden room and the hall, and I desperately wanted to finish the paintwork before Saturday. Despite my promise not to use stepladders when alone in the house, I conveniently ‘forgot’. Of course, the inevitable happened — I got stuck on the second step (I truly believe the Mediterranean and the second step on my aluminium steps are out to get me). I had been happily sanding the top of the doorframe when it happened. I found myself well and truly stuck. Fortunately my back didn’t spasm and I was not rigid. It was my left leg that would not do as it was told. I had my right hand on the steps and decided to hold onto the top of the door with my left. I hopped the steps to the right, hoping I would be able to grab hold of a door handle, only to find I could not let go of the top of the door. I made a few attempts to get back to terra firma, all of which failed.
To understand what I have just described, you had to be there. I decided to press the lifeline buzzer that was round my neck — only to find they could not hear me as the Bob Dylan CD I was listening to was a bit loud, and one of the speakers was next to the lifeline box. In all I pressed the buzzer three times. A few minutes’ later help arrived in the shape of a neighbour, Billy. He arrived in pyjamas, one sandal and a pair of crutches. Apparently he had been in bed as he had had an operation on his foot the day before. When we saw each other all we could do was laugh, as I was stuck in the doorway and he could not physically help because of the crutches. However, the mere fact that there was human contact was enough for me to loosen up enough to get to the floor.
We had just got in to the kitchen when the ambulance arrived and in came two paramedics. They looked at the two of us. I was on the floor, holding onto the table leg, rather pale and shaky, while Billy was standing in the afore-mentioned state. They asked which one of us they had come to attend. Yet again Billy and I laughed. Once established it was me, they asked if I wanted to be taken to hospital. Sorry, but I can’t write what I actually said to the ambulance crew, as the hospital in question was the one I had discharged myself from in July. Speaking of which, I didn’t tell you I eventually got a reply to my two-page email of complaints. I won’t bore you with the contents as they addressed some points, ignored others. One point I found both sad and amusing was being told that all the nurses were attending a programme of ‘customer care and communication skills’ The mind boggles! I was going to take it further, but this SMS ‘job’ seemed to take priority.
When I was nursing, we had an auto-valet where we changed into our uniform. We trained at the school of nursing, which was coupled with working on the wards. The risk of cross infection was drummed into us. However, nurses are now trained at a university. When nurses arrive and depart the hospital, they are in uniform. Is it just me, or does anyone else wonder if that could be a contributory factor to the rise in MRSA, c-dif, etc?
December 2006
It must seem so strange having read November’s entry to begin this one
by saying how immobile I have been. I have been using my walker around the house,
and sometimes that has not been enough. I have found myself holding onto the
walker, and getting around on my knees. The pain in my lower back has, at times
prevented me from doing the simplest things like emptying the dishwasher.
When I am in that state I get so hot — or perhaps they are menopausal ‘tropical moments’? Anyway, whichever, I am too stiff to remove an item of clothing to help me cool down. Yet again, the only thing that seems to help is a shot of vodka. Give it 10 minuets and I start to loosen up.
I have decided I don’t like December. It’s too busy. Fortunately I bought a lot of items from ‘Next’ in last year’s sale, which meant there was not a lot of Christmas present shopping to do.
We and a few other family members spent Christmas day at my brother’s house. It was a lovely day, but I felt cheated knowing I could not help with the clearing up. The best I could manage was to pass food to others at the dinner table. Although on the up side I saw David hoovering up at about 10 30pm. Sadly, I didn’t have my camera handy!
Our wedding anniversary between Christmas and New Year came and went (uneventfully) and, for the first time ever, we did nothing on New Year’s Eve. I felt most sorry for Christopher. He loves partying and missed out big time. We did have celebratory bubbly and poppers at midnight, but it’s not what we are used to. So one of my resolutions next month will be to make sure we will party this time, next year. One last thing — I can’t believe I have not been to a concert for two months. I am getting withdrawal symptoms!
January 2007
If there is anyone reading this who has an illness, which is neither progressive
nor painful, I would be willing to do a swap. Any offers? No, I didn’t
think so. For quite a long time now I have been waking up at stupid O’clock
in the morning. I get up, do a blood sugar, get out the daily tablets, have
my insulin, and put on the TV. I suppose one good thing about it is that I can
watch the programmes I recorded the night before which the guys don’t
want to see. I have spoken to my GP and asked for, and he agreed, for me to
try Gabapentin again.
I have been taking Gabapentin since the 8th, and have gradually increased to 300mg three times a day. My back is a bit better, and not quite so painful. The downside is that I am in a state of narcolepsy most of the time. I have also had bronchitis again, so I was not sure if the antibiotics plus the 900mg of Gabapentin were to blame. However, having finished the antibiotics, I was still falling asleep at the drop of a hat. It was a potentially dangerous situation as it meant I could be asleep and not take my medication or check my blood sugar. I am now taking 300mg in the morning and the same before I go to bed. I can cope with the dosage, and my back is marginally better, but no so good that I would want to shout about it from the hilltops. All in all, it has been a fairly boring and miserable month.
February 2007
I have been to a concert — the first in three months! Hi-hip hoorah! I
saw Chris Smither, one of the best folk musicians around. I don’t know
why I write about these things, as this is meant to be a diary about my life
with SMS. Having said that, I can’t function very well without a regular
music fix.
So on to SMS and me. I told you I now have carers. There have been a couple of changes, but I now have two fab women. They both prefer to be called PAs (Personal Assistants). To be honest, I quite like it. It doesn’t automatically make one think I am disabled. In fact, one may think I am a high flyer — unless I happen to mention it when I am in my wheelchair. Having said that, I could still be a high flyer in a wheelchair…
Sally comes Mondays and we do the weekly supermarket shop. Carol comes to order. What I mean is, she is very flexible. She is into DIY, which is great as we get up to all sorts of things. David comes home from work and his challenge is to look around the house to see what we have done. If he doesn’t spot anything, the forfeit is he doesn’t get fed (only joking). Anyway, February has been and gone without any great catastrophes.
March 2007
I have had another stopping breathing episode. Thank heaven David was home.
It was almost the same scenario as the last time (January 2006). I had got up
at silly o’clock in the morning again (something I seem to keep doing).
I was sitting in the living room, watching the TV with a cup of tea in hand.
A call of nature arrived, and I tried to stand up and make my way to the loo.
However, my body was having none of it. Perhaps it didn’t realise I had
put the programme on pause and would be able to carry on where I had left off.
I managed, with the aid of my three-wheeled walker to get as far as the hall.
David was coming down the stairs at the same time as I had to get down on my
knees.
The panic set in and my breathing stopped. David grabbed my hand as I held on to a door handle with the other one. He was asking me what was wrong. And what he could do to help. All I could do was point to my mouth. He stayed very calm and tried to reassure me I would be OK. I suppose the time like that was actually quite short, but to me it seemed to go on forever. I’m not sure how long the bruises to David’s hand were visible, but he didn’t complain.
I am now getting a bit phobic when in the hallway. Because I know the reason, I walk in there when I need the loo, and walk out again. I give myself a few moments, and almost let it be my decision when I go. Does that make any sense to you? Sorry if you are left rather confused, but I know what I mean. If you really have a problem with it, then instead of doing a crossword, try and work it out.
I have now reached my mid-fifties. Included in my list of presents were a set of chisels and an electric sander. To anyone reading this who gave me flowers or ‘smellys’ — thank you, but the chisels and sander were my favourite gifts. On my better days I will get so much pleasure using them.
I had to have the electrician in one day. He turned everything off at the mains and I got a call from the help-line people asking if I was OK! I explained what was happening, and got a rather curt reply. I told the electrician they are always abrupt (but not in those exact words) only to hear the person from the life-line say “So you are OK then?” I thought they had hung up! On a scale of one to 10, how embarrassed do you think I felt?
April 2007
I have been so busy, it is now June and I have to rely on my note pad and the calendar to remind me of things that have happened. There is no point in trying to remember as my memory is only slightly better than a goldfish. On the subject of goldfish, all of mine are called Bob. – Well, have you ever watched them? They swim about and all they appear to say is “Bob”.
I had an e-mail from an organisation called Orphanet. They keep a database of rare conditions throughout Europe. Did you know there is only one other support group in Europe? Probably not. They are in Germany and if anyone is interested in looking at their site, the address is www.stiff-man.de I have been in touch with the German support group and hope to work together if the language barrier can be overcome. As I said earlier, my memory is severely lacking and I can’t think of anything else to write, but my mouth is still working on overdrive.
May 2007
I have been in a magazine called Top Sante this month. Just the usual stuff to help raise awareness. The only problem is that don’t seem to want to send back my ‘photograph. It was a professional picture, and my dog (Ollie) and I looked reasonably normal! Perhaps that’s why they didn’t use it.
More importantly, at long last the article I wrote somewhere back in the stone age has at last been published in the Journal of Diabetes Nursing. Being interviewed or writing for a magazine is one thing, but a medical journal is in another league. They needed acknowledgements for everything I had written. I just wish I had realised before I started to write it. All the information I had purloined had been neatly put back in my filling cabinet. Or if you want the truth — it had all got’ lost’ along with everything else in my study. I spent a full day trying to sort things out. I found lots of things I thought had been thrown out — obviously by anyone other than me. I even found an empty packet of cigarettes filed under ‘c’ (I must have been having a hypo when I did that).
In the past I have done some crazy things during a hypo. Once, when I was agency nursing, I worked nights at a factory. By about 1am I would be fast asleep and would leave the door open and any injured member of staff would come in and wake me up. I always set my alarm clock for 5am, which gave me an hour to refresh myself before the day staff came on.
One particular night I must have had a hypo, but I must have been coming out of it when the security guard came in for a cuppa. Instead of which I had poured him a glass of what I thought was Lucozade — only it was Savlon. He knew I was diabetic, and that there was something wrong, so he locked up and drove me home. The following night I looked for my alarm clock, but it was nowhere to be found. A couple of weeks later I decided to tidy the filing cabinets, and guess where I found it? Yep! filed under ‘c’. (presumably ‘c’ for clock!).
Another incident was when I woke up during the night (at home this time). For some strange reason I thought the bed — which I had made at a woodwork class — was going to break and I would fall through it, so I got up. The next thing I knew was when David brought me in from the garden. It was about 4am. I was wearing my dressing gown, one of my slippers and one of David’s. I think I woke half the neighourhood up as I was chanting “Arthur C Clark” over and over. David asked me what I was doing, and my reply was “I’m waiting for the paper boy.”
And there’s more… I got up one morning and decided I wanted a slice of toast, but instead of putting the bread in the toaster, I put it in the kettle. Once the kettle had boiled, I put my hand in to get my toast. Yes, I scalded my hand, but I didn’t feel any pain. I just cried because my toast was soggy! David yet again to the rescue. What would I do without him?
My back is giving me more problems. If I sit for any length of time my back is so stiff I can’t walk. Mornings are generally the worst time for any SMS sufferer, but I find that late evening is almost as bad. I won’t go to bed after David because I am afraid I will not be able to make the journey from the sofa, through the dreaded hallway, and up the stairs.
On a happier note, We have been to a wedding this month. The reception was held at Hull University. The only problem was that to get to the area meant stairs, stairs and more stairs. I thought disabled access was compulsory in most places in the UK. Actually it was, but it meant going all the way round the building. After pushing myself in my wheelchair, I felt my pecks were comparable with Arnold Swa (I don’t know how to spell his surname, but you know who I mean). Before anyone wonders why David didn’t help, I will not let anyone push me, unless it is absolutely necessary. Anyway, it brought my blood sugar down and I was able to eat a lot of the yummy food. Three glasses of champagne later and I was giving children I had never seen before, rides in my wheelchair, which served two purposes — I was the kids’ favourite adult, and their parents had a bit of respite. I even managed a few minutes on the bouncy castle.
David and I went to see the Who. It was a great event. Ringo Starr’s son, Zak played drums. Sorry Ringo, but your son is better than you, but not as good as the former Who drummer, Keith Moon. It has been quite an expensive month motoring-wise, as I managed to get a speeding ticket — I was only doing five miles an hour over the limit. Anyway, I had to pay £60 and got three points on my licence. To top that off, I managed to get two parking tickets (£30 each). David was not a happy chappy when he saw the credit card statement at the end of the month. Obviously I had ‘forgotten’ to tell him about these incidents and I hadn’t realised he checks his statements. Whoops! Anyway, after he cooled down, I explained that a husband’s role in a marriage is to open and pay all bills, even if they are addressed to me — then I made a hasty exit.
June 2007
Where do I begin? Well I suppose the beginning of the month would be the most logical. We had our charity committee meeting, which went well. The only problem was one of the members, Pam, well not Pam herself, but her car. She had driven up from London and during the journey she was having problems with her brakes. We had to call out the AA (no, not alcoholics anonymous – of course that would have been for me!!). When Les, the AA man arrived, he told Pam she would have to be towed back. Once he had had a coffee and got everything in place, the kind soul that I am asked if he would like some of the biscuits etc I had baked. “Yes please” was the reply. So all nicely wrapped up, plus a small bottle of squash for the journey, I handed them over, and said “that will be £10”. I don’t know if it was shock or if I had inadvertently hypnotised him, but he put his hand in his pocket and handed me a nice crisp £10 note (just for the record, the money is now in the SMS bank account, not my personal account).
The following week the window cleaners were, as per usual, having a coffee here and I recounted the AA man story. They coughed up £3! A little on the stingy side, but £3 is better than nothing. Who will be my next target I wonder?
