Hot Coals And Needles

I may have a problem posting over the next few days. My left shoulder is on fire, burning as if a hot coal has been pushed into the socket. Meanwhile my right knee has equally hot needles inserted under the kneecap. I'm not sure what I've done but I wish hadn't done it.

Sober analysis of the situation causes me to accept that I have probably damaged the shoulder trying to persuade my weakened left arm to behave normally. Just now I can't even lift a sandwich from a plate to my mouth, even with cunning use of balance and leverage of the wrist and elbow. My knee seems to be twisting during hoisted transfers, particularly in and out of bed. The resulting injuries are relatively minor but are exacerbated by constant repetition. I can't not eat and I have to get in and out of bed. It's all a little wearing.

Now, exactly how much Morphine Sulphate is it safe to take?

Polly Come Quick - It Broke

Cast your mind back all the way to new years eve. As the country prepared to party and light overly loud fireworks Polly and I, exhausted from and at the whim of a week of temporary carers, prepared for a reasonably early night. Carlotta and Abby arrived and got in each others way but somehow got me ready for bed. But then the familiar cry went out, “Polly, Polly, quick. Come!”

The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.

Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”

The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.

Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.

One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'

A Series Of Unfortunate Events

I enjoy writing this blog, it keeps me entertained and apparently one or two of you as well. It does, however, present me with a problem. How much detail should I go into when discussing the ups and downs of my disability? Of the hundreds of you who will read this I only know in the real world a handful of you. The vast majority of you will only ever know me through this blog and the miracle of cyberspace and the picture I paint of myself is the one you are stuck with. My sunny nature, sweet disposition and fabulous good looks are something you have to take on trust. Unfortunately (for me) some of you really do know me. You may be one of my family, taking the occasional peek to check I'm not libelling you, or may be an ancient and decrepit friend from childhood who with rhumy eyes seek desperately for glimpses of lost youth and the hope of an immortality of sorts by mention on these electronic pages. (See you soon guys.) Equally you may be someone from my youth, with hopefully fond memories of teenage dalliance or sweet college days who read this blog out of affection and to provoke remembrance of when we were young, carefree and with the future laid out before us with it's tangle of paths not taken. Or you are someone I meet at the school gate, drink coffee with and go out with to the cinema or the occasional quiz night. The question is: how much do I want you to know? And equally importantly: how much do you want to know?

As the more astute among you will have realised I've been going through a difficult time recently. One of the reasons I started this blogging business was because back in April I realised that the FSH Muscular Dystrophy that affects me was starting one of its periodic stages of decline. Slings and hoists have been introduced into my life, afternoon sessions on the BiPap are now necessary, uninterrupted nights sleep are a thing of the past. But these things, though wearing, are bareable and in some ways even improve the quality of life. There are other aspects that are just plain miserable though, with no redeeming properties whatsoever.

Yesterday was the straw that broke the dromedaries spine. I'll keep the details vague, but it involved bathrooms and no time for hoists, humiliation and misery. It was the culmination of a series of horrible occurrences that pushed both Polly and me to the brink. At 3.15pm we called the doctor and at 6.10pm Dr Toosy arrived for a house call. There is no magic bullet but I have the feeling that a ball has started rolling down a hill of badly mixed metaphors and I have no idea where it will come to rest. Something needs to happen because if it doesn't I don't where I'll end up. In some ways it's a relief that things have come to a head. There is a kind of peace that comes with admitting you can't carry on as before, even though you have no clear idea what you can do about it. All I can suggest is that you keep reading and I keep writing. Wish me luck.

A Pain In The Chest

There is little more unsettling for a man in his 40s than a pain in the chest, particularly the left side of the chest and down the left arm. I know it is unsettling because I have just had such an experience. On Friday I became aware of an ever increasing ache down my side and I have to admit I was getting a tad nervous. I casually mentioned it to Polly who immediately rang for an ambulance – Oh no she didn't, I forgot, she rolled her eyes and reminded me that a few months a go I'd had an ECG and that my heart was determined to be the fittest thing about me. “Besides,” she added, “you never get ill on a Monday morning, it's always bloody Friday night when casualty is shot full of drunks and getting someone to look after the boys is virtually impossible.”

“You don't care,” I muttered.

Polly spent the next 40 minutes listing in exacting detail the many many ways in which she cares for me. Once we'd passed helping me go to the loo, cutting my toe nails and practically dying during the birth of my second son, she sailed on with reminding me of the nights she'd sat by my bed in Intensive Care and the times she moved my shoulder, leg or head in the middle of the night. “And. . . and. . . I married you!” I said I was sorry.

