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 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? The 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 might 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, 4.30 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 pursued 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 fiancй, 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 Ј2 extra I managed to go first class! Great idea as it costs Ј2.50 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 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 Ј10 for my charity before the reception began, and Ј10 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 Cafй. 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 Ј10 and a Ghanaian 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 also 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 — Ј138 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 Ј10. 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 we both came up north and she stayed a week with us. 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 in the whole school. 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 bobbies 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 club. 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 buggers…

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 still 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. 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. Something for which I am eternally grateful.

September 2009

I have received the results of the MRI scan I had last month and it seems I have a protruding disc in the lumber region. The problem with this is that I don’t know if it is the SMS or the disc causing the lower back and left leg pain.

I went to the theatre to see a comedian — can’t remember his name, he was that good. There were six of us and were living the high life — we had a Box, just like posh folk and royalty (you’d know why that was funny if you knew my family). The only problem was that I had to kneel on the seat to see the stage and that gave me pins and needles in my legs and lower back pain. A real double whammy and an expensive  price to pay for my airs and graces.

Afterwards, there was a fireworks display going on to celebrate the start of the 2009 Round the World yacht race which started, of all places, in Hull. We drove down to the harbour to get a closer view and just as we found the perfect viewing place the last firework went off. Not the best of evenings, I must say.

I attended another Virgin Silver Bond Holder’s reception in London (all to do with the London Marathon in April 2010 in which we have a runner). I was staying in university halls of residence in Covent Garden, so I decided I’d have a walk around. And then the heavens opened. Walking on slippery pavements was a nightmare and I can’t remember how many people I asked for help but assistance was invariably given willingly, even if directions were all over the place.

I finally got back to my digs, soaked to the skin and, because I was travelling light, without a change of clothes.

I had managed to reserve places at the reception for Kofi, one of the group members who lives in London, and for Doctor Shahrzad Hadavi who, if all goes to plan, will be carrying out the SMS research programme.

I was surprised at the SMS differences between Kofi and me. I don’t believe anyone would think we have the same condition. I walked, pushing my wheelchair, while Kofi walked with two elbow crutches. My back sways in the lumber region, whereas Kofi’s body seems to bend at the waist and his upper body looks as if it is trying to keep up with his legs (you’d have to see to get exactly what I mean but I’m sure you get the gist).

Later, Shahrzad and I sat outside the union bar discussing SMS. At some point one of us decided we had better make a move or it would be morning. We tried to find our way out but as all the doors were locked, the only way was down some steps to a road neither of us recognised. Fortunately, Shahrzad had a GPS ’phone, yet we still had to walk around a fair bit just to get a satellite lock to find out where we were in the first place.

In the end, we found somewhere I recognised and Shahrzad rang her brother for a lift. How sweet of him to come out at such a late hour! After he had secured my wheelchair in the boot, he asked where I wanted to be. Ah... the address was in the back of the wheelchair. Ho hum, just AN Other minor inconvenience to overcome.

It had been a long day and I slept like a log for what was left of the night. But I paid the usual price for so much activity and was quite stiff the next morning. I had to resort to sitting in my wheelchair and that’s no easy feat on the streets of London (or anywhere, for that matter). For those of you ‘normal’ people reading this, let me tell you why: there is a camber on most pavements which means one arm has to push the wheelchair while the other has to pull just to stay in a straight line. Kerbs are a no-go area and constantly you have to look for suitable crossing places to get across the road. And then you need a weather eye for any bumps or holes in the pavement, otherwise the subsequent sudden stop upon encountering such an obstacle would see the user hurdle forwards out of the chair and landing in an unsightly heap on the ground.

Anyway, pavement attack over and back to the story: My plan was to do some sightseeing. The big question was, where do I get a bus to see the changing of the guard at Horse Guard’s Parade? (I know everyone in London seems to use the tube, but that’s another no-go area for someone in a wheelchair). I needed a bus, bendy or otherwise.

I stopped this chap in a smart pin stripe suit and asked if he knew where I could get the aforementioned bus. A puzzled expression spread across over his face as he cogitated. He had no idea. Fortunately for me, though, my Good Samaritan was early for his meeting and decided to make me his good deed for the day. Rolling up his sleeves (metaphorically speaking), he grabbed the wheelchair and we set off looking for the bus that would ferry me to my chosen destination.

He was a game guy, I’ll give him that. He had no more idea than me that we would end up walking what seemed like miles, passing bus stop after bus stop, until we finally found The One. What a sweetheart he was.

After discarding my friendly assistant (I think he went to a nearby hotel to recover from his unexpected ordeal), I jumped (sic) on board the next bus to arrive. Only to find I had to get off at the very next stop…

By now my back had eased up a bit and I decided to walk the last bit. My timing proved impeccable — the changing of the guards was due to start in the next few minutes.  With the help of an obliging attendant, I even managed to find the perfect place to witness the spectacle.

While I really enjoyed the event, it made me sad to realise that some of those young men on horseback, performing so elegantly and precisely, may be going to war the following day. A sobering thought.

 I spent the rest of the day either walking, sitting or on the bus. I ended up at the British Library, where I arranged to meet Cyril, an old friend, at 5pm for coffee. My train was due to leave at 6.15pm but as the station’s barely five minutes away, we had plenty of time for a natter and a catch up.