The first week went well. Actually, the second week was OK too. I had an operation to correct droopy eye- lids. The medical name for the op is a blephroplasty. I spent the day before stressing about it, and although I had to be there at 6.30am I felt very calm (I didn’t have any stress left in me, after yesterday). The op was successful, and I was home by 2pm.
The following Wednesday I went to the pain clinic and endured nine intramuscular injections in my lumbar region with a substance called Bupivacaine hydrochloride. The following day I was in more pain than I had been before the injections. My back was in spasm most of the afternoon. I was rigid and I don’t know why, but I could not stop crying. I had been trying to answer some e-mails during the afternoon, and found I could not get out of the chair to stand. I didn’t want to ‘phone David I didn’t want him to know, as he would worry and feel he would have to come home (again). I really believed I would feel better by the time he got home from work in the evening.
I was in such a state, I had to have some help, and I rang one of my brothers — Steve. He came straight over and rescued me out of the swivel chair, on which I had somehow managed to push myself backwards into the kitchen. He stayed with me until David came home from work. I was still a bit shaky. I could not cook (I don’t enjoy cooking the usual family meals anyway, so a take-away seemed a fitting exchange for the day I had had).
We had been invited to a party on the Friday night, but I just could not bear the thought of getting showered and changed, as my back was still too stiff. David and Chris took quite a bit of persuading to go without me. I spent the evening on the sofa with every appliance known to man (or SMS sufferers) close to hand.
Saturday was not too bad during the day. We ate out in the evening and I spent what was left of the evening watching TV. When I decided to go to bed at 11.45, I found it difficult getting off the sofa. I managed to get into the hallway, and got hold of my walker. I was about to go into the study to give David a kiss goodnight, when I found I could not move. I tried to stay as calm as possible, and told David I was stuck. It was the beginning of another panic attack. As David held me, he told me to breathe slowly while counting down from 10. We both felt the priority was to get me into bed.
The journey up 13 steps took almost an hour. I would manage two steps on my bottom, then start to panic, calm down, turn round, panic again. On and on it went. When I finally reached the top of the stairs, I could not turn right to go toward the bedroom. With a lot of help, I managed to pull myself around to the left, and held on to the newel post. I also had my other arm through the spindles, holding on as tightly as I could. More panic attacks followed. With each one I could feel my breath stopping. It was only because David was there to calm and reassure me that I didn’t actually stop breathing. I had been sitting on my legs, so of course I got pins and needles.
Eventually I managed to kneel up, let go of the newel post, and with that hand, hold on to David. The only thing I could think of that may help me was, of course, the vodka! However, as David began to move, the panic started again. He had to resort to shouting to Chris, who was fast asleep. After about five attempts to wake him, he appeared, bleary-eyed and didn’t seem to have a clue what was happening.
As you will know by now, there is almost always an amusing aspect to my SMS episodes, so here goes. David asked Chris to get the vodka. We both wondered why he was heading for our bedroom, and had to tell him again why we had got him out of bed. Still half asleep, he went downstairs and into the loo. After he had played the extended version of Handel’s water music, he then went into the kitchen. We could hear him moving around for what seemed to be ages.
David shouted asking what he was doing. He said he could not find my vodka glass. “Just bring the bottle” David replied. Chris came up the stairs with the pasta jar!!! After a few ‘wake up’ words, Chris brought the vodka, plus a pint glass — good thinking!! (end of ‘amusing aspect’). I don’t know how much I drank, except to say it helped, as I was able to let go of David, while he got a chair for me.
By this time all I wanted for someone to give me an injection that would knock me out. David rang the doctor. Surprisingly, he had heard of SMS. He said the only thing he could do was to send an ambulance. As soon as I heard those words, I yelled a few obscenities about being ‘man-handled’, and ending up in the dreaded Hull Royal Infirmary. I remember David asking the doctor “Did you hear that?” He obviously did, as by the short and quiet exchange of laughter I realized the doctor sympathized with my predicament. Therefore, the only advice he could give was to tell me to breathe into a brown paper bag. I do suffer with anxiety, and I think that makes me more fearful of, well everything.
For me, the anxiety, which leads to real fear, is the worst aspect of SMS. I can usually cope with the pain of the stiffness and spasms. It was 2.15am before I was ‘safely’ tucked up in bed, and all I could think about was where can I get brown paper bags, how many will I need etc. Thank heavens Frankie Vallie’s song “Oh what a night” referred to a happier event.
The following day I received some cards asking me to have some blood tests taken. They were attached to a plastic bag, which had a sticky bit on it. I looked at it and thought of the doctor’s advice about breathing into a brown paper bag. Without delay I stripped the cards from the plastic bag and placed a folded up paper bag in it, and stuck it on the mirror in the hallway. I don’t care that the first thing one sees as they walk in the house is a bag with ‘diagnostic specimen’ written in big black letters. Although it is a talking point.
Another day I began to stiffen up and decided to get my wheelchair for ‘just in case’. As it happened it was a good idea as the stiffness progressed to the point where I could not walk. After completing what I was doing in the kitchen, I decided to explore the ground floor to see exactly how I could get from one room to another in a wheelchair (I lead such an exciting life!).
On the 19th I was in a bit of a state — stiffness and spasms. I was on the computer and then found myself writing the following on a piece of paper (please bear with me as I can hardly read it as the writing is so spidery): ‘On computer. Then couldn’t walk. Swilled down a gabapentin with two vodkas — like I could give a sh*t what it may be doing to me. I can’t stand — never mind walk’.
Firstly, my apologies for the language, but despite the state I was in I still managed to get the grammar correct! (That’s what being married to a journalist does to you). I think I can say it has been the worst month ever.
July 2007
Well, thank goodness — this month has been a vast improvement after the events of June. I don’t have much to talk about. Blimey, that must be a first for me!
It was Eloise’s 18th birthday. She doesn’t live at home now, but I made her a cake, and we all shared a bottle of champagne while she opened her presents. Of course, it was party time in the evening, as she is now legally able to consume alcohol. Methinks she may have had a hangover the following morning.
Chris’s school put on a showcase, which was fab. So much better than the typical school play. We all go to school events, but let’s be honest, we only go to see our own kids — who (in our eyes) are the stars of the evening.
It is his GCSE year, and he spent a week at a riding school for his work experience. He wants to do equine studies at college when he leaves school.
We all went to one of my brother’s for his birthday bash. A lovely lazy BBQ afternoon, and a fairly rowdy evening. Fortunately, it was a sunny day. After all the flooding we have had this year it was nice to see the sun.
With regard to the SMS, it has not been too bad. I read somewhere that a neurologist had spoken about this condition and said: “SMS is rather unique among neurological diagnoses because of its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable”. How right he was. How can one be relatively OK one moment/hour/day, and then in the blink of an eye be in dire straits?
As closing point to this month, I must tell you about my new hobby, and how sad it is that I am doing it. I have bought a washing line, and I am now washing everything in sight, just so I can hang it out in the garden to dry. Of course if it is windy — which is the best type of weather for drying washing — I can’t stand to hang it out. To be honest, it is a sight to behold as I drag the wash basket in one hand, while holding on to my walker with the other. Once I get to the line the fun starts, as I have to hold on to my walker or the washing line as I peg out the clothes (it doesn’t take much to make me happy!).
August 2007
Like many people we had hoped for a cheap late deal holiday, and like many people were disappointed to find there were none available. I believe it was due to all the flooding we have had. Those affected must have booked early. How selfish of them to deprive us of an affordable holiday!
We were going with my brother Martin and his family. We all tried to find a holiday mainly via the net, and in the end I booked an apartment in Salou, Spain, through a travel agent. I felt so smug as I had never done it before. I think this is where ‘Pride commeth before a fall’ enters the equation.
I had absolutely everything ready and packed the night before. Up at 3am. Checked the cases again, checked I had all my medication again, checked the passports were in my bag — again. By which time I had made such a fuss that David and Chris were getting a bit fed-up. OK, time to go. “Just a minute, I need to check I have put my nail polish remover in the bag”. At this point steam was coming out of their ears, so I just said rather quietly: “ It’s OK, if I have left it at home I can get some when we get there”. 4.30am, and we were off.
Of course, we got lost getting to the airport. I don’t know what Martin thought was going on when we went around the roundabout three times before finally deciding which was the correct turn off.
The flight was fine. The car hire was fine. The apartment was a five out of 10. We spent the first day unpacking and checking out the local area. It was at this point I began to feel a bit disappointed. It was not as clean as we would have expected. On the second day the air-con packed up. We reported it, along with the electrical socket which was hanging off the wall — complete with bare wires. It was all fixed the same day, but the following day the air-con stopped working again. Despite asking, no-one came, and we spent the rest of the week sweltering in bed at night.
We found some good restaurants — so at least we didn’t starve. We were in a fish restaurant on the beach one night when there was an amazing thunderstorm. Those of us who were sitting outside were whisked inside. The only problem was that the roof was leaking. Fortunately, the customers helped out by putting champagne buckets under the falling water. We were packed together like sardines, so what a better opportunity for me to talk to people and hand out my SMS business cards? Obviously only to those were interested.
Opposite our apartment was an Irish bar. They had karaoki every night. We had all been in there, but Chris and I went every night. Neither of us could win the X-factor, but who cares? I sang everything from Dylan to the Commitments. Chris sang Nirvana songs, plus songs by artists I have never heard of. Our only problem was when a rather disgruntled David came in at 2.30am and dragged us back to the apartment. I am sure he would not have bothered if we had taken a key with us (whoops!).
We spent a few days visiting other areas, and a fab day in Barcelona. Our flight home meant an early start on Saturday morning. About 2am, Chris and I were joined in our usual haunt by the rest of the family. Apparently there had been a fire in the café, which was attached to the apartments. The smoke was flooding through the air-con system. Although we were offered alternative accommodation, it was of no use to us, as we only had a few hours before we were due to leave. When the acrid smoke had cleared, we were able to go back. There was no point in trying to get any sleep, so two cups of coffee later we left.
I say it each time we go abroad, but yet again, my SMS symptoms were not as bad as they are at home. I walked a lot, albeit pushing my wheelchair. The only real problem I had was one morning when my back was in spasm. It accelerated very quickly. Before I could do anything to help myself, I found I could not breathe. Fortunately, my handbag was close enough for me to grab, and get the paper bag, which I always keep in there. Both David and Martin were on hand to help. Not a pretty sight, almost ‘fighting’ to keep me upright, while I was suffering back spasms and unable to breathe. I still can’t understand why a paper bag helps when I can’t breathe in to it? If anyone can shed any light on that, I would very much like to know. Once I was able to breathe again, the first thing I wanted — needed — was the good old vodka. A few minuets later the spasms stopped.
September 2007
The first thing I did this month was to see my GP. I told him that, in the main, I can cope with the pain, but not the anxiety. He is referring me for cognitive therapy. The only problem I have with this, is that whoever I see will not be aware that anxiety is a part of SMS for me, and therefore may not be able to help. We will see.
My neurologist has asked if I would like to try Naboline. It is a cannabinoid. Of course I said: “Yes”. It is used for people with MS and is meant to help with the pain. I got the prescription, and took one before I went to bed that night. I slept like a log, which I do anyway, but it was difficult getting out of bed when the alarm went off. However, once up, I was pain free, spasm free and, more importantly, I felt as if I didn’t have a care in the world. In fact, I felt so laid back, if we had been burgled, I would probably have told them where everything worth stealing was kept, and invited them to join me in a cup of coffee (providing they made me one too).
I don’t remember a lot about the day, apart from sitting doing nothing. We were meant to be going to a dinner party that night. I waited until lunch time, and had to ‘phone to say there was no way I could do the deserts. To be honest, I couldn’t even remember what I was going to make. Anyway, to make this story a little shorter, all I can say is that the effects of 1mg of Naboline did not wear of until the early evening. So in effect I lost a day.
A few days later David was in London for two days. I had been so worried about how I would cope in the morning, I decided I would try the Naboline again. I took one before I went to bed, but unfortunately the following morning my back pain, spasms and anxiety were as bad, if not worse, than usual. I tried the paper bag, which helped a little with the anxiety, but I had to resort to the vodka.
Of course, Chris was at home, but if I had needed him I would have had to send an Exocet missile up to his room — even that may not have woken him up. Why are teenagers never tired at night, but can sleep until lunch time, and still complain when, for the millionth time, one has asked/told/threatened them to get up? Of course I was never like that when I was his age!
The rest of the day was pretty much the same as the last time I used the Naboline. Or, in other words, a complete waste of a day.
I spent a week in Brighton with my sister. I had taken my wheelchair, which posed a bit of a problem, as her house is not very disabled friendly, but other than that I managed well. Each night I would go to bed and give myself a mental tick to signify an SMS friendly day. We had lots of fun, as we share the same sense of humour. I would recount some of the stories, but it is difficult to relay them to people who don’t know me very well. The only thing I will say is that I hope the guy with the dreadlocks is OK now.
October 2007
One evening I went to a dinner party. Unfortunately, I didn’t count the carbohydrate content well enough and the next morning found my blood sugar was a staggering 27.5! I think I may have mentioned before that if it’s above 13, I become more rigid. However, apart from the rigidity and worse spasms than usual, the anxiety was worse too. My upper abdomen became rock solid and I had to resort to breathing into the paper bag. It helps — eventually! Not much more to write about this month, so I will leave it there.