I spent the night in some degree of pain (physical not emotional) and tried to work out what was happening. I realised it wasn't my heart, unless I had been been grossly misinformed during biology classes at school, and the heart was actually located outside of the ribcage. The pain felt muscular and was most acute when I moved my arm in certain ways. And then I remembered. That morning when I was being hoisted from the bed to the wheelchair I had partially slipped out of the sling. At the time I had felt a sharp jolt of pain in my left knee as my weight was suddenly transferred to that joint and I had been distracted from any other damage done. I must have wrenched one or more of the muscles on the left of my chest.

Saturday was miserable as every time I moved my left arm I was incapacitated by pain all down my side. Every now and then Polly would say something along the lines of “And I cooked you a roast chicken last Sunday even though I'm a vegetarian!” It was a long long day.

Sunday morning dawned at last. Polly mentioned that she was also the one who drove me everywhere. Kalepo and Godfrey got me into the wheelchair and helped me in the bathroom where during getting washed one of them moved my arm in such a way that something went clunk. Not click – clunk. The pain suddenly eased. Not a lot but enough to give me hope. It still hurt but the sudden intense sharp pains were better. As I left the bathroom I heard Polly call out “I wonder who cares enough about you to do all your dirty laundry?”

Now it's Monday and I'm taking slightly fewer painkillers. It still feels as if a particularly vicious bison has kicked me under one arm but I think I'll feel better sometime soon. . . when is Christmas? Polly seems to have forgiven me (Lord knows she's had enough practice) but still occasionally drops in an “Oh and I care enough to. . .” into a conversation.

I'm going to have some tea now. And yes, Polly's cooked it.

Bernie, the Bolt

I knew it would happen and now it has. We have started having evening care. So far it's only for two evenings a week, Mondays and Fridays. The whole 'going to bed' process is taking longer and longer and we both agreed that Polly needed at least a couple of nights off a week. (Polly has just looked over my shoulder as I write this and said that I make it sound as if she's going out clubbing on those nights. She doesn't of course, she goes out binge drinking.) (Oh, all right then – it's because she now has to help me go to the loo and adjust my feet on the wheelchair footplates umpteen times a day, gets woken two or three times a night to move my head, legs or shoulder, and make cups of very strong coffee on demand.)

I have resisted evening care up until now, not because I don't appreciate the help, but because the carers can arrive at any time and I don't want to go to bed at half past seven. After some negotiation the care providers have agreed to let me stay up like a big boy until at least nine o'clock so long as I don't want a bedtime story.

Last night two carers duly arrived post nine o'clock eager to help. We all agreed that rather than wait for me to make the laborious and time consuming transfer to the lavatory by myself they would use the hoist. Now it may come as a surprise but I have never been hoisted on to the loo before. So after some moaning about the type of sling that was used, we were under way. As my trousers were removed and I was lifted, semi-naked, by two strange women I muttered my mantra “Dignity, at all times dignity.” Unfortunately when you are aiming to be hoisted on to a toilet accuracy is important. It took several attempts and I began to feel as if I were partaking in a truly bizarre version of The Golden Shot. Bernie, the bolt, please.

Getting in to bed proved every bit as difficult. Some how the sling wasn't placed properly and as I was raised up into the air my naked bottom began to slip out and I was left dangling precariously as the carers frantically pressed buttons on the hoist remote control causing me to swing like a mooning trapeze artist. Dignity, always dignity.

Wheel Meet Again

Getting a new wheelchair was proving difficult; the Samba Quickie's tilt mechanism was only working intermittently and now I had discovered another problem. The armrests were the wrong shape. This may sound like a minor complaint, after all an armrest is an armrest is an armrest surely. Well yes and no. The thing is an armrest is also something to grab hold of when transferring from the bed to the chair and most particularly from the loo to the chair. Try as I might I couldn't get a hold of the darn thing. Not for the first time I stuck on the lavatory. In fact I was stuck between the two. The hoist was not an option because I was kind of lying sideways in an unstable tangle of legs, arms and wheelchair. I yelled for Polly.

It took much pulling and pushing and to be honest, a great many expletives on my part, before I regained a seated position, my composure and my dignity. By the time this had happened I loathed the chair with a passion I had previously reserved for the likes of Margaret Thatcher and people who let their dogs crap on the pavement. Needless to say I went back to using the Harrier and the Samba was taken away.

Fiona from the wheelchair service, however, is nothing if not persistent. Sometime later the Samba was back with a new armrest, designed to meet my exacting standards. Mind you, the tilt mechanism was still only working intermittently. Even so, I was persuaded to give the chair another go. So I set out in it to pick up the big boy from school, It is less than half a mile to the school but it was a pretty scary journey. Every time I there was slope, such as one caused by a tree root or a driveway, the chair would slew in the downhill direction. More than once I very nearly went over the curb which would have been catastrophic. I couldn't work out what was going on. I don't want to boast but I'm a blooming good wheelchair driver and I was sure it wasn't me. I made it back home with M, but as soon as I was it was back to the Harrier and bye bye to the Samba.