When I boarded the train home, I discovered my ticket was lost in the bottomless pit of my handbag — it’s a woman thing. Although I knew I was supposed to be in standard class for the return trip, I decided to get on the same 1sst class carriage I used on the outward journey. Imagine my delight when a message over the intercom told people to stay in their seats as the train was due to depart. And no one asked me to move! So there you go — today has proved to be my lucky day.

October 2009

This was a short month (not literally, of course). The only thing of note was our committee meeting. Pam, our chairman, stayed the weekend and witnessed by increasingly severe back spasms first hand. Thankfully, the actual meeting didn’t last long, but never the less I felt anxious and a bit shaky for a while. It was probably due to the anxiety of hosting the meeting. As per usual, once the event got started, I began to relax. As I have said in the past, it must be very difficult for a non-sufferer to comprehend this sort of reaction to such a run-of-the-mill event. November 2009

David and I went to a local folk club to see Rod Clements, formally of the Geordie pop band Lindisfarne, who wrote one of their hits Meet Me On The Corner. And a good night was had by all. I even got Rod to sign a poster for me. It is a small world, though, isn’t it? The next morning I made one of my very infrequent trips to the bank and who should be there too? You guessed it — Rod Clements. So I managed to say something incredibly cheesy: “When you wrote Meet Me On The Corner, I didn’t realise you meant this morning”. It wasn’t actually as dumb as it sounds — the bank is on the corner of the street… I think he saw the funny side.

David’s been struck down with severe sciatica. He found the pain unbearable for weeks; he couldn’t find any respite in any position, didn’t get a night’s sleep for weeks and couldn’t even stand up to go to the loo. Not nice.

For me, though, the strange thing is that I cope far better when things like this happen and I’m needed. However, it did make me realise how much walking is involved. For example, if we wanted a drink, it was two trips to the kitchen as I can only carry one mug at a time. I’ve also been walking the dog, but it takes me so much longer. I drive to the play area and park the car alongside the path, as it’s easier to get the wheelchair in and out of the back seat. To a normal person, the path appears flat, but it’s not I promise you. I sit in the chair for half the walk and, if I feel up to it, I push it back. If not, I sit in it until my arms are worn out and turn around using my feet to push me backwards.

One day, Ollie (my dog) had gone exploring and sniffing new smells. So I sat alone and waited. It must have seemed a bit strange to see this lone woman in a wheelchair just sitting on a path going nowhere and doing nothing. True to form and proof yet again of the compassion of most people, a passerby on a bike stopped to make sure I was OK.

Another day, on the same path while out with Ollie, I was listening to my MP3 player and singing away no doubt at the top of my voice when a weird thought jumped unbidden into my head — if there was anyone behind me now they would think a cat was being strangled by an odd-bod in a wheelchair.

It’s strange how much more there is to see when one is in a wheelchair. I often come back with something from my walks — dandelions for my tortoise, dog wood branches for their beautiful colour, all sorts of weird and wonderful things. One day I found a piece of wood. OK, nothing particularly unusual about this, I admit. It was a just a nice shape. So I put it on the chair seat and carried on walking. A few minutes later, a good-humoured woman passed by and asked with mock sincerity: “Is the wood not feeling very well today?” “No” I replied, “I am keeping it in protective custody as Ollie keeps trying to chew it”. (My guess is he won’t try to chew the holly I will be getting next month).

The end of the month and David is still in a lot of pain. To be honest, I am not coping quite as well and have increased my medication. I can’t possibly let him be worse than me!

December 2009

There has not been much cheer this month. I saw my neurologist about my increasing anxiety. He prescribed Citalopram, but after reading the possible side effects, I have decided to wait until the New Year before I start taking them. David has had an MRI, which showed a sizeable protrusion in his lumber region. I anticipated he would be in hospital before Christmas but no, his consultant has gone on holiday until January. David also had to postpone his pain clinic appointment as it was the day before Chris’s 18th birthday party as he is usually a bit spaced out for about 36 hours after the treatment.

The party was good fun and almost every member of the family from the north, south, east and west came to join in the celebrations. Big thank yous to all the family members who helped us out with the catering.

I coped OK until about mid-afternoon. Then the anxiety kicked in, which led to rigidity. One of the family members staying with us finished the last of the cooking, while I had a gabapentin washed down with a glass of wine. It helped, but I was still shaky both while in the shower and getting ready.

I was still struggling as the party began that night. I took my walker, but still needed help to get into the venue. In fact, it took a while before I could relax enough to enjoy the evening. Poor David was suffering too. To be honest sometimes it’s a bit hard to keep a smile on one’s face when in pain, and I think we were both happy when it was time to go home.

We had a busy Christmas Day. Our friends Ray and Vanessa paid us a visit and we made a quick trip to a neighbour’s, and then went to see Eloise. We spent the rest of the day — Christmas dinner included — with my brother Martin, his wife Sue and other family members. As always, a good time was had by all. I didn’t get anxious or suffer much with rigidity that day. I’m not sure why the day was OK. The only reason I could think of is that from getting up the day was so busy my brain became so confused it couldn’t find the right lane to overtake my body!

Of course we have had a lot of snow. Very pretty to start with, but as the French would say, pas des plus de pas dans le neige (no footprints in the snow). Well, not mine anyway. There have been no happy chappies in the Blows household this year. Chris’s New Year parties began around the 29th and we didn’t see him until 2010. So at least he had some fun!

 

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.