November 2007
I have had some kind of chest infection since July. Despite different antibiotics, it has not cleared up. I have had a chest x-ray, which was OK, and on November 1st, I had to have a bronchoscopy (not a pleasant experience). To begin with, I got off on the wrong foot with my consultant.
I was supposed to be nil by mouth from midnight. He had previously agreed that my morning vodka would be OK. I had taken my insulin when I got up, and as usual did not eat breakfast. Normally, my BM would stay about the same throughout the morning, but not today. It kept dropping. I kept having a sip of Lucozade and doing BMs every half hour. When I told my consultant, he (in a pitch just one step down from yelling) said: “It’s taken me half an hour to get here, and now I am going to have to cancel”.
I, on the other hand stayed very calm and said it had also taken me half an hour. I also asked if what amounted to an eggcup of Lucozade would really make a difference, and what choice, under the circumstances did I have? I think he was a bit taken aback at my response. He did manage to get his own back though. Because of the SMS I was supposed to have an IV sedative before the procedure. I don’t think it was meant to be given and immediately begin the bronchoscopy.
As soon as he had finished, he told me all was well. However that’s not what my mind was saying, oh no, my mind thought: “Mmm, this is a good time for a panic attack”. I sat up and swung my legs off the bed. The nurses thought I was trying to get away. With a hoarse voice, I assured them I was not, but that I was beginning to have a panic attack and that I needed to sit on the edge of the bed.
There were no paper bags to be had, but one of the nurses held my hand and put her other hand on my upper abdomen. She told me to breathe slowly and gave me a lot of encouragement. Back in my room and that’s when my throat became paralysed. That’s when I realised why my consultant had been concerned earlier. If I had vomited it may have been the last thing I would ever have done.
We went out to eat one evening and I have to admit pasta is one of my favourite foods. So pasta is what I had. I so wish I hadn’t. About 2am I woke up sweating and feeling odd. I got up and did a BM, yet again I had not had the right amount of insulin for the meal. Cue a massive rise in my blood sugar levels, so I took some more insulin. Pasta, plus the sauce seems to be so difficult for me to work out. I went back to bed but could not settle.
I felt agitated and anxious. For the first time ever, I had to wake David up. By the time he had got round to my side of the bed I was gasping for breath. Another panic attack! I grabbed the paper bag, which I keep on the bed-side table. It was difficult to get it into position over my mouth and nose as I could not let go of David’s arm. When things settled down — I don’t know how long it took — I got back into bed, but felt to anxious about lying down.
I sat up and watched the TV. By 5.50am I was a world expert on current affairs as I had been watching the BBC world news. Why it didn’t occur to me to turn over, I don’t know. All I was thinking about was that in 10 minutes I could turn over and watch GMTV. That was the time I fell asleep, and at 7am the alarm went off! So I got up at the same time as David and Chris.
One of my PAs was here one day (I bet she wished she’d ‘phoned in sick). I think I was feeling a bit sorry for myself. The morning turmoil progressed, as did my state of mind. We were having a coffee, when all of a sudden I threw my mug and an ashtray across the room, smashing both items. I ‘ran’ up to bed, crying, and soon fell asleep.
I was awoken by a GP (my PA had ‘phoned him). I don’t really remember what I said, but he recommended I read a book called Mind over Mood. It is quite good, but I think it would have been more helpful for me if I had read it when the anxiety was at a much lower level than it is now. He is also going to send an urgent referral for me to be seen at the cognitive therapy centre.
I saw my diabetic consultant and was given the thumbs up from the results taken the last time I saw him. I received a letter later that week telling me I have a hospital appointment at the eye clinic as they are not happy with my last eye screening results.
I’ve also seen another neurologist about my anxiety. My appointment was 10am. I arrived a little early. At 10.45am I asked one of the nurses how much longer it would take. I explained that I could not sit for too long. However it was about 11.15am before I saw him. He was perplexed and wants me to have my thyroid function checked again. He is going to see if he can speed things along with regard to the anxiety problem.
When I left his room the ‘fun’ started. I managed to traverse the corridors to the exit without taking a wrong turn (a first for me). Once I got outside, that awful feeling started again, plus my back began to spasm. I sat in my wheelchair for a while, hoping things would settle down.
After a little while I decided I would try and make a break for it and head for the car. I had hardly gone any distance before I realised I could not make it on my own and found a guy who was also going to the car park. I asked if he would mind some company — he could walk and I would talk. By the time we got to my car, I knew I would not be able to get out of my chair, I was too stiff after all that sitting, plus my lower back was in spasm. The guy obviously saw the trouble I was in and somehow managed to get me and my chair into the car. I sat for a while, hoping things would settle down.
There was an elderly man nearby getting out of his car, so I asked him if he could find a porter or any of the staff to come over. About two minutes later the whole crash team arrived! From what they had been told, they thought I must have been having a heart attack. With all that help at hand, I felt a little easier (heaven knows why, as not one of them knew anything about SMS). I explained my predicament and all but one of the team left. The doctor suggested I return to the reception area, and a porter arrived to take me.
I tried to ring round for help, but everyone out. Apart, that is, from the one person who lives in the same village as the hospital — my step-mother. Unfortunately, I never thought to ring her… About half an hour later, after I had walked around the reception holding my chair, I felt considerably better and asked Andy (the porter) if he would take me back to the car. As it was all downhill to the car park, I didn’t have much option other than to be pushed most of the way. However, once I had reached my car I was able to get into it pretty much unaided. At last I felt able to drive home without being a risk to myself or other road users.
David had been in London for two days. When he came home and found out what had happened he was not a happy chappy. He had been ringing me — no answer. My sister had also ‘phoned and tried to get me on my mobile — no answer (that was because I had left it at home on the kitchen table, d’oh!). She was worried and texted David. After he tried to get in touch again, he eventually rang one our neighbours to enlist his help.
All he could report back was that there was no car outside. The door was locked and when he rang the bell the dog barked. It really is so nice to know people care enough to go to all that trouble if they think I may have a problem, but at the same time it can feel a bit claustrophobic when I have to tell David each time I am going out.
Anyway this month has been like a ‘Carry On’ film without the humour. Before I leave this month’s diary, I want to apologise. This diary seems to have become more dreary as time has passed. The other thing I want to say is “Don’t forget, this is my diary. If you are a sufferer, it does not mean you will follow in my footsteps”.
December 2007
Well, December cometh yet again. I don't like December because the winter officially starts. We suffer the totally disproportionate saga of 'getting ready for Christmas' (the list goes on, but I won't, or you will begin to think I am a miserable so and so, which I am not, unless it's this time of the year...). We spent Christmas Day at my brother Martin's house. There were 10 family members. All the guests
made the starters and desserts, which took a bit of the pressure off Sue (Martin's wife).
The highlight of the day was when we pulled the crackers. Jack - my nephew with autism - got a pair of nail clippers in his. Nobody knows why he is so fascinated with nail clippers, but they kept him happy for about an hour.
Last year I vowed to do something on New Year's Eve but alas, when it came to it, I could not be bothered. However, fate lent a hand in the form of my best friend and her husband. They arrived complete with about half a dozen musical instruments. We three got out our guitars (and the wine) and made it impossible for any of the neighbours who may have been hoping for an early night, to get one. We may have been in competition with Jools Holland, but I think we had just as much fun. For anyone reading this who does not live in the UK, Jools' music programme is the one to watch on New Year's Eve. Bye Bye 2007.
January 2008
Hello 2008. The first bit of news this month is that Chris has had his hair cut. It is now above his shoulder blades and has low lights in it. The only reason for telling you this is because it has not been cut for over a year. I have never pushed him to have it cut - possibly because of my fond memories of the sixties when all the guys
had long hair...
OK, I'm back from my daydream of flower power, free radio, concerts in the park, all night parties (actually I only recall going to one, and the only place I could find to sleep was in the bath). The only things I missed out on were sex and drugs, but I got more than my fair share of rock and roll (as I write I am listening to the Beatles).
I have sometimes wondered if I would like to be born in 100 years from now, only because a cure for SMS will have been found. However, if that were the case I would not have lived through the 1960s.
Enough of the ramblings of my memories of the 60s and I will get back to the present (if I really have to). The only thing of note this month is the holiday to Malta with eight family members. Apart from David we were all Ainleys (my maiden name). After thirty years one would think my other half would understand the 'in' jokes that begin at breakfast and end at bed time. It generally starts with one word,
and over the course of the day we find link words which seem to get funnier as the day wears on. Perhaps it's because David's body contains no alcohol, or maybe he lives in a parallel universe. Who knows? Anyway at least he laughs with us.
Yet again I did a fair bit of walking. There was only one SMS incident. We had gone to bed and my blood sugar was a bit high. I woke up about 4am feeling quite agitated and anxious. I tried to get up to go to the bathroom only to find I couldn't, as I was so stiff. I had to wake David up. It took two difficult and painful hours to go
to the loo and get back into bed. I didn't have any vodka to fall back on and had to resort to breathing into a paper bag as I was feeling a panic attack coming on. I skipped breakfast as I was still unsure of myself. Would I be able to hold a cup without spilling it? Would my food be flung off the plate by my shaky hands? After about an hour I had got myself together well enough to go out, and everyone
took turns pushing me.
Nobody had had much sleep that night - but not for the same reasons as David and I. If they spent the night clubbing, drinking or whatever they did, then they were getting no sympathy from me. However, my heart went out to David. I do sometimes wonder why he stays with me. Let me think. Oh yes, I remember now - I cook (most
nights), don't complain when he plays golf, and listen with bated breath when he is talking about his car. (Just going back to the golf, one wonders how someone can play when suffering with five slipped discs. Perhaps it's because he has analgesic infusions every six weeks).
February 2008
At last my appointment has come through for help with the anxiety. Six sessions of cognitive therapy. I have had two this month. I call it ‘my daft class’. The guy I see has a sense of humour — which is great for me, as I find it difficult to be ‘sensible’. I came out of both sessions wondering if he was analysing each and everything I said. I will keep you updated on how it goes.
I went to see my old Theatre group perform ‘Abigail’s party’. It was lovely seeing some of the old faces again. I would so love to join them again, but if I put my sensible hat on, I know it is not going to happen. While watching the performance, I began to reminisce. I looked at the set, and remembered how easily I used to climb ladders and paint the very top bits. I only performed two or three times during my time with the group. I enjoyed being the prompt. I would love to re-join Junior Chamber (except I am obviously too old now).
I had some great times. I went to France and Holland, staying with JC members. The most scary part was giving a talk about Beverley to a hall full of French JC members. Trying my best to give the talk in French. I think after introducing myself and telling them where I was from, it kind of went downhill from there and I had to revert back to English. Anyway. enough reminiscing.
When I last saw Dr J, a neurologist who specialises in movement disorders, I kept the appointment with him, hoping he would be able to help with the anxiety problems (see last November). He suggested I had a honeymoon period from diazepam, rather than upping the dose, which I thought would be the advice. I began at the beginning of the month by cutting down by 2½ mg. I have had no ill effects. Doing the maths, I expect to be diazepam free by September. I believe the reasoning behind this is that by next January, my body will see diazepam as a new drug, and respond well.
March 2008
There seems to be so much to write about this month, I don’t know where to begin. Let me look at my calendar…I decreased the diazepam by 2 1/2mg again, but by mid-month my anxiety levels had got so much worse, I went straight back to my original dose.
I had another meeting with Paul at my ‘daft class’. He showed me how to use the ‘Emotional freedom technique’ (EFT). In theory, one is meant to tap the meridian points of the body (the same as are used in acupuncture) while using a phrase applicable to oneself. The web address for this is www.emofree.com There are lots of pages which are not worth printing out, but I really do believe it is worth a look (I am writing this mid-April, and know how it has helped me).
I look back at how much money I (OK, David…) has spent on alternative therapies in the past, none of which really helped. Other members of the group have told me about therapies which have helped them, but I guess it’s horses for courses. Anyway. I am not sure if it’s the therapy which is helping, or the fact that in a certain light Paul has a look of Johnny Depp!
I have only had one really bad day this month. Of course it had to be a day when David was meant to be going to London. I like to be up before he leaves so he knows I am not having a hypo, although at times it must be difficult to know if it’s a hypo, or just the usual daft stiff Liz.
However, my back spasms would not stop. David stayed at home and kept telling me he could catch a later train. It was only when I heard him ‘phone to say he would not be attending the meeting that my spasms began to ease. Now I am no Einstein, but I believe without a shadow of a doubt that the mind, to an extent, is able to control some of the symptoms.
When I spoke earlier about the EFT, I have to admit I only use one aspect of it, called the ‘sore spot’. The way to find your sore spot is if you put a finger under your chin, slide it down to find the edge of the collar bone, and go down to the fourth rib. You will find it about half way between your nipple and your mid-line. I massage it at the same time as telling myself the anxiety will ease. Obviously I don’t say it out loud, well not if there are any men in white coats hanging around. I suppose the technique works to get the subconscious involved.
To be honest, if I were reading this, I would question the writer’s sanity. However all I can say is it seems to help me. I am a bit concerned, though, at what I have just written, as I don’t want anyone to think the answer is simply in alternative therapies. Medication is still vital.
I went to Bruges with my brother Steve. North Sea Ferries — very handy, as the port is only about 10 miles away. The last time David and I went on the ferry I was sea sick before we got out of the Humber, so this time I made sure I took a travel sick tablet. Steve and I were fortunate enough to have the best cabin, location wise. Once we got our bags into the cabin, we bade a brief farewell to Hull, had dinner and then went to watch the evening entertainment.