A few months later Fiona was back. This time she came with a man from the manufacturer. He watched me use the chair and sucked air through his teeth, The problem was, he said, that the seat was set too far forward; this meant that my weight was over the unpowered small front wheels. The chair was basically impossible to steer safely. It was also the reason that the tilt mechanism was so unreliable. He said he'd have a think. The chair was by now so familiar with the way out of the flat it could make it's own way back to the van.

I didn't see the Samba for quite some time. When Fiona rang last week to say she wanted to give it yet another go I was, I admit, a bit ungracious. Okay, but this is the last time, I growled. After all, if there was even the slightest chance it might work this time I owed it to everyone to give it a go. Not that I held out much hope.

That was last Thursday. I'm sat in it now. It arrived complete with an engineer who made some minor adjustments to the position of the controller. The tilt now tilts, the wheels now steer and I must say it's very nice. I can lie back in it which is exactly what I've been doing today, out in the garden, in the sun. Lovely.

Where There's a Wheel There's a Way

For quite a while I've needed a new wheelchair. My trusty Harrier is rusty. I've had it for 10 years and I've just about worn it out. The frame is spotted with rust and the bearings make a slightly disturbing grinding noise. The arm rest is cracked, as is the head rest, and the seat is beginning to sag. More importantly, Fiona the very nice lady from the local wheelchair service, is concerned for my posture. Apparently I lean too much to one side and because I don't use footplates around the home I keep running over my own feet. So, I've been measured up and quizzed about my needs and expectations, I've been observed at home and outside, and I've shown her how I need to sit to work on the computer. This all started eighteen months ago.

The thing about a wheelchair is that it has to do everything. I have to be able to transfer in and out of it, I have to be able to eat at the table from it, work from it, brush my teeth from it, and watch TV from it. I also have to be able to get it in to our adapted van and safely lock it in position. It has to be able to get me to the local shops, park and library. The wheelchair has to be able to get me to the local primary school to pick up the boys, and be able to carry my 4 year old .home when he is too tired to walk after a hard days water play, colouring in and learning his shapes.

A wheelchair is a very personal thing. I'm in mine from the moment 1 get up until the moment I get back into bed. People say that a new wheelchair must be like getting a new car. It is, but it's also like getting a new pair of shoes, and an armchair, and a workstation, all at the same time. You have to get it right or your whole life is messed up.

The chair Fiona decided would be ideal for me was a (don't laugh) Samba Quickie. On paper it looked ideal; it was an indoor/outdoor chair and it had a tilting mechanism that would allow me to adjust position. Perfect. I was loaned the chair to try out for a few days and full of enthusiasm I transferred into it and set out to give it a proper test run. That is I would have done had I been able to transfer into it. The seat was all wrong. It was too rigid and I ended up balanced on it like one of those 1970s toys, a Weeble (Weeble`s wobble but they don't fall down)., only I did fall down. Or at least I would have done if Polly hadn't caught me. They took the chair away.

A month or so later it was back with a new padded leather seat. Great. Now at least I could sit in the thing. It was undoubtedly comfortable and I loved the tilting. I was left the chair and settled back to enjoy the mechanism. Except it wouldn't tilt. And then it did. And then it wouldn't. I was getting motion sickness and the chair hadn't gone anywhere yet.

I've got to go now, I've run out of time. I'll tell you the rest tomorrow.

Up, Up and Away

One of primary purposes of this blog is to document the changes in my condition. l. have Facioscapulohumeral muscular dystrophy (FSH), the 3rd most common form of the disease. The name describes the usual distribution of weakened muscles: facio=facial; scapulo=shoulder blade; humeral= upper arm It is estimated that between 1,200 to 3,000 have the condition in the UK. Now hang on for the sciencey, medical bit and you will know more about FSH than 9.999% of said population and more than most doctors. I quote from the Muscular Dystrophy Campaign website.

FSH is a muscle wasting condition that
affects both men and women. The
condition is caused by a deletion (loss) of
a piece of genetic material (DNA)
towards the end of chromosome 4. This area
contains a number of repeated units
of DNA. Normal individuals have between
10 and 100 of these repeats whereas
those with FSH have less that nine. In
general, the fewer the number of repeats,
the more severe the condition.

