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 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 scariest 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 2Ѕ 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”. “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, 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 both 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 Ј80. 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 cafй 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 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 deaf. 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 wheelchair users at the front of the queue 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 canibinoid. 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 minuets 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 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 that everyone had a smile on their faces. 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 Ј10 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 Ј10, 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 with them, during which 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 necessary psychological crutch.

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 73 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 the “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. Did I have back spasms? Yes. Were my trunk and legs rigid? Yes Was I suffering with anxiety? Yes. Should I have even attempted the task? Perhaps not.

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 years ago. 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. At this point I must tell you that many sufferers use either alcohol or cannabis, as they are almost instantaneous analgesics.

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 assessment. 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 aforementioned 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 Ј2 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 showerheads 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 to 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.

 

Stiff Person Syndrome.

This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.

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The group and charity was set up by Liz Blows with the following aims:

(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.

(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.

(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.

"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.

SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.