I wanted something from the cabin and rushed — well slowly rushed — along. I had only done about 20 revolutions in my wheelchair when an arm shot out in front of me. The woman to whom the arm belonged insisted she took me to my cabin. After a few minutes politely telling her I could manage, I had to give in and let her push me. A few moments later she started asking (in a slightly panicky voice): “Where is the toilet, will someone tell me where the toilet is?” Once she had located it, she spun me around. I asked what she was doing: “Taking you to the toilet Dear”. (I hate being called Dear) “But I don’t want the loo, I want something from my cabin,” I retorted. After having told her where the cabin was, I discovered her sense of direction was worse than mine.
When we got there she wanted to take my key and unlock the door. I told her I was quite capable of doing it myself, and she reluctantly gave in. I quickly got what I wanted, and got back into my chair. I then had to give her instructions on the way back from whence we came. Her husband (a GP on sick leave) joined us on the 50 yard journey. As we approached Steve he thought I had run in to difficulties as I was being pushed, and he invited them both to join us. It soon became apparent they were pretty drunk. They both had problems too, but on this occasion I felt rather too selfish to stay and listen. After all I had spent days stressing about this short break, and I wanted to enjoy it. I made my excuses and went to circulate. Steve went to the casino and won £80. I, on the other hand found Bob from New Zealand. I wanted to talk about cricket and rugby.
Unfortunately he had other things on his mind — probably drink induced. I left him after a short while with the stern warning that he had better behave himself or I would not speak to him on the return journey.
Sleep was calling so I found Steve and we turned in for the night (what was left of it). I insisted he slept on the top bunk, and he promised not to snore. I lay on my bunk and rubbed my ‘sore spot’, telling myself “I do not want to suffer any anxiety when I wake up”. Then, in for a penny in for a pound, I also said to myself “I don’t want back spasms, and if it’s not too much to ask, I don’t want back pain either”. It worked. I woke up to find all three commands had been obeyed (after all these years, you will now believe I really am crazy, but I don’t care, it’s working. How it’s working I am not sure. I only know it is).
We travelled by coach to Bruges. I don’t think I have ever seen so many people with hangovers. I felt great, as I had only had one glass of wine, and more importantly I had no anxiety, no spasms and only minor back pain. We spent the day café hopping and went on a boat trip. We met Gladys and Natalie (mum and daughter). Thank heavens for sane and sober faces. Natalie had been there before and we joined them for brunch. We arranged to meet in Bruges town centre square at 3pm. The four of us did our shopping and headed of back to the coach. Gladys (whose age I will not reveal) was feeling a bit tired, so I asked if she would like me to push her in my wheelchair. – I find it easier to push if there is some weight in it. I had not realised how far the coach station was, and by the time we arrived I felt shattered. So I had a double vodka and two cups of coffee before getting on the coach back to the ferry.
I was amazed, and to be honest rather ashamed, to find most of the passengers had spent the day drinking alcohol. Anyway, everyone on the coach seemed to have found a new ‘best friend’ on the journey back to the ferry. For me it was Sean, a 26-year-old. When we got back to the ferry, Sean and I decided to use the escalator. Half way up, one of the wheelchair’s footplates fell off. We both laughed. I put it back on again. Neither of us realised there was another escalator to traverse before we got on board. So yet again it was a case of 1,2,3, go! We got to the top, after the same footplate fell off yet again, and were both in stitches. I think that was the first of many times that evening he asked me to marry him (alcohol induced of course).
After Steve and I had eaten, the fun began again. Sean and Bob were both given a red card, due to the fact they had both consumed too much alcohol again. I met up with a couple of German women, who were coming to the UK to improve their English (good luck to them as their English is probably better than most of the people they would meet).
Off on my travels again, and I met a couple from Nottingham. They were both dumb. (I don’t know, or care what the PC description is of people who can’t speak) .We had a fab time. I knew quite a lot of the alphabet, but not how to make a sentence. So I spent time learning. I didn’t ask their names — but as they were from Nottingham I called them Robin and Marion. For anyone reading this who does not have a clue as to what I am talking about, look up Robin Hood either in a book or on the computer.
I had no idea of the time, but my body was saying “Sleep”, so I found Steve in the casino, where he had won again (lucky so and so). As we walked to our cabin we saw a guy, nicely dressed and well spoken. We talked for a while, but then when he asked me what I thought about holiday romances, I told him we would be back in Hull in three hours, so how could we possibly have a holiday romance?
Both Steve and I realised it was time to go. There were two problems. Firstly he would not give up, and secondly, he was in the next cabin to us. I am not prepared to write about what else was said, but I ended up saying a rather shaky pleasant “Goodnight” and closed and locked the door very quickly. Phew, I was so pleased I had my brother with me.
I massaged my ‘sore spot’ again, giving the same instructions as the nigh before, and yet again it worked. In a matter of a few hours we were in line to disembark. I was standing alongside the other wheelchair users, waiting to disembark, when Steve approached with a look on his face which I knew had a story behind it. He told me he had overheard a woman complaining about me. The inference was that I had been feigning a disability, as she had seen me pushing, rather than sitting, in my wheelchair. I had been laughing (how dare I?) and socialising (the shame of it!). He had waited until she had finished, and then told her in no uncertain terms that she knew nothing about me, or my disability and had no right to say what she was saying.
The reality of SMS is we have good days as well as bad ones. It did make me wonder though how I would have felt had I been her. I know David feels awkward when we are in an airport or anywhere where the disabled have any kind of priority. He feels I should be sitting — a sort off ‘proof’ that I am disabled. I expect by now you all know I will not be told what to do. Apart from anything else, if I am able to walk, my wheelchair is a very good place to keep bags etc (saves carrying them!). Anyway, why should I sit if I can walk? As long as I can hang on to the chair, I really don’t care what others think. If they want to know, they can ask.
We had a committee meeting this month and have a new member. He is an SMS sufferer. The reason for telling you about him is the medication he is taking. It is called Sativex, a cannibinoid. When he and his wife arrived, he was overdue for his spray of Sativex, and showed me how difficult it was for him to walk. About five minutes after he used the spray, he was able to walk unaided around my house — a place he had never been before. He used to smoke cannabis for pain relief (as many sufferers do). The difference was amazing. I have tried smoking it in the past, but it does not seem to suit me. I have never ‘chilled’ or had any beneficial effects. I believe it is legal in Canada, but here in the UK it is unlicensed. However, it is obtainable in the UK through a GP or consultant. If you want to know more about it, have a look at the Sativex site on the internet.
April 2008
I really must pause for breath after last month. OK, breath taken. David’s brother has stayed with us for a few days, twice this month. The downside of this is that the guys dominate the TV. Sport, sport and more sport!
During his second stay I went to visit one of the group members who lives in Kent. It involved three trains and a London bus to get there. Wow! I did it, and thoughly enjoyed the experience. In fact, I was so excited knowing I had planned and arranged the whole journey myself (in a normal life, and at my age, that should not be anything to brag about, but as an SMS sufferer, it is).
Naturally, the journey was not uneventful (if you don’t want all the details, then skip forward to the end of the month). If you are reading this, then don’t blame me — I gave you the chance to move to a later part of the month!
Firstly, thanks to my brother Martin for taking me to the station and finding a shop (in the pouring rain) to get me a paper. I got the train from Beverley and met a woman who got on a couple of stops down. She worked in the pathology labs at my most hated hospital.
Strangely, she had heard of SMS, so we had something to talk about. My first change was at Doncaster. I saw a porter, and asked where I could go for a cigarette. He obliged, and off I went. I tried to look inconspicuous, which is not an easy task with a wheelchair. Two minutes into the cigarette and a warning about smoking blasted out of a loudspeaker. For an SMS-er, I moved quite quickly back to the station. The porter looked surprised at my sooner than expected return. I told him I had been spotted by the cctv. To which he replied — while trying not to laugh — “There is no cctv. That message goes out every 10 minutes”.
My next train soon arrived. I parked my chair, with my bag on it, but could not find a seat close enough to keep an eye on them. The path lab woman soon sorted out the problem for me — by asking someone to move. The journey to Kings Cross was enjoyable. I chatted to an elderly woman, travelling alone — very brave to go from Scotland to London.
Each time I wanted something from my bag, I chatted with Margaret, a woman who was keeping an eye on it. Not many people are brave enough to actually ask what my problem is, but she did. Naturally I was more than happy to tell her (more awareness raising). It turned out that she is a composer and musician. Furthermore, she told me she would send the charity a cheque. In no time at all we were at Kings Cross. Every capital city has a reputation for muggings and the like. In fact, a friend had told me I should take ‘mugging money’ with me. What! I am Liz, and from Yorkshire. They would have to kill me before I would give in to that kind of thing.
As it happened, my journey across three main roads to the number 73 bus, which would take me to Victoria station, could not have been easier. The ‘path lab woman’ escorted me and it seemed to me that everyone had a smile on their face. OK, perhaps I am getting a bit poetical now, but you have to put yourself in my shoes — 56 (just), disabled, alone, and in unfamiliar surroundings, and a sufferer of SMS. How am I managing this, when there times at home when apart from other things, I have to crawl to get from one room to another?
Anyway, back to the story. I got to the bus and asked the driver how much the fare was. “No problem” he said “Just get on”. After a couple of minutes he asked if I would move further down, but I couldn’t as there were rails in the way. So I had to get off at the next stop, and get back on at the entrance in the middle of the bus. It was quite a long journey, but I got to see lots of familiar sights. When I got off I made a point of thanking the driver for not charging me, only to find if one is disabled, the ride is free.
Having got to Victoria station, I didn’t have a clue which platform I wanted. Perhaps I should have looked at my ticket — but why bother with such minor details when there is always a man to ask?. The last part of the journey beckoned and I will have survived what could have been an horrendous experience. With no incidents to record, the train pulled in to the station in Whitstable and Jane and her husband Tom were there to meet me. Did it!
I wasn’t as nervous as I might have been, because Jane is an SMS sufferer, so I knew they would understand if I was not the ‘normal’ kind of guest one would have staying for a few days. They live in a town house (three storeys) and guess which floor I was sleeping on? Correct, the top one. Actually it was fab. I had a double bed all to myself, and my own bathroom. What more could one want? And Tom is a super cook, which meant we ate well.
The following day Tom was at work, and Jane and I decided to go into town. Jane ordered a taxi, and off we went. I barely had time to get my seatbelt on before we were there. I don’t know what came over me, but when the driver got my wheelchair out, I told him we would probably be using his services quite a bit over the next few days. I showed him our business card, and said: “If you will give a donation to our charity, I promise I will never try to kiss you”. I have never seen a man put a hand in his pocket, and pull out £10 so quickly. Nice for the charity, but a bit of an insult to me.
So, Jane with her three-wheeled walker and me pushing a wheelchair, entered the town centre. Having got £10, I was in the mood for more financial cheek. I saw a man coming out of a public loo while fastening up the top two buttons of his jeans. “Excuse Me,” I said, “but you are supposed to do that before you come outside. It’s a public offence.” Then, showing him the SMS business card, I told him the matter would go no further if he would be willing to make a contribution to the charity. I couldn’t believe yet another man was so quick to put his hand in his pocket! The most amusing bit of this story was that as he turned to walk away, I saw his wife, who must have overheard, laughing her socks off at him.
After lunch, Jane showed me a little more of the town. We walked down a street where someone famous (I can’t remember who) had lived. A little further on there were some builders working. They looked as if they needed a little respite, so kind soul that I am, I stopped and had a chat, during which time I made a deal with them. I would finish up sweeping the rubbish — about one shovel full — if they made a donation. All four of them coughed up the change they had in their pockets. Result! (I’m getting the hang of this now).
Poor Jane had had enough walking, so we decided the best way back to her home was along the promenade. Along the way we saw two guys walking towards us, each with a pint in hand. I whispered to Jane “More money approaching”. “Oh! No, what are you going to do this time?” she replied. “I don’t know yet, wait until they get a bit closer”. As soon as they were within speaking distance, I began with: “Isn’t it a beautiful day?”. The conversation carried on, and I asked them if they realised it was an offence to drink alcohol on the promenade (the way a lie just pops out of my mouth makes me think I missed my vocation, I should have been a politician). One of them was quite upset, as he had just been banned because of drink driving. A compromise was made — they donated to the charity and I promised not to utter a word to anyone official.
When we got home, we were both exhausted. It had been a long time since Jane had walked such a long way. We both knew neither of us could have walked so far had we been alone. Why is that, apart from the fact that it is something an SMS sufferer feels/fears? As weird as it seems, having someone nearby, even another sufferer — who would not be able to help if one encountered difficulties, still fulfils the same psychological crutch one needs.
The following day I felt so guilty as Jane felt she needed to stay in bed. I had worn her out the day before. However, thanks to my ‘sore spot’ I was able to walk into town with Tom. We stopped off at the local yacht club for a liquid lunch. Tom was chatting to friends, and I went outside. I saw four men casually leaning against a wall, and of course I saw them as potential victims. No, no, I mean kind-hearted givers. I approached, pushing my wheelchair, and with business card in hand, I told them I felt it was my duty to fine them. They had bewildered looks on their faces as they asked “Why?” I told them it was because they were wearing shorts (that’s all I could think off at the time). When they questioned my reasoning, I simply told them, that personally I didn’t think it was warm enough. Anyway, they all emptied their pockets, as I think they admired my cheek. I did feel a bit guilty as they were RNLI men.