I have just 2 repeats. As it was explained to me – I'm a sucker for a metaphor – imagine a train. You, dear reader, are like one of those trains you see in movies set in the Mid-West of America, a seemingly endless string of carriages, wagons and boxcars trundling through the prairie. I on the other hand am the equivalent of Thomas the tank engine pulling Annie and Clarabell along his branch line. In short, I've been short changed by the Fat Controller.

The degree of muscle weakness varies
greatly from person to person - 10 to
20% of people eventually require a
wheelchair while up to 30% can remain unaware
of symptoms into old age. The
majority of people affected by FSH though will
present symptoms somewhere in
between these two points.

So on a scale of severity (where 1 is the most severe and 10 is where you are still skipping in your 90s) 1 come in at about 0.5. I tell you this not because I crave sympathy, I'm far too brave and uncomplaining for that, but to set myself in some kind of context for you. My experience of the condition is that it deteriorates in steps. You go along for a period of time with nothing much changing and then you have a brief period of fairly rapid deterioration before things level out again. At the moment I'm going through one of those stages of deterioration which is one of the reasons for this blog, to help me keep track of what's going on.

This week has seen a particularly significant marker for me. For the first time l needed to be hoisted off the loo. I got on the blooming thing but it took so long and so much effort that I simply couldn't get off it. Faced with being stuck 'from Monday to Saturday` I had to consent to being hoisted. So, humming 'He Flies Through the Air with the Greatest of Ease` I was lifted high and swung around towards a new stage in my life.

See you next time.

The Bowels of St Helier

Now where were we? Oh yes. About to get into bed.

At home getting into bed is no simple matter. In the past I was able to do a side ways transfer on to the bed, but the recent deterioration in the Dystrophy has meant Polly has had to help more and more: this involves a great deal of pushing and shoving and a fair amount of swearing. We have had a ceiling fitted hoist in the bedroom for some years that had never been used. Reluctantly, in the last month or so I've had to submit to using it. Polly attaches a sling around me and hooks it on to the hoist. I'm then winched inelegantly into the air and manoeuvred across to the bed. Polly then attaches the ventilator mask to my face. I lie down and she lifts my legs into position, adjusts the duvet and finally, if she is lucky, collapses into bed herself.

In hospital, with it's teams of nurses experienced in manual handling, you think getting in to bed would be a breeze, a welcome chance to be expertly and professionally whisked in to bed swiftly and with dignity. You'd think.

The nurses fetched a portable hoist and fitted the sling. Hooking it on to the hoist proved something of a problem. The trick is to make sure the hoist is in exactly the right position. and angled precisely. Or alternatively you can faff about like headless chickens and use brute force. At last I'm up and dangling above my wheelchair, which a nurse tries to push out of the way as if it is a manual chair. She can't of course, it is much to heavy. From my elevated position I advise using the joystick control and then watch as it hurtles off around the bay like a demented R2D2.

When I eventually land on the bed I am shifted into the correct position and Polly, who has been looking on with a mix of mild concern and suppressed giggling, finally gets to fit the mask, start the machine, and head for home. I settle down for the night.

Never, ever go in to hospital if you need to rest. You are continually being woken up to take medicine, have your blood pressure and temperature taken, and you are either too hot or too cold. I slept fitfully as the pain finally subsided and in the morning felt much better. A doctor came to see me and explained what had happened. If you are anticipating some exotic complication linked to the Dystrophy prepare to be disappointed.

In the course of of the day I have to take a number of pills, some of which are some fairly powerful painkillers, like Tramadol and Morphine sulphate. Such medicines have side effects, in this case a binding one. X-rays showed a blockage in the small intestine: at last it was official – I'm full of crap.

The cure, as you can imagine, is simple. I was prescribed an industrial strength biological equivalent of drain cleaner. Mr Muscle sink and plug unblocker for the bowel. Sorted. Time to go home. Of course, it is never that simple. I don't know if it is just me but once they get me into hospital they are reluctant to let me go. “We'll just keep you in and keep an eye on you,” said the smiling consultant.

At lunch time Polly arrived with the boys. You could see every one slamming on the assumptive brakes and reassessing me. “Are they yours”, a nurse asked casually. I resisted the temptation to say that I only rented them and admitted they were. Interestingly there was a subtle change in attitude towards me from then on. They also noticed I was reading a novel set in medieval Cambridge at the time of the plague. People started to speak to me a little less slowly and a little less loudly. Even so, the woman bringing the drinks round still asked the nurse if I took sugar.