I did promise to put everyone’s name who had donated that weekend on here, so here goes — Tony, Lou, Grant, Roy, John, Russell, Nigel, Bob, Squitters, Mike, Mike, John, Tony, the taxi driver, the guys who were preparing for a wedding at the club, the builders at ‘Windy’s’ shop, and everyone at the Coach and Horses pub. If I have missed anyone out, then I’m sorry.
The rest of the time spent with Jane and Tom was, SMS-wise (thankfully), uneventful. I thoroughly enjoyed my time there. The journey back was fun, too. I got off the train at Victoria station and took the red bus to Kings Cross with such confidence one would have thought I did it every day. A woman got on the bus a few stops later. She had a rucksack with her, and she was kneeling down next to me. I had visions of her being a suicide bomber. So I devised a cunning plan — at the next stop I was going to kick her rucksack off the bus, and then her, or the other way round (my mind goes into overdrive sometimes).
Anyway, she got off at the next stop. She was just fare dodging. I arrived at Kings Cross with only minutes to spare. As I walked down the platform, I heard my name called. I panicked, thinking something must have happened at home, but no, it was a porter (booked when I bought the tickets) there to help me onto the train. From there on it was plain sailing all the way back. David met me at Beverley station. By 1am I was tucked up in my own bed. I had used my sore spot and positive thinking, which I feel is why I managed to be ‘normal-ish’.
May 2008
Well, I don’t seem to be any the worse for all I have been up to recently. In fact, it has spurred me on to get a disabled person’s rail card. Oh, where, oh where can I go next? Any suggestions would be most welcome (I don’t eat much and am easily pleased!). My feet are itching, as are the wheels on my chair.
I have had my last appointment with Paul. He has helped me in a way nobody else has been able. So I made him a chocolate cake to say “Thank you” (I gave it to him after the last session, just in case there were any adverse effects, which may have meant the following sessions would have to be cancelled). As his demise has not appeared in the local paper, I am assuming I have not poisoned him.
As I look through my calendar, it seems almost everything is an appointment to do with doctors, either for David or myself. I have had a small operation on my left thumb. It was done under a local anaesthetic, which meant I could watch the proceedings. I can hear the gasps, but you must know by now that I don’t like to miss anything. In fact it went so well, I didn’t need to attend the follow-up appointment, as I had taken the sutures out myself, and all was well (remember, I used to be a nurse). Anyway I don’t think there is anything of significance to tell you about, so, until next month, bye.
June 2008
I’ve had my diabetic check-up this month, and all seems well. I had an appointment with my consultant who specialises in movement disorders, but I didn’t attend as I was pretty much OK.
David, Chris and I went to Trent Bridge to watch the test mach between England and New Zealand. Everything went wrong. We had to park about a mile away, quite a walk with the wheelchair. We arrived at 11am, and unfortunately we were sitting with the England supporters - we are NZ supporters. There was only one hour’s play before we were slaughtered. On the way out I asked for a programme, but the guy wanted the full price for it. I could say nothing to make him change his mind. I needed a cunning plan! (the disabled card and a sorrowful face didn’t work).
As I was trying to think of one, I saw two policemen. I approached them and a plan was indeed truly hatched. They went over to the guy, and with serious faces they told him he was under arrest. I’m not quite sure what reason was given, but somehow I ended up with a free programme, by which time the guy in question, and the policemen, all had smiles on their faces. David and Chris knew I was up to something and sloped off, out of sight. They have suffered my moments of, well I suppose they would call it embarrassment. Anyway, programme in hand we went to meet friends for a picnic in the local university gardens.
I think this next bit is quite interesting. As you may know, I have pretty much overcome my fear of crossing roads (one of the main fears for many SMS sufferers). Anyway, we had a long walk back to the car and had to cross a main road — and we were almost knocked down by a speeding motorist! Yet I was the only one who stayed calm. Good, eh?
Chris has finished his GCSEs and left school. He went to his prom night dressed in a tux. He looked fab. As David took some photos of him, I had a lump in my throat. How can my little Snuggle Bunny be grown up — it was only yesterday he would fall asleep in my arms and I would carry him to bed (I had better finish there, as he is sitting next to me on the other computer…).
July 2008
I am writing this in September, and with my memory — or lack of it — I have to rely on my calendar to get my facts in order chronologically. Hopefully. So here goes: Having bought a disabled person’s rail card I felt I needed to get value for money and visited my sister Claire in Brighton.
I am not going to reveal the antics I got up to on the way — I could tell you, and change the names of the people involved, but it’s going to remain my little secret... Not that this has anything to do with what I have just written, but I want to say a big thank you to all the rail staff who helped me throughout my journey, especially Brian O’Brian at Doncaster and the member of staff at St Pancras (whose name I have forgotten).
Anyway, as usual, I had a fab time. I only had one fairly bad spasm attack and thankfully Claire was on hand to help. She always stays very calm. There is nothing worse than someone flapping and making a fuss as it just makes the situation worse. Claire and I visited a National Trust place called Wakehurst. Claire has what we will refer to as an “Ainley” (if you have forgotten, that is my maiden name) trait, aka a weird sense of humour.
At one point we found a large tree stump onto which I managed to climb for a proposed ‘photo shoot. I sat rather demurely for the first shot and posed as “The Thinker” for the next. Then I tried to stand up (gulp), still on the tree stump, would you believe. Claire took pictures of my efforts to stand and, somehow, I managed it! Trying to get back to a sitting position, which would then enable me to get back to terra firma proved a somewhat more difficult task. My (from now on un-beloved sister) kept snapping away despite my obvious discomfort, while saying “Go on Liz, you can do it.”
By the time I got down I was sweating with fear. As if that wasn’t enough, she pushed me in my wheelchair down a path which, for an SMS sufferer, seemed to be not much slower than the speed of light. So I asked myself: “After all she’s put me through, why oh why did I pay for the afternoon tea and buy her the chilli-pepper plant she had her eye on?” Don’t worry, she got her come-uppence! I’ll tell you about it in August…
David, Chris and I went to my brother Martin’s for a BBQ and to look at the local annual open gardens. I popped next door to take their neighbour, Sid, some chocolate cake. He is about 180 years old and disabled, but as bright as a button. When he told me he would like to see the gardens, which idiot told him she would take him? With help he managed to get into in my wheelchair and off we went.
On those occasions when I can walk with my wheelchair, it’s easier if there is some weight in it, and on this occasion there certainly was. I think I should get an award for pushing Sid — it felt like we’d gone up, over and down Mount Everest and through the rain forests of Brazil. OK, swap Everest for bumpy paths and kerbs, but believe me it felt as if I had been on an arduous expedition. You will be pleased to know Sid survived. However, a word of warning — if you attempt to do something similar, don’t do it while wearing new shoes! My feet were killing me after our little jaunt.
Sometime during the month, I needed some shopping from the local supermarket. Although I wasn’t feeling at my best, I was determined to go alone. Too stiff to take my walker, I opted for the wheelchair. I was struggling from the start, but Chris had seen me from the study window and decided to go with me. With the shopping completed, I faced the pain and fear of getting back and into the car. I would not have managed without Chris’ help. Driving home was no problem, but of course getting out of the car and into the house was a continuum of the earlier events. Well, at least I tried.
David and Chris went to the Motor Show in London and then on to see Deep Purple, a rock band once acclaimed as the loudest ever. They arrived home about 4am in the morning. Before they went I had everything I could think of to hand — life-line buzzer, walker, ‘phone etc, thinking I would spend the evening watching TV programmes of my choice. However, the best laid plans and all that. I had a call from a member of the group which lasted for three hours! The rest of the evening was spent worrying if David and Chris were OK. Why oh why does anxiety always have the upper hand in my life? When they arrived home I pretended to be asleep on the sofa. How they could not hear my heart thumping with relief that they had got back safely, I don’t know.
August 2008
I got a call from my sister Claire to tell me she had picked one of the peppers I got her while visiting her last month. Both she and her children had taken a bite, only to find their tongues were on fire. They drank milk, ate yoghurt, anything to cool their mouths. No doubt I was called every name under the sun. Not my fault, but someone always has to cop the flak…
After I almost wet myself laughing, I told her it was pay-back for the way she had treated me (it was a pity the kids had to suffer though). I did panic a bit when she told me her eight-year-old son was going to the loo. I yelled down the ‘phone “Make sure he washes his hands first”.
Chris went to Derbyshire with a friend to a four day rock festival called Bloodstock. David paid for it to say well done for getting good exam results, enabling him to start college. I got a call from him on the day he was due home saying: ”Mum, we’ve missed the train”. Fortunately, I had a friend with me. She, unlike me, is quite unflappable and after numerous ‘phone calls, and use of my plastic, we managed to get Chris and his friend home safely.
When I thought about it afterwards, I was happy it was the only mishap he encountered over the five days. At 16, I would never have had the confidence to be away from home (I was a bit of a drip even in the 60s). In fact. I thought I was brave going to an all night party.
David has been for his six-weekly analgesia infusion for his disc problems. It always makes him feel a bit rough for about 48 hours, but then the effects begin to kick in. In a ‘normal’ house people are rushing around, getting ready for the day ahead, but our day usually starts with “Did you sleep OK?” or “How are you feeling today.”
Usually I can’t get my head in a comfortable position. Although David falls asleep as soon as his head hits the pillow, he often has disturbed nights. When he talks in his sleep, he is always so angry. I know I have said it before, but I do believe it is often worse for the carer. Perhaps because they feel they should be able to take away the pain and everything that goes with it. Sadly, they can’t. I don’t know how he copes with a stressful job and all that goes on at home.
David took me to the eye clinic where I was told I have a cataract starting on my left eye. I was given the option of laser treatment but declined as it is not giving me any problems at the moment.
We have had our monthly dinner party. I made Hungarian goulash. The evening was, as usual, lots of fun. A dimension we have introduced to these occasions is someone has to reveal an embarrassing story. I’m not telling you any of my tales, but as you can probably guess, there are plenty of them. And as David would be quick to point out, they can go on forever... I’ve never let brevity get in the way of my tale telling, even if the audience has long since fallen asleep.
September 2008
Before I start this month’s account of ups, downs and in-between bits, I would like to say hi to all my SMS email friends in Australia and the USA. Buenos dias to those in Spain, and guten tag to everyone in Germany. All I need now is a contact with someone in Italy, as I love the country and its people.
What a crazy month this has been. I will go through it chronologically. Chris and I went to Brighton again. My disabled person’s rail pass only lasts until next May, so my intention is to use it up and wear it out — health permitting, of course.
Having left on the Thursday, David called me the following day to tell me that thanks to storm damage part of the bedroom ceiling had collapsed. Although some people say we all have a guardian angel, I believe mine took an early retirement when I fell foul of SMS. However, it must have come back for one last look on this occasion as David told me three bricks and a breeze-block fell on my pillow! Life can be fun when one manages to escape just in the nick of time.
Anyway, back to Brighton. It rained. Chris used my plastic — obviously with my consent — but I didn’t realise he ‘needed’ so many clothes. Oh well!
Thanks to drinking too much vodka, I managed to upset Claire. Thankfully, we are close enough to have talked it through and make up.
When I first discovered the help alcohol gave me in relaxing the muscle spasms, it was wonderful. Mornings can be pretty rough when thanks to lower back spasms one is clinging on to the kitchen table for grim death, with feet around the chair legs so as not to be thrown off the chair.
The problems started when I began to drink it when my back was painful, not just in spasm. Even when I realised it only helped with the spasms, I still carried on. Perhaps my thinking was that it would ‘work’ this time, and so the morning routine consisted of getting up, checking BM, counting out the day’s medication, take insulin, take tablets, make and a cup of tea and then have a vodka. The weird thing is that I don’t need much for it to help me. Although I try to say “Don’t do it Liz, your back hurts, but it’s not in spasm this morning”, I still do.
I also use alcohol when I am anxious. ‘Normal’ people would look forward to a night out, a holiday, an enjoyable experience, but I just get so anxious. It puzzles me that as a former nurse, and someone with a modicum of intelligence I choose to ignore the dangers. I fear there may come a time when it rules me. If you are religious, then please pray for me that it never happens. Perhaps it’s my way of shutting out life’s problems. Believe it or not, I only drink Hi juice orange in the evening, unless I am at a social event. So my message to other sufferers is, by all means use alcohol, but only when you need it! Of course the main problem is obvious, if I have more than one in the morning, it means I can’t drive.
After writing about alcohol, the next thing to tell you about will seem a bit bizarre. As a diabetic, my driving licence needs renewing every three years. The DVLA this time decided I also had to sit an assesment. Not a re-test, just an assessment.
Definitely no alcohol that morning, I told myself. Inevitably, it was a day when my back decided to have double the fun, spasm activity-wise. I’m not a pretty sight at the best of times, but watching this disabled dwarf, who to all intents and purposes looks as if she has St Vitus’ dance, coupled with a look of pure fear on her face, would be enough to put a saint off his breakfast.
Thankfully, David ranks several levels above a saint and as the assessment wasn’t until 2pm, he insisted I have a drink (I didn’t need much persuading). One shot and my back began to settle down. David then drove me to Leeds for the afore mentioned assessment. It began with a spatial awareness test (quite good fun actually) which I apparently passed with no problems.
When I was asked which of their cars I would like to use for the test, I asked for an automatic in British racing green. As they didn’t have one, I told them they could choose one for me. Aren’t I considerate?
When asked what car I normally drive, I told them “a black one or a blue one” to which they replied: “But what type?” I said: “A Subaru.” They said: “Which model?” I replied: “Well, it depends which colour car I am using.” I wasn’t trying to be awkward but I think that was the point where they gave up asking me questions about cars and led me to the one I would be using. It turned out to be a semi-automatic Vauxhall (apparently).
So, seat belt on, mirrors adjusted, engine on and off we went. We drove around the grounds first and at one point my instructor told me I was the first person not to have driven over the curb on a particular corner (I’m only telling you that to show off). I had to spoil it, though… about 10 minutes later I remarked that the surroundings looked familiar. “Yes, that’s because you have just driven around it” was the reply. The only thing I could think to say was: “Well, I am a woman and we don’t have a sense of direction.” Clever, eh? I think that was just before I went over the curb I’d missed earlier… At this point I will bore you no longer, except to say I went up hill, down dale, around roundabouts etc, etc and almost sent the instructor through the windscreen when doing my emergency stop. After 90 minutes the ordeal (for both of us) was over. I passed, by the way. Good, eh?
The day of my driving assessment was Chris’ first day of further education. He is doing equine studies at Bishop Burton College near Beverley. For those in the know, it’s quite famous. David and I forewent a visit to Ikea on our way home so we would be home before Chris to find out how things had gone. It turned out that the first day is all form filling etc, so not very exciting.
Chris set off for college on Day Two, still full of enthusiasm (which, for anyone who’s had teenage sons will know, is rather unusual). He was probably more excited by the fact we had tickets to see the band Nickleback at Sheffield Arena that evening. But when he got home, I only had to look at his right hand to know he had broken his wrist (this is the fourth time it has happened).
As any good mother would do, I strapped it up, gave him analgesia and … off we went to Sheffield! A fab night was had by all, but Chris was in pain by the time the evening drew to a close so I was dropped off home and David took Chris to A&E where, several hours later, they confirmed my worst fears. Home by 4am and back at hospital by 11am to have a pot put on. He doesn’t get it off until October 20th, which means no riding or being close to a horse. As it was a horse that broke his wrist, that’s fair enough, but Chris was — and has been — hugely downhearted by not being able to take part in riding and fears he will get left behind. His tutors have been good, though, and encouraged him to take this set back in his stride. Hopefully he will.
October 2008
I have, as usual, been up to my eyes with group and charity work, and am writing this mid-November. Well, at least the builders have been to try and rectify the gaping hole in the bedroom ceiling. Fab, well no, not quite. New flashing and other things that builders do to fix a hole in the roof (?). The ceiling was renewed, and arrangements were made for them to come on the 16th to reconnect the electrics and decorate. Why, oh! why do I always believe things will go according to plan, when from past experience I know they don’t?
I was on desserts duty for our diner party this month (we have changed the name to Come Dine With Me). I made lemon tart and a chocolate truffle torte. Yummy — for those who are not diabetic. I coped quite well during the day as I paced myself. Had a shower in the afternoon and got out the clothes I was going to wear etc. So why, as the time to leave approached, did my anxiety levels increase? On such occasions it feels as though I am suffering from equal quantities of OCD and bi-polar.
Once we arrived, I began to calm down and the evening, as usual, was lots of fun. I almost always suffer the following day because a) I can’t count the carbohydrates, as I don’t know how much of what has gone into the meal and/or b) I feel quite stiff because I have been sitting all night. Oh! the joys of having a good time.
Steve and I went to Bruges again. Well, it would be silly not to take advantage of a buy one get one free offer. It was odd because I didn’t suffer any anxiety during the day. However it started with a vengeance once we boarded. I had taken a small squash bottle of vodka, and it was not long before I needed it. Our cabin was so far away, it felt like a half marathon to get to it.
Although there was air con in the cabin it was still too hot, so of course I had to fiddle with it. If anyone from North Sea Ferries is reading this, I was not the one who somehow managed to dislodge the square bit that covered the air con workings. I am also not the one responsible for Steve almost knocking himself out every time he got out of his bunk and bashed his head on it!
We had arranged to meet Natalie and Gladys (we met them on our last Bruges visit, and have stayed in touch). It was lovely to see them again. The entertainment was quite good, but the only thing missing were the ashtrays, which meant we had to go out to the deck — not an easy task with a wheelchair. However, there always seemed to be a strong, willing guy or two to open the doors for me.
Apart from the talking it was fairly quiet — an ideal opportunity to do a bit of awareness raising! Steve had disappeared, probably to the casino, Natalie and Gladys had turned in for the night, so Billy-no-mates Liz stayed on deck. Any ‘normal’ person would, when feeling a bit anxious, have gone inside, but not stubborn Liz. “I can get through this,” I told myself. In my defence, it would have been difficult to get in, get a drink and get out again, so I drank the vodka I had taken with me, not all of it, but more than I should have.
One of the guys to whom I had been chatting was driving down to Italy the following morning. Bruges? Italy? Mmm, Given the choice I think Italy would have been the clear winner. However, I think he would have noticed the bulge in his case if I had stowed away in it!
I can’t believe the awareness raising I did that night, and the promises made, and yet nobody has sent huge amounts of dosh, or even emailed me (remember, as I write it’s November). Anyway, c’est la vie, evening over, and off to bed!
I was up early the following morning, not suffering from mal de mere, I think it was more mal de hangover. I made my way on deck with a coffee and to get some fresh air. Deviating for a moment, I hadn’t realised it had been a full moon the night before, and I managed to get a ’photo of the moon at one end of the ferry and one of the sun at the other.
As I have said before, it doesn’t take much to make me happy. Steve, Natalie, Gladys and I set off for Ostend, but the weather was cold, wet and windy, so we stayed in Bruges — yep, should have gone to Italy. We spent the day coffee bar hopping and shopping.
Back on board, and after eating I was out on the deck again with all the other lepers, aka smokers. Before long we all had our mobile ’phones out, reading jokes. I decided to have an early night, as the decorators were coming. I have to say at this point it was, SMS-wise uneventful, apart from the anxiety.
When I got home there was a note from David, which read ‘Go and look in the bedroom. No decorators today, the builders are coming instead.’ A big wet patch on our new ceiling. The builders came and did something on the roof and went again. This saga has been on-going since early September. This is the kind of thing a lot of people would, quite rightly feel stressed or anxious about, as it’s not just the ceiling, but the fact that space is limited because everything barring the mattress has to be stored elsewhere. In this type of situation, the most I feel is cheesed off. SMS anxiety is usually unwarranted.
We had our charity committee meeting this month. As secretary for the charity I should write the minutes, but it’s the only job I can delegate, and I do. The ‘only’ thing I have time to do is use the computer and ’phone. Sounds easy, doesn’t it?
My step mum, Joyce and I went to see The Buddy Holly Story. An enjoyable night, and I have had my music ‘fix’. The only problem when going to the theatre is the downward slope to get to the seat. Even with a walker it is impossible to do it alone. If I had my way everywhere would be either flat or slightly on an incline — whichever way one is headed.
November 2008
I started with a cold last month and it seems to have developed into the closest thing to the ’flu I have ever had. We had tickets to see the comedian Frankie Boyle, of ‘Mock the Week’ fame. Not a chance of me being able to go. So, armed with every device known to man and a big box of tissues, I resigned myself to the sofa and TV.
The following day was even worse. I was supposed to be going to the local folk club to see Benny Gallagher (if anyone has managed to wade through this diary, you will know he is in my top 10). I was determined to go, and took a dose of almost everything in the medicine drawer, but by 6pm I knew I would not make it…and had to ’phone to cancel.
I was in that state between sleeping and waking up and could hear myself singing ‘Surrey with a fringe on top’. As I began to wake, I was feeling quite cross because I knew I wasn’t singing the song at the right speed — I blame the pony, it would not get into trot. It was only when my eyes opened, I realised the pony had been keeping time with the drips from the ceiling. I guess a more appropriate song would have been ‘Raindrops keep falling on my (bed).’ All this in one week!
Carol (one of my PAs) and I decided to rearrange the concert and theatre programmes, which I have collected over the years, and adorn the walls in the loft simply because we could not think of anything better to do. The loft is the one room in the house in which I get anxious, because there is so little to hold on to.
Anyway, there we were, nails, hammer and frames in hand. We decided what was going where, but when I started to hammer a nail in the wall, which was an arm’s stretch high, my anxiety levels rose. My back went into spasm, as did my legs. I felt as though I was trying to hold up the wall with greasy arms. The only thing I could do was ask Carol to hold me. I then sat on the floor. The spasms stopped, but I was shaky for quite a while. Carol made the coffee and I acted as the supervisor, while she carried on alone. So all was not lost!
It was a feeling reminiscent of the day, many moons ago when I was ‘stuck’ up the steps, painting the garden room — if only Carol had been there that day I would not still have the inch long scar on my shin (you need to go back to the time it happened to understand what I am talking about).
It’s strange how one lives with the day-to-day pain of SMS, almost accepting of it. Yet when an incident happens, which causes real problems, be it anxiety, rigidity or spasms, it’s yet another reminder that life will never be ‘normal’ again. Oh well, I suppose these things are sent to try us. Speaking of health issues, Chris has been diagnosed with glandular fever, which means no riding. He is still going to college, but apart from tutorials he is unable to do anything else.
I believe David and I are the only two people in the UK who are praying for rain at the moment. We need to see if the work on the roof has cured the bedroom ceiling problem, as we are still sleeping on a mattress on the floor. Oh, I almost forgot — my brother Steve came over to do something on our web site. Before he started, he said: “I’ll just have a look at the holiday sites”. Before I knew what had hit me, six of us were booked to go to Faro, Portugal, next month! Thank heaven for £2 flights and inexpensive hotels.
December 2008
December 5th and off we go to Faro. We stayed in a lovely hotel. Quite amusing, really, as the room Chris and I had had a shower, whereas the other two rooms had a bath. At first I was a bit disappointed, but having tried the shower, both Chris and I were amazed at the places the multiple shower heads managed to reach — without actually knowing how it did it! I have never known Chris spend so much time under water, apart from when he goes swimming.
The Christmas decorations in the village were superb and the main streets were adorned with red carpets. Having said that, it is not the most disabled friendly place. I had to push my wheelchair everywhere as the pavements were so uneven (even on top of the red carpet). The kerbs were, as is the norm in Europe, very high — yet another barrier for someone in a wheelchair. The front wheels are small, and therefore even small holes are enough to get jammed into.
Because the pavements were so uneven, I had to hold someone’s arm, as well as push the wheelchair. I would grab whoever was the closest — perhaps that’s why everyone tried to stay ahead of me! Obviously we managed, but I felt I was constantly holding the others up. It’s strange how anxiety makes one walk with hunched shoulders. When this happens to me, I find I can only look forward. I can only turn my head if I stop walking.
Chris was desperate to find a gift and Christmas present for his girlfriend. Almost as much as I was to find a florist. One of my weirdo obsessions is to beg, buy or purloin a cactus plant every time I go on holiday. We were both successful. The girl in the florists asked me if I had MS, as I appeared to resemble her mum. As you know, I don’t waste an opportunity to raise awareness and gave her an SMS business card. She promised she would give it to her mum’s neurologist.
We did so much walking that after our three day break I felt shattered and really wanted to go home. As we were driving back from the airport, we were all looking at the clock on the dashboard, and when it struck midnight, we sang Happy Birthday to Chris. When we felt we had embarrassed him enough, we had to find other things to torment each other about — much of which I could not possibly let you know about, as most of it was aimed at me.
It took a while for me to recover and I am now wondering if these mad cap ideas of going on short breaks is really worth the anxiety, which of course can descend on me at any time, anywhere, and happens for reasons best known to itself.
Great news, we have had rain! Actually, not so great, as the ceiling is wet again. Believe it or not, it happened yet again when I was away. Another reason not to leave David home alone. However the builders came out again. I am at the stage where I know who drinks coffee, who drinks tea, and who takes sugar. Anyway the saga continues, and we now have to wait for rain again.
We had a low key Christmas. A lazy day-ish. We had a late Christmas diner at my brother Martin’s house. Most people eat about 2.30pm, but I only eat one meal in the evening. Martin and Sue’s son, Jack, has autism. Eating later meant he could continue his routine. Sue had had an operation the week before, but still managed to cook a super main course. I made the starter and deserts.
We saw in the New Year’s at a party with friends. For the first time we didn’t have Chris with us — he had gone to a party with his friends. Why do our kids have grow up? Wasn’t it was only yesterday I was changing his nappies, and then in the blink of an eye he is a young man going to college. Our only use now is to provide food, clean clothes, act as taxi service and a cash machine.
Our daughter Eloise has had her demons to deal with, but is hoping to start college again. And so we say goodbye to 2008, and hope 2009 brings us all the things we need.
January 2009
How can it be another year? Time really does fly by more quickly as one gets older. So, where to start? Oh yes, last month I said short breaks are becoming a bit difficult. So why when my brother Steve rang did I agree to go to Bruges in February and a five day trip to Spain, Gibraltar and Morocco in March?
I was in the kitchen watching breakfast TV and ‘Mr Motivator’ was showing the nation his exercises for the day. As I was feeling in fine fettle(!) I decided to join in. Walking on the spot, arms up, arms down, in, out, shake it all about. Before you think I have made a miraculous recovery I must point out it only took about three minutes. Feeling pretty good with myself I glanced out of the window to see two men in a van outside, both looking in my direction. Obviously they would not have known I was following an item on the TV...