I was in for another night. We repeated the hoisting business and it only took 20 minutes to put the face mask on. To my delight I found that the TV was working. TV is no longer free in hospital. They have these swish TV/phone combination things that swing round on wall brackets. You speak to an operator and pay to use them. Fortunately whoever had my bed before me had anticipated a longer stay but had gone home before they'd used all their credit. (At least I hope they went home.) The rates are extortionate. The wife of the man in the bed opposite was renewing the credit on his TV/phone and was complaining to the operator about the fact that every time she rang her husband she had to listen to a message telling her how much the call would cost. The message lasted a minute and cost her 39 pence every time. No wonder her husband used his mobile phone most of the time, sitting directly under the sign strictly forbidding the use of them. The nurses kept threatening to confiscate it but he'd nod and smile and carry on regardless. Incidentally he bore a striking resemblance to Donald Sinden, apart from the terrible sore on his leg that was being treated using maggots.

The next day I spent waiting to be discharged and medication to be brought up from the pharmacy. I was discharged at 10.00am but it was gone 5.00pm before I was released back into the wild. It occurs to me that if they employed a few more people to speed up the pharmacy then huge numbers of beds would be freed up hours earlier, more people could be treated and those who were would spend a lot less time waiting. But what do I know.

Despite all my moaning here my foray into the NHS was quite a positive one. I was successfully treated, the staff were friendly and caring, and virtually everyone washed their hands between patients. I'm sure that there are huge improvements still to be made but despite what you may read in the Daily Mail, the NHS is a long way from total collapse. My sincere thanks go to everyone who helped me.

Unless something else happens join me next time when I tackle EastEnders.

Good bye and thanks for reading.

P.S. Do feel free to leave a comment even if only to offer me replica watches and herbal remedies.

In to the NHS

So there I was lying in bed on Saturday night. We'd had a pleasant evening, the boys had gone to bed and Polly and I had enjoyed a curry and watched TV and everything was fine. I'd dozed off but was woken by a dull ache in my left side. I did the manly thing and ignored it. Suddenly I'm sort of sick. I say sort of because what came up was clear but with flecks of blood in it: The pain grew worse. Polly woke up at the sound of me gagging and once she saw the blood realised I wasn't attention seeking. “Oh great”, she groaned. “We manage less than a week with out a medical crisis”. At the crack of dawn she rang the doctor and I stoically endured the pain and gagging. Croy-Doc, our out of hours GP service rushed into action and dashed to my sickbed by 2.00pm that afternoon. He looked at me cautiously and prodded my side and took my temperature and did the usual doctory things. “I'll call an ambulance”, he said gravely.

When the ambulance arrived, the paramedic and the technician looked at me lying in bed and gazed anxiously at the ventilator I was attached to via a hose and face mask. “Can he walk?” they asked hopefully. Once Polly had explained that I couldn't walk, stand, hop, skip or jump they decided to bring in the stretcher bed. My friend Stewart, who is a police officer and regards the other emergency services with respect but with the suspicion that they are only doing the job they do because they couldn't get into the police service, pointed out that they might get the thing in but they wouldn't get it out without tipping me on to the floor. The corners were too tight. Eventually I could stand it no longer and said that I'd get up and into the wheelchair. (You see I'm THAT brave.)

Once in the ambulance they spent several minutes securing the wheelchair. “There”, they said with satisfaction, “That's not going anywhere.” I, on the other hand, was totally unsecured. “What about Stephen?”, asked Polly. “Hold on tight,” I was advised. I did.

St Helier, our local NHS trust hospital, was built in the 1930`s It was originally an impressive art-deco structure, perched at the top of Rose Hill. Viewed from the south it was quite spectacular, so the council built a road on the north side, so now all you see is the back of the building, a rambling jumble of extensions and incongruous new add ons. I was guided into the ER and had a canular fitted to my arm so they could take blood. After a while we were moved to the Clinical Assessment Unit from where I was sent to X-Ray and had an Echo-cardiogram, labelled Nil by mouth and left to watch Polly gleefully drink a cup of tea. Sometime later a doctor came to say they would be admitting me to ward B6. My heart sank. Eight years a go I had nearly died in ward B6, if my sister had not been visiting me and noticed I'd virtually stopped breathing, I would not be here writing this. Polly would regularly come in to find several doses of medication placed out of reach on my locker. The nurses would sorrowfully tell her that I wouldn't take my medicine, “He can't move!” she'd explain again and again. “He didn't say anything,” they would counter. “He has a tracheotomy! He can't speak.”

Eight years a go the ward was filthy. There were specks of blood on the floor and walls. Suction tubes that are inserted into the lungs to remove gunk were used and reused, equipment didn't work and patients with infectious diseases were placed in beds next to patients with pneumonia. I had been moved to the far end of the ward, presumably to get better on own. Instead I caught double pneumonia. Eventually I was transferred to the Royal Brompton Hospital in an ambulance complete with blues and twos.