David and I bought a Wii as a joint Christmas present. It’s fab! Great exercise. I ‘do’ ten-pin bowling and tennis. I have experimented by playing it while sitting in my wheelchair. If one has some upper body strength, it can be done. I play right and left handed as I don’t want to have a muscular right hand, and bingo wings on my left arm. I play with as much gusto as if I am really am playing. Unfortunately I injured my hamstring during a game of tennis. Don’t feel so surprised. By now you must know I have a mad gene.
I’m sorry to start talking about the bedroom ceiling saga again but it really is getting to me now. The builders say the problem is the flat roof. The guy who put the roof on says not, but has been and patched it. It’s rained and guess what? Tthe ceiling is wet again…
An independent roofer confirmed the roof is the problem. One particular day there were so many people here, I didn’t know if I was coming or going, and decided to get in touch with Trading Standards. By the end of the day I was shattered. I went to bed — still just a mattress on the floor — about 11pm. I was feeling anxious and could not get comfortable. I watched the TV, but could not concentrate.
For the first time in almost a year I felt I may be going into panic mode, so I got up and watched a film. I felt very rigid, but thankfully no spasms. Of course, I headed for the vodka and contemplated getting drunk. Thankfully I had my sensible hat on and only had one small glass. I rubbed my ‘sore spot’ while telling myself to stay calm. (You need to look back to last April, if you don’t know what I am talking about).
I toyed with the idea of staying downstairs, but decided to go back to bed with my MP3 player. I still couldn’t settle, and instead of listening to the music, all I did was wonder what the next song would be. 3.30, 4.30am and I was still wide awake. Anyway, I must have fallen asleep at some point, but was awakened by David’s alarm at 7.15am.
As you know, my house is an ‘unregistered coffee shop’ and today everyone and their dog called in, interspaced with the ’phone ringing. By the evening I was in no fit state to cook and we ended up with a take-away and, for me, an early night.
Do any of you remember your dreams? Last night I dreamt I was chasing a car, as the driver had my money and passport. I chased the driver down a motorway. I have no idea if I caught the culprit (I think I must have, as no money is missing and my passport is still in the drawer). The only point of relating this is that in a dream, why am I not disabled? Weird ! One bit of good news is that Chris is now able to ride again.
February 2009
I’m not sure if I have mentioned the fact that sometimes I don’t get the warning signs of a hypo. On one particular occasion all I felt was a bit sleepy. Deciding I needed the loo, up I got and off I went. I remember resting my head on the cistern — and the next thing I heard was David and Chris telling me to drink some Lucozade.
At some point later I awoke to find myself lying on the study floor, covered with a blanket. A moan from me brought the two of them to my side: “Are you back with us?” My reply was “Yes, but my bottom is freezing” (neither had thought to pull up my jeans). A hot wheat bag arrived a few minutes later and the problem was rectified.
What a wonderful family I have. Well, that’s what I thought until they showed me the photograph one of them had taken while I was in the loo. They had covered my “bits” which would have caused offence, but it was a horrid picture. The problem is that because I am such a technophobe I don’t know how to delete it from the camera. It’s a Canon camera, so if anyone out there can help me out, please send me an e-mail with step by step instructions!
Last month I agreed to go on two short breaks. Little did I know the first one, Bruges, which I and my brother have been to twice, and is basically a cigarette run, had somehow turned into another seven family members’ break. Anyway, I almost single-handedly (with a little help from Chris) managed to cause havoc during the entire break.
The Thursday morning of the day of the holiday was fine. Anne, my cleaner, came and when she had finished we had our usual coffee and gossip. I needed some cash from the hole in the wall and then had to up pick Chris from college.
But in the hour before I was due to set off, the snow fell heavily and suddenly it was about 2ins deep. There was no way I could get to the car, so Anne kindly did the honours and helped me.
With minutes to spare we were, time-wise back on track. My brother Steve picked us up and off we went into Hull to get brother Martin, wife Sue and nephew Jack. Before we left my house I had thought about going to the loo, but as the journey to the ferry was about 10 miles, I thought I could wait.
Thanks to the snow it was four hours later before we arrived at the ferry. Can you imagine how my bladder was screaming? Anyway, once the problem was dealt with we set out in search of our cabins. Chris and I shared with Steve and Sue. As usual it was freshen up, eat then watch the entertainment. Chris got up to dance, and made friends with all the others in his age group.
When the music had finished, Steve and Sue went to the quiet area. They had taken my drink with them and I had told them I would join them shortly. Well, obviously, that was not going to happen, as I was having so much fun with all Chris’s new friends. It was about 2.30am when we arrived back at our cabin. I will spare you the details of the wrath we incurred from Steve for not joining him and sue and then turning up in the middle of the night.
The following morning we got off the ferry and drove to Bruges. The problems were apparent from the moment we got out of the car. Liz, as per usual and as determined as ever to be independent, held everyone up. The scenario was this: Steve and Sue, hand in hand walking around; Martin, Sue and Jack in the middle (with Jack wandering off at any given opportunity) and Chris and I at the back, trying our best to catch up — even with the help of a wheelchair and Chris, it was not an easy task.
By the time we got back to the car, I still hadn’t got the Belgian chocs I had wanted to get as a thank you for Anne. Anyway, an argument started — and everyone (it seemed to me) felt I was to blame. Looking back, I can see now I had been selfish. I had had offers of help, but declined them. If I had let someone push me, we would have got around much more quickly.
Back on board the ferry and another night of fun and frivolity beckoned for Chris and I (everyone else had gone to bed). This time, all the youngsters were from Belgium. We had so much fun, and it was about 5am when we finally rolled back to the cabin. We had the help of two guys, as Chris was a bit worse for wear, and I, being a woman, have no sense of direction (apologies to the women who do). I don’t think Steve and Sue appreciated being woken up again. Whoops! I spent the following day apologising to the family. Thankfully the apologies were accepted and normal family relationships were resumed.
On the 20th David came home from work early. He was not a happy chappy as he had been told — out of the blue — that he was to be made redundant. I know we are not alone, it’s happening all over the country, but when it happens to you it feels pretty scary. He feels particularly bitter about what’s happened as he has done so much for the company and he felt he was being cast off like so much rubbish.
March 2009
I have been given an exercise bike and have ridden it every day. Each week I add another mile. By week three I realised three miles was my optimum ‘journey’. With my MP3 firmly in my ear — only one ear, or I would not be able to hear the ’phone ringing — I am cycling from Land’s End to John O’Groats. Just for the record, I am still in Cornwall. I have discovered I can complete my three miles before Bob Dylan finishes ‘Desolation Row’.
This month David seems to have been on an endless journey of constructing proposals, counter proposals and attending meetings with regard to the redundancy. He has worked from home quite a lot, mainly because of the effect on my health. The anxiety symptoms have led to a lot more stiffness and spasms. The trio is back! I have also had numerous hypos. Thankfully (touch wood, fingers crossed etc) I have not had a panic attack. I’m not sure either of us could cope with that.
Despite the doctors telling me nobody has ever died from a panic attack, when it happens it’s easy to believe I would be the first. My poor sore spot is getting quite sore itself. I’m finding it hard at times to be supportive because of the effect all of this is inevitably having on me.
David’s ‘support’ needs are quite simple — a foot massage, an assortment of chocolates, a cooked breakfast — nothing major. But even a cooked breakfast is out of the question when at times I can’t even stand to use the grill and need help virtually 24/7.
I listen to what he says, although understanding David’s job is an alien concept to me. He works in the media which, as usual, is at the forefront of the recession assault (it’s all to do with advertising — the media is built on advertising and in a recession, advertising is the first to go, hence the huge impact on newspapers and the media in general).
But the whole thing has been made so much worse because the person behind his redundancy is someone he thought was a friend. The old saying about keeping your friends close but your enemies closer is no use when the friend turns out to be the enemy. I’ve never seen him so bitter — he puts a great store on loyalty and he obviously feels this is the ultimate betrayal. I’ve never seen him so stressed, even though he tries to hide it from me to protect me.
It never rains but it pours: David’s redundancy, the effect it’s having on me — and now Chris has contracted glandular fever, commonly known as the kissing disease. The up side is that at least he is being kissed. The down side is he can’t ride, as his spleen is enlarged. At times like this, is it any wonder we all feel we must have done something dreadfully wrong in another life to deserve all this?
I can’t really think of anything amusing that has happened this month. Don’t let it put you off reading my diary, as I am hopeful things will get better. With any luck, humour will be restored as soon as possible. Actually, I tell a lie, there was one incident: David came home one evening feeling particularly down. During the conversation I said: “Don’t worry, at least we have each other and our health.” It was only when he gave me a strange look that I realised we only have the former. Between us (at the moment) we have five slipped discs, tennis elbow, diabetes, hypothyroidism, SMS and a cataract. And none of that includes Chris! Lack of sleep does not help matters either.
And just for the record, we are still sleeping on the floor because of the roofing problems. It’s an annoying factor, but a typical one for us. Still, I’m sure we will get there at some point.
April 2009
Well, this month really has been like the Curate’s egg. Chris, Eloise, her fiance, James, and I went to my niece Clover’s 18th birthday party. David couldn’t go as his brother was arriving for the weekend. The following probably sounds weird — to a non-sufferer at least — but it seems the more I am looking forward to something, the more anxiety I suffer. If I can get the anxiety out of my system the day before an event, it helps.
For the party, I made sure the present was wrapped. I showered and put on my face. Got out the clothes I would be wearing. All done! However, as the time to go drew closer, I could feel the anxiety starting. Even a small thing like getting dressed was difficult, as I was shaking inside. Why??? I couldn’t even write the card, David had to do it for me.
By the times James came to pick us up I was almost ready to throw in the towel. The only thing that stopped me was knowing that once there, I would be okay and enjoy it. I had to enlist the help of David and James to get me from the house to the car.
We arrived fashionably late (because we got lost). All the family were there, and lots of people I hadn’t seen for a while. It took some time for my back to settle down, but by the end of the night I was on the dance floor with Clover’s boyfriend. I would say dancing, but I think that would be an ambitious statement.
Just so you know how totally bizarre SMS is, I will now tell you of my next venture. We have a Silver Bond in the 2010 London Marathon. Virgin is sponsoring the Marathon, and I was invited to attend a bond holders’ reception in London. As the funding would be coming out of the charity, I opted for the most economical train fare — but for £2 extra I managed to go first class! Great idea as it costs £2.50 for a coffee (free in first class) in the pleb’s seats (where I would normally sit).
I got everything ready the day before and I didn’t suffer any anxiety, so I assumed it would hit me on the day. Read on! I was up at 6am, showered and dressed, and ready (no anxiety, and only mild back pain). David took me to Beverley train station at 8.30am. A train pulled up on the other side of the station at 8.45, and it was only when the driver shouted across to us, asking if I was going to Doncaster, that we realised we were on the wrong side of the tracks... In my (limited) experience, the Doncaster train always departs from the side on which we were waiting.
I had to grab my overnight bag and climb over the bridge and David carried my wheelchair — not really a task one wants to undertake with five dodgy discs. But we managed it (first of the travel problems). Once on the train, I spent a moment or two wondering if or when my brain would realise I was alone, and decide to punish me for daring to do such a thing.
Having arrived at Doncaster, I found myself on the right platform. My connection train pulled in and in front of me was carriage B. I was booked on carriage L. So off I went as quickly as an SMS sufferer with a wheelchair and an overnight bag could go. I found carriage L and pressed the button to open the door, but it didn’t. Press, press, press — and the doors still wouldn’t open. Then the train pulled out without me. How dare it? (second travel problem).
Almost as soon as I had closed my mouth in disbelief, Brian O’Brian — a porter who always seems to be on duty when I get the London train — appeared with a colleague. “Liz, I’ve been blowing my whistle to get your attention” (call me dense, but who would pay any attention to a whistle being blown at a railway station?).
Fortunately the next train was due to in 10 minuets and Brian stayed with me until it arrived (if you’re reading this, thanks Brian). Two cups of coffee and the company of my MP3 player saw me quite nicely in to Kings Cross at 12.30pm. I managed to cross three main roads to get to where I was going, the number 73 bus stop.
From that point I began videoing what I could of London for an SMS sufferer in Australia (I may have SMS, but I am a woman, and can therefore multi-task).
Deviating for a moment, sad though it may seem, I love the 73 bus route, in fact so much so that if anyone knows Ray Davis of The Kinks, then please ask him to write a song about it — it could be the new Waterloo Road!
I was going to the London Museum and knew which stop I needed. Just to make the hat trick of travel problems, the driver announced there had been an accident and the bus would be taking a different route. Fortunately, after asking around, I found a guy who was also going to the same place and we got off together (I mean the bus).
He offered to walk with me, but as I would have held him up, I declined. The museum was fab, and I even managed to get the staff to narrate and do the videoing for me. Big thanks to them.
Time was pressing and I needed to be on my way. The exit I wanted was at the opposite side of the building. It also meant I had to use the lift. No problem, well, actually it was. Everyone and his dog were using it. Once I got in, I found I was the only person wanting the floor where I could exit the building. So I was up and down like a fiddler’s elbow. Eventually I made my escape.
I knew where I needed to go to get to the university and set off. I stopped a woman on the way to ask if she knew where I could get a coffee. She asked if I had MS, as I walked rather like her husband, who has the condition. We must have talked for about 20 minutes. It turned out she was a nurse and so I gave her an SMS card and she promised to do some awareness raising in the hospital in which she worked.