Eight years later the ward had changed beyond recognition. Gone was the huge single room lined with beds with a nurses station in the middle. Instead the ward is divided in to bays and single bed rooms, the whole place is decorated in a subtle shade of anti-suicide green. The place looked reassuringly clean. I was allocated bed 10, one of four in a bay. They took away the Nil by mouth sign and I was allowed a much needed cup of coffee.

Hospitals are not designed for disabled people. No, it's true. They are designed for the sick, the frail and the injured. Disabled people upset the system. They find it difficult to distinguish between the disability and the illness you've been admitted for. A case in point: my ventilator. I use a machine called a BiPap. It pushes air into my lungs and then negative air pressure draws the air out, the result is that the base of the lung is inflated and carbon dioxide is expelled. Ward B6 is the hospitals specialist Respiratory ward. The nurses are trained in using all kinds of ventilators. Except, apparently mine. The nurses looked at it with a mixture of curiosity and suspicion. The control panel looks as if it has been stolen from the bridge of the Starship Enterprise and the mask has a tangle of webbing that can make the Gordian knot look like something tied by a brownie. The nurses begged Polly to stay and set it up.

The next problem was getting me to bed.

More to come tomorrow if you can bare to wait.

Next time - The Diagnosis

A Marathon Day (Part Three)

The Long Way Home.

Muscular Dystrophy had arranged a reception for those runners running to raise money for the charity. It was held at Westminster Central Hall, a building I have been to and worked in many times. We crossed Parliament Square and walked along side the Queen Elizabeth II Conference Centre, which took us over one of the worst things you can inflict on a wheelchair user - cobbles. Every turn of the wheels results in teeth-shattering, bone jarring misery. They might look quaint and olde-worlde but any architect or planner who wilfully designs them into their landscaping should be made to sit in a wheelchair and rolled over them for a while. Once they have collected up the bits of wheelchair that have shaken loose they will almost certainly appreciate the merits of Tar-Mac.

The reception was held in the basement of the labyrinthine building and when we eventually found it we settled down to wait for Polly and Anna. We didn't have long to wait, they arrived flushed and exhausted, proudly wearing their medals and after receiving a huge cheer from the gathered supporters settled down to a plate of spagetti bolognaise and a sports massage. Anna went off with her family and Polly, Darren, Paul and I headed for home.

We negotiated the three lifts at Westminster station and hopped onto the Jubilee line. (We were getting quite slick at this underground lark by now). To be honest Polly didn't so much hop as hobble. Checking that there was a disabled access sign, we alighted at Waterloo and followed the signs for the Northern line. We navigated a maze of tunnels and moving walkways until we came to a dead end. Puzzled, we pressed the conveniently placed assistance button on an intercom that connected directly to customer services and were told that there was no wheelchair accessible route between the Jubilee and Northern lines. Wait a sec`, the Northern Line is wheelchair accessible? Yes. And the Jubilee line is wheelchair accessible? Yes. But you can't get from one line to the other? No. Now I know it's been a long time since my O level maths but unless there has been a huge revision of the rules of topology then that makes no sense. Er... ? So we retraced our way back through the maze, with Polly moaning that she'd already run more than 26 miles today and that this was the last bloody straw. Defeated, we limped back on to the Jubilee line (we'd given up on hopping) and made our way back to London Bridge.

We eventually made it home and Paul and Darren took their leave. Exhaustion and post-race anti-climax left Polly looking a little dejected. I asked her what the matter was. She was a bit disappointed with her time of 6 hours 13 minutes. I pointed out that the last week had hardly been ideal preparation for such a marathon event and that there were several thousand runners behind her. Suddenly she smiled. I did beat the man dressed as a McCain's oven chip!

Epilogue

That night Polly and I slept soundly. Ha!

That was the night of all nights that the air mattress on my bed chose to break down. We were greeted by the sound of a concrete mixer crossed with a pressure hose. The pump was labouring fruitlessly to inflate the mattress and was glowing red hot. I spent the night on the metal frame whilst Polly had to move me intermittently. How we laughed.

A Marathon Day (Part Two)

Watching Polly disappear off over Tower Bridge was strangely emotional. Thousands of people lined the route shouting encouragement, blowing whistles and banging inflatable cheer sticks together. I began to appreciate the scale of the event, more than 34,000 people running, the vast majority raising money for causes close to their hearts. People had died running this race in the past. And there was Polly right in the heart of one of the greatest sporting events on the planet, running in the same race as Olympians, celebrities and people dressed as rhinoceroses, camels and a McCain`s oven chip. How could you not be proud?


Paul, Darren and I set off for London Bridge station again. The route took us past the London Assembly, the modern rounded glass building on Queens Walk. To my surprise it was open and since the Tower House Bar hadn't had an accessible toilet I thought that we should avail ourselves of the facilities that my tax was paying for. I assumed that the building would be wheelchair friendly and as it turned out it was. First we had to negotiate an airport style security check. I was waved through with barely a cursory glance whilst Paul and Darien were subjected to everything short of a full body cavity search. (Note to terrorists - if you want to blow up Ken or Boris find a suicidal wheelchair user.) So as I said, very wheelchair friendly.

The London Assembly Building is architecturally quite stunning, a distinctive glass globe. A vast atrium makes you think the structure is hollow. A ramp spirals the edge giving access to all ten floors or you can take a lift to the viewing gallery. A platform circles the outside of the top of the building which offers views of the river and especially Tower Bridge. There are even telescopes for those who can stand up to use them. And, of course, it has accessible loos.

On our way to London Bridge station we were caught in one of those April showers Chaucer mentioned. The kind where the clouds do away with individual rain drops and settle for emptying buckets directly on to peoples heads. We entered the station dripping and headed for the lift but were intercepted by the duty station manager. He asked if we were heading for Westminster. We were, the plan was to head for Parliament Square via the Jubilee Line and to catch Polly and her friend Anna as they reached the final stretch. He told us that Westminster station was closed west bound and wouldn't be open for 50 minutes or so due to over crowding. He told us to wait on the platform and he'd make an announcement when it opened again. So we descended in the bolshy lift again, careful not to block the doors, and waited as we watched jam-packed trains come and go. Eventually an announcement came over the tannoy saying that if the gentleman in the wheelchair would return to the ticket hall they would arrange a taxi for him. Paul, Darren and I looked at each other, this was not the level of customer service one had come to expect from London Underground. We got back in to the lift and stood well clear of the doors and made our way back to the ticket hall where we waited another 20 minutes before being told that no taxi would go near Westminster for 3 hours because of the marathon. It was then suggested that we go to the station beyond Westminster and walk back to Parliament Square. Okay, so down we went again, standing well clear of the doors, and struggled on to the next train that came along. We slowed tantalizingly as we approached Westminster station before speeding off to the frustration of our fellow passengers. We exited the train at Green Park and wandered around hopefully looking for a non-existent lift. You will not be surprised to learn at this stage that Green Park station is not wheelchair accessible. Now what?

We heaved the chair back on to an east bound train intending to return to London Bridge and seek out the station manager to thank him for his helpfulness but as luck would have it Westminster east bound was open. You have to take 3 separate lifts to get out of that station. It took over quarter of an hour before we joined the crowds gathered to watch the end of the race. The journey from the London Assembly had taken more than an hour and a half and I was worried that I'd missed Polly and Anna. Finding a vantage point to watch from was quite difficult. We headed for the finish line but were thwarted by a flight of steps. A text informed me a friend had seen Polly at the 23 mile mark more than half an hour ago. With one eye on my battery gage I headed back to the square and waited anxiously as Tarzan, a man in a kilt and the camel ran by. Some joker was shouting at the runners to keep going, they were nearly half way. If any of them had had the energy left they would have run him to ground and left Nike treadmarks all over his face. And then suddenly there she was, walk jogging along with Anna by her side. We yelled her name and miraculously above the din she heard us. I don't mind admitting I had a tear in my eye as she raised her arm to wave at me. I watched with what would have been a huge grin on my face had I had the facial muscles to do so, and saw her disappear off around the corner in to the Mall and the final 385 yards. Go Polly, go!

Next time - The long journey home.

A Marathon Day (Part One)

Sunday was Marathon day. Polly has been training since last September and at last the day was upon us. Now don't get the idea that Polly is one of those naturally athletic types who jogs and plays badminton or squash at the local sports centre. She occasionally took the boys swimming and had gone through a brief phase of cycling here and there for a while. (The cycling didn't last because S insisted on riding his bike alongside her rather than sitting behind her on the pillion. Going anywhere took three times as long as he zigzaged on stabilizers in front of her.) When Polly started her training regime she had to run for one minute and walk for two. She came back after twenty minutes gasping and wheezing saying that she'd run the 385 yards, and that it must be a terrible mistake, no one could possibly run a further 26 miles on top of that. And yet a few months later she ran a 13.1 mile half marathon in Reading. Then a few weeks ago she did a 20 mile training run. The training had paid off, she was ready. Then on her way home from the chemist she twisted her ankle and damaged the cartilage, the boys caught chicken-pox and I started to need hoisting into bed at night.

She set out for Greenwich at 6.30 on Sunday morning after a few hours sleep. I would head for Tower Bridge and cheer as she ran by. Meanwhile we had organised for someone to look after the boys and two friends had come to stay over night to help me. The plan was simple, we would travel by tube from Morden underground station to London Bridge on the Northern line. How hard could that be? As it turned out, very hard.