Anyway, no time for a drink now. I rushed off to meet Pam (our chairman) at the university. In we went and were greeted by four Virgin co-ordinators. I honestly don’t know what came over me, but before my brain got into gear, my mouth started.
Somehow I managed to get all four of them to ‘buy’ my SMS business cards, thereby raising awareness and cash for the charity. Plus, half the sponsorship from one of the guys who is going to do the Trans-Pennine walk next year.
Once inside, Pam started chatting to a representative from another charity. Off I went, telling Pam I was going to mingle. I spotted a guy with a Virgin badge on and lied my head off by telling him I had made a bet that I could get £10 for my charity before the reception began, and £10 found it’s way out of his pocket and into my hand. Can it really be this easy, I wondered? Well, only time would tell. By the time we went back in, my front pocket was bulging.
The evening started out with a quartet of drummers called The Drum Café. Everyone in the hall each had a bongo drum, and after instruction from the band we all had a lot of fun — and sore hands.
The speeches about Virgin Money Giving were short and to the point. Good thinking, as it keeps people focused. Thankfully Pam was listening for both of us, as I was plotting my next move (anyone who knows me, or has managed to wade their way through my diary, knows by now that I will stop at nothing when SMS is involved).
As we left the auditorium, I kidnapped my bongo drum. One of the co-ordinators told me where the band were coming out, so while everyone else was tucking into the super buffet, I was negotiating a price for the safe return of the said drum. We settled on £10 and a Ghanain 2,000 Cedis note (which I later found was worthless). One of the guys asked if I would like to keep the drum. What a silly question — of course I would; it would go very nicely with all the instruments we have at home.
Off I went in search of Pam. She had filled a plate with all my favourite food — salmon, salad, salmon, pasta and more salmon, yum, yum. As the evening drew to a close, Pam and I said our cheerios. The next thing I knew was I was sitting in a bar with the Virgin lot. It is debatable as to who asked whom, and the debate carried on. Perhaps we will never know the answer to that one.
Someone bought me a Guinness while I got out the video and began filming. Fortunately, there were a couple of people who had not contributed earlier — and how could they refuse when I was filming them?
Each time I sat down, another drink appeared — it would have been rude not to drink them! Sir Richard’s daughter was there, too. How embarrassing is it when having been introduced earlier one forgets their name? I knew it ended with a ‘y’, and to be honest after a few glasses all I could do was point the video (which by this time was a bit wobbly) and say “Hi Molly, Polly, Holly, which ever is the right name.” Naturally I made sure she had one of my cards. She is a doctor and said she had heard of SMS.
At this point I would like to thank Vince, Kevin, Jeremy, Scott, James, Roy, Andrew, and Fiona not only for the money they donated, but for putting up with me. All I can say in my defence is that I remain extremely passionate about my charity, even after consuming copious amounts of the afore-mentioned booze.
When the taxis arrived, I discovered they had ordered one for me too. I arrived at my God-daughter Dawn’s home about midnight, and found the taxi was pre paid. Yes, I feel another thank you coming on.
It was pitch black, and I didn’t know which bell to press — so I pressed all of them. Well what else could I do? Anyway, after being let in, I fell asleep as soon as my head hit the pillow. I spent the following morning playing with Dylan (Edward and Dawn’s son). At five months old he is a bit young to teach the bongo to, but he did try.
Dawn walked me to the bus as my back was beginning to pay the price of the day before, and I needed her help to get on. Everyone got off at the stop by Euston station, so I followed. By this time my back and legs were yelling “Enough’s enough”. I didn’t have the time to rub my sore spot, or the energy to take my bag and bongo drum off the wheelchair, which would have enabled me to sit down.
The 73 bus was in sight, and for a ‘normal’ person it would have been a minute’s walk. I managed to walk very slowly toward the station, but I had to ask for help to get across the bus lanes as they had a small downward slope. I felt so frustrated and angry. Yesterday I was walking without my shoulders being hunched and I had a smile on my face. Yesterday I could have conquered the world, but today I have to pay the price for that privilege.
Somehow I got on the bus to King’s Cross and again needed to ask for help for the one in two slope at the station. Once on the train I began to relax. After all this time one would think I would know which is the instigator — anxiety, spasms or rigidity, but I don’t! All I do know is that if one starts, the others follow.
The journey home was uneventful and gave me time to count the donations — £138 and a bongo drum! I have decided to keep the bongo for myself. Perhaps I can use it to ‘drum’ up some awareness raising when needed — or they may just pay me to stop!
One day, for reasons unknown, I decided to decorate the conservatory. I knew I would not be able to reach the pointy bit at the top, but I was not going to be put off. So, prep finished (that’s the bit I don’t like) and paint, brush and pad to hand, off I went. I was a woman on a mission. By the time painting the pointy bit approached I was feeling tired. I decided to leave it until the next day.
The next day arrived, and all I had on my mind was my determination to finish the painting. I opened the steps to make it into a ladder and put it up against the wall. “Quickly, quickly before you loose your nerve” I told myself. My mind was taking one step forward and two back. No, it was playing stupid games with me again. Therefore the closer I got to the ladder, the more anxious I became. I remember thinking that it would be easier to rob a bank.
I took myself upstairs and shed a few tears. They were tears of anger and frustration. The job got finished, but not by me.
We went to a party at my step-mum’s house. Yet again, I had to go through the pre-anxiety state before enjoying myself. Having arrived, and a glass of wine later, I began to relax. It was really funny as I became the focus of attention of all the youngsters (nieces and nephews) at the party.
I was telling them a story (Ok, so I embellished bits here and there). They sat wide-eyed as the story progressed. However, it was even funnier watching the adults watching me, wondering what was going on. I made the kids promise not to tell any of the adults what the story was about. My sister came over the following day and, despite her attempts to find out what the story was, I left her in suspense.
By the way, if you have been following my rantings about the bedroom, you will be pleased to know it’s done, finished, ready, hurrah!
I was planning to put a wish list on this month’s diary. However, as we won the Lotto, perhaps I don’t need to. Actually it was only £10. Anyway, here’s number one on my wish list: To go to the Galapagos Islands to see George, the only surviving tortoise on one of the islands (I even have a picture of him in the kitchen). Naturally I would take my tortoise, who is also called George, even though he is a she. Yes, even I am aware of how my brain rambles and diversifies as it wishes.
So that was April — pretty eventful, eh? There was something else, though, what was it? Oh yes, David was made redundant on his birthday by those nice people he worked for. I can’t begin to tell you how he feels but I think it’s the disloyalty and betrayal that hurts most. I’ve never seen him this distraught before and hope I never do again. He built the business for them and to be discarded so callously is completely unforgivable.
May 2009
Thank heavens this month has been relatively quiet. I have managed more letters, emails ’phone calls and Skype calls and completed a couple more questionnaires, although my ‘to do’ tray doesn’t look very different…
I had my diabetic check-up which went well, and David went away with his brother for a few days to play golf and escape the bitterness that is lingering over his redundancy — and I was determined to be okay while he was away, which I was, although my sore spot was worked overtime. So May came and went SMS-wise rather uneventfully.
June 2009
This month started with a visit from one of the group members and his wife. They started by asking if I knew anyone called David and Mary P? Well, yes, actually, they are neighbours. What a small world! They belong to the same caravan club.
We’ve also had two long-weekend visits from David’s brother Mike (I should start charging him rent). It was actually quite timely — on one occasion I begged a lift back with him to his home near London as part of my journey to see my sister, Claire, in Brighton. Not only did it break the back of the trip, but also saved on costs, so perhaps I’ll have to let him off the threat of rent for future visits.
The rest of the journey to the south coast was uneventful but I enjoyed a few days R&R with Claire before she brought me home. We’re now completely gossiped out (for the moment, anyway).
Chris has finished his first college course and has gained a distinction! The real work starts in September when he begins his two-year National Diploma in Horse Management. Let’s hope he can get through without any broken bones this time.
Although on the face of it this month hasn’t seemed any different to other months, when I looked at my calendar, just about every date was related to GPs or hospital appointments for either David or myself. That tells a story in its own right.
I must confess I’ve been in rather a strange mood, as well. Not exactly feeling sorry for myself, but I have spent a lot of time (too much time?) wondering what life would have been like without all the health issues. I can only conclude that I must have been very bad in a former life — or been in the wrong place at the wrong time in this one. Who knows? Anyway, enough of this mood — if anyone out there wants to cheer me up, they can text me some jokes: my mobile number is 07792482918. I like any kind of joke, as long as they are not cruel. So get sending — think of it as Liz therapy!
July 2009
OK, a new month, a new mood. And my turn to host our Come Dine With Me evening. The weather was kind, which was good as we were having a BBQ. It was a treat to be able to sit in the garden at 11pm without freezing. In fact, I don’t think there was a goose bump in sight.
Our wayward daughter Eloise came over for a meal. It was good to see here. I couldn’t help but notice that she ate more than her normal miniscule portion, which was very pleasing. Don’t know if it was a one off, but it turned out she’d run here for most of the way — eight miles! Just thinking about it tires me out…
But it did remind me that when she was in her second year at high school (age 13) she was the second fastest cross-country runner. If she had kept it up who knows what she might have achieved? Similarly, when David was at school, he was very much into cricket and was asked to go for trials with Yorkshire — until they realised that although he lived in Yorkshire and his roots were in the county, he wasn’t actually born here and therefore was ineligible. Probably just as well — by the time he was 16, his passion for the opposite sex had replaced his love of cricket…
Talking of cricket, the Ashes are on at the moment, so we’re both glued to the TV. I am in touch via Skype with a couple of sufferers in Australia, and it felt so good when I casually dropped into the conversation the fact that we’d won the Ashes. I wondered if they noticed? (Yeah, right — I’ll bet they were gutted but were never going to admit it to a whinging Pom).
We were invited to my brother Simon’s 50th birthday party in London. Chris and I went, while David stayed home to look after the dog. Actually, I think he wanted a bit of ‘David’ time. When I think about it, there is never a day when he gets time alone and everyone needs some breathing space.
Anyway, Chris and I set off. The plan was that I would ring Simon when we got to his local station. As regular readers will probably realise, things rarely go to plan. Sure enough, it didn’t this time, either.
After several ’phone calls and no reply, I started to get anxious. Fortunately, I spotted two policemen in their patrol car outside the station and asked for their help. Did they know this address? Apparently not — they peered at their map and both gave me different directions!
Anyway, it was either the wheelchair or my winning smile (I favour the latter) that prompted them offer to take us there. As good and kind as they were, it’s a good job it wasn’t an emergency as we were all over the place looking for Simon’s home. It didn’t help that perhaps I’d slightly misled them with the wrong address. Anyway, when we finally sorted out that minor detail and we arrived in the right street, I discovered we were missing another vital clue. The house number. I thought it was 24. When we got there I realised it wasn’t so we kept on driving, mostly in the seemingly vain hope that I’d recognise the building even though I’d only been once before. You guessed it — I didn’t…
Finally, with frustrations building and the patience of our Good Samaritans close to breaking point, Chris rang David who simply looked in the address book. If only we’d thought of that first time…
Turned out the number was 124. Well, I was only a hundred out. When we got there, Simon was outside waiting for us. Fortunately, our kindly coppers had a good sense of humour and asked if it would add to the fun if they took me in — in handcuffs. I would have been up for it, but unfortunately my back wasn’t. I did ask if they would drive round again but this time with the lights flashing and the sirens going, but apparently that is illegal.
Even so, I loved the look on my brother’s face when I was escorted in — in truth, helped to the door by one of the officers. Footnote: the reason I could not get an answer when I ’phoned was because everyone was in the garden with the karaoke machine going full blast. Long trip, very eventful and loads of fun — just another day in the extraordinary life of an SMS sufferer from Yorkshire.
I saw my neurologist this month as my back is giving me more prolonged rigidity. He has suggested I try swapping my meds around. Obviously this will be a lengthy process as I will have to meter the changes for at least a fortnight at a time. He also wants me to have an MRI on my lumber spine. The last time I had one was during the diagnostic procedure, and I didn’t like it at all. Read on to see how I got on.
Mike has been here again but unfortunately David‘s now got golfer’s elbow quite severely to add to his bad back so no golf was played. Ever resourceful they did the next best thing and watched the real thing on TV. Lazy devils…
August 2009
I am continuing my mix and match with the medication. The only difference is that I am sleeping more. I joined the ‘fell asleep and missed the end of the film’ society a long time ago, but at the moment I am lucky to be awake at 8pm.
I have also had an MRI scan. I felt quite calm during the procedure. Just goes to show how being doped up with muscle relaxants helps.
On a lighter note, we were invited to a neighbour’s 40th birthday party. He has had a games room built at the bottom of the garden. We all had a fab time with dancing in the garden, plus pool, darts and quizzes in the games room. Best of all — enough food to feed the guests for a week. Actually, that wasn’t the best bit; the best bit was the fact it was only a two minute walk home (how sad is that?).
The best news this month is that David and I have completed three months without a cigarette. I used Champix tablets. David preferred the nicorette inhaler. The downside is that I have put on 7lbs. I now weigh in at 8st 5lb — that may not sound heavy, but I am only 4’ 11”. One weird side effect is that I can now remember all my dreams. Why do we always wake up just when the good bit is about to start?
Despite the fact that I have complained about my lower back pain getting worse, since stopping smoking, I have rarely had severe back spasms in the mornings. Which is something for which I can be eternally grateful.