Morden has just installed lifts on to the platforms. Fantastic. And the lifts work. We were on our way. The only problem was that the step on to the train was about 11 inches. Now I use an electric wheelchair (a Harrier for anyone interested) which is very heavy especially with me in it. Such chairs are not designed to be lifted. Surely, since they had spent tens of thousands of pounds making the station wheelchair accessible, they would have a simple aluminium ramp available. I mean, Morden is a terminus. It's not as if the trains are whizzing in and out and there's no time to line up a ramp. But when we asked the station attendant if they had such a thing he looked at us as if we were demanding he produce a fully functioning hover -board. So, my friends Paul and Darren manhandled me on to the train. The station attendant leant a hand and you could see as a sheen of sweat formed on his brow that he was wondering if there might be a better way. Perhaps a sheet of some kind of light metal placed at an angle?

The journey up to London Bridge station was uneventful apart from a somewhat eccentric elderly lady who gave us detailed access information about a station we weren't going to. Getting off the train required negotiating a seven inch, spine jolting drop. We followed the signs and found the lift that told us in no uncertain terms not to block its doors several times as we crawled to the surface.

From the station it is a brisk ten minute walk to Tower Bridge. It was sunny and as we approached we could hear the sound of people cheering and shouting encouragement. It turned out it wasn't for us though. We weaved our way through the crowds and made our way to the Bridge House Bar and Restaurant. Muscular Dystrophy Campaign had taken over the place as a base for their supporters. It was about 11.00 and there was no way Polly could get to this point before 12.30 so we settled down to have a coffee and to enjoy the atmosphere. Runners ran by and the rain started to fall, it was warm and there were plenty of people to chat to. Oh, and there was a special Marathon menu. It seemed churlish not to try the breakfast. So we did. I was just mopping up the last of the egg when some one tapped me on the shoulder and told me that a woman claiming to be my wife was outside wanting to see me. I looked at my watch and saw it was exactly 12.30. For once she was bang on time. I ploughed through the restaurant scattering the abled-bodied before me, and there she was, hopping from foot to foot, with a beaming smile on her face. "Having fun?" she asked.

Up and at 'em

Let me tell you about my morning. At about 7.00am one or other of the children comes in to demand breakfast and I become aware of a pain in my hip. I've been lying on my right side all night and perhaps there is a crease in the sheet. Now I am aware of the pain I can't ignore it. The painkillers I've taken the night before have long since worn off and it feels as if the hip is burning. I try to move but the air mattress absorbs my efforts and if anything the pain is increasing. I finally have to ask Polly to help me, which is something I hate to do. She tugs and pulls at the sheet but can't un-crease it so I pretend it has helped and let her get on with seeing to the boys. The next two hours are anything but relaxing as I wait for the carers to arrive at 9.00am.

Jerry and Anna sign in and tootle about for a bit. Eventually they come and start the process of getting me up. First the duvet is removed and then the electric bed is tilted. Then Anna lifts and swings my legs out of the bed. The head end is then raised and Jerry sits me upright. My shoes are placed on my feet so I can grip the floor to balance and the ventilator is unstrapped and the plaster protecting my nose from the pressure mask is removed. I take a sip of water through a straw and begin to feel the burning in my hip ease. Jerry helps me move my leg in to position and Anna manoeuvres the electric wheelchair so that my knee is pushed along the side of the bed. The bed is raised and I do a controlled sideways fall in to the chair. Jerry crosses my legs at the ankle to stop me running over them and I make my way to the bathroom.

The transfer to the toilet takes about five minutes. I usually manage on my own but this morning I need Jerry to place my hand on the handrail. I make the transfer and relax a few moments. A couple of minutes later I call for Anna or Jerry to come. Jerry responds and places a glide sheet on the chair and then leaves again. At this point S, the little one, barges in and demands the potty.I start the transfer back. The process usually another five or six minutes but this morning I get stuck as I have been doing so more frequently recently and need to call for help. Jerry and Anna help me brace my arm on the chairs armrest and with a grating twist of my shoulder I slide uncomfortably on to the seat just enough to balance. Jerry and Anna leave me to cautiously negotiate my way to the handrail where I can heave myself fully on to the chair.

They wash and shave me and then we make our way back to the bedroom. Getting dressed takes several more minutes but is done with practised ease. Getting my trousers on is the only unorthodox handling, a procedure that involves tipping me bodily forward on to the bed head first and whipping them up before I fall back down. Once dressed I make my way to the living room for breakfast. Now I can start my day. Polly, of course, has already been going for hours.

All the best and 'bye for now.