Wednesday, 30 April 2008

Polly in a Polo

Although I like to dominate the medical emergencies in our family I can't claim exclusivity. This week Polly decided to get in on the act.

Polly, for those of you who may not know, is a children's entertainer and actor. Last Thursday she was performing in Silhouette Theatre Company's adaptation of Oscar Wilde's children's story The Happy Prince at a primary school in South London. During one of the rapid scene changes one of the other cast members caught her a glancing blow on the temple with the statue of the prince. She saw stars but being a trooper and faced with a hall full of children she had no choice but to carry on. After the show ended Bob, who had wielded the princely blunt instrument, asked her why she had been holding the side of her head. She told him that he had clonked her with statue and Bob, who is amongst the top five people least likely to hurt someone in the whole country, was duly mortified. Anyway, they packed up and came home.

That night Polly's head hurting but she was sure she'd feel better in the morning. She was performing on Friday and Saturday and there was still the usual round of birthday parties for the boys to attend, shopping and household stuff to do. The headache continued and she complained of feeling nauseous but life didn't stop. By Monday it was getting ridiculous, she was getting very little sleep and we were both getting anxious. That night I put my wheel down. If she didn't feel better by the morning she had to see a doctor. Polly was getting more and more stressed. The consequences for all of us if she were ill were far reaching.

Next morning she headed up to surgery and was diagnosed as having concussion. She was told to go to the hospital to get checked out thoroughly in case there was bleeding on the brain. Bleeding on the brain! Blimey. Polly is an avid viewer of Casualty and Holby City and therefore knows all about the potential severity of a sub-dermal haematoma. She knew only too well that the poor doofus at the start of the program who bangs their head , ignores it, and then feels a bit sick will end up at the wrong end of a scalpel. Usually after wiping out a bus load of school children.

Obviously the doctor in E.R. had watched the same episode and sent her for a CT scan. Which is how Polly ended up on her back lying in side a giant Polo mint.

No bleeding was found and she was told the concussion will fade. The nausea has subsided which is probably as much to do with a reduction in her stress levels as anything else. When she got home she said pointedly, “at least I have medical confirmation I have a brain,” as she surveyed the state of the children I'd been left with.

Tomorrow is Blogging against Disablism Day so please join me here. If you would like to link to this site then please do. Apparently the more linked up I am the easier it is for search engines to find me. Who knew?

See you tomorrow.

Tuesday, 29 April 2008

It gets Personal

It is amazing the number of people who become involved in your life when you are disabled. You have care agencies, the wheelchair service, district nurses, G.P.`s, occupational therapists, social workers, and a plethora of carers. That's not to mention the engineers who pop in to maintain equipment such as hoists, ventilators and wheelchairs, or the specialist doctors at places like the Royal Brompton Hospital. I know I am fortunate to live in an area where services have not been pared to the bone, but at times it can be a little intrusive.

A couple of weeks ago, at the height of the Chickenpox plague, Tina, the district nurse came to call. She was armed with a lengthy form which she warned us was a pretty intimate affair. Apparently it was to decide whether I come under social care or nursing care. This is important (to them) because it determines whose budget my 'care package' comes out of. It also determines what services are available to me.

The first few questions were innocuous enough: basic information about the nature and extent of my disability, morning and evening routines and so on. But as we progressed ever deeper in to this extensive and free roaming assessment form the questions became more and more intimate and personal. The extent to which I could wash myself, help needed in the shower and how long transfers take. By the time we got on to continence issues I was beginning to glance nervously at Polly. Was I catheterised? Did I want to be? There then followed a distressingly frank account of how such things would impact on our sex life. By this time Polly was busy examining cracks in the ceiling and I was calculating Pi to 13 decimal places. The final straw came, when with a perfectly straight face and with the true detachment of the health professional, she asked, “and how big is your Willy?”

Later, after Tina had gone, Polly looked me straight in the eye and asked, “so on a scale of One to Ten, just how excruciating was that?”

Yesterday, we were told, there had been a case conference about me. It had finally been decided that I had moved from social care over to nursing care. Heaven knows on which criteria they based their decision.

Sunday, 27 April 2008

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.

Saturday, 26 April 2008

The wonder of Walfotd

I wish I lived in Walford. Aside from the mix of colourful characters with colourful family lives and sociopathic neighbours, I want the wheelchair the Branning kid has. I only follow EastEnders so I don't know if Coronation Street and Emmerdale are awash with disabled characters. Maybe the sets are just like a Mobility Roadshow. with wheelchairs whizzing all over the place. All I do know is that wheelchairs and the disabled generally are peculiarly absent in and around the Square. There's Janet, of course, the child with Downs Syndrome, but I understand the character Honey, her mother, is leaving the show this summer and presumably will take her daughter with her. Besides, Janet is rarely seen out and even though she is under Two she seems to be able to look after herself whilst Billy's selling fruit and veg and Honey's doing service washes in the laundrette or both of them are socializing in the 'Vic.

Just recently we've had a few appearances of 'Hevver`s fearsome mother who uses a mobility scooter in much the same way as a ram raider goes shopping. She's not exactly disabled – unless you count malevolence as a disability.

And so at last along comes a bona-fide disabled character, Penny Branning, daughter of Jack, who is paralysed after a car accident. She has an amazing wheelchair. It apparently levitates down the steps of her father's flat and up the flight to her aunts. Either that or she has a team of engineers building ramps wherever she goes. Unfortunately it must be the most uncomfortable chair on the market.. I'm no expert (well I am actually) but those armrests look awfully high to me. How does the poor girl wheel herself? And her dads flat looks pretty small – does it have space for an adapted bathroom? What about Tanya's house. I've seen no evidence of a downstairs toilet. These things worry me. I think the problem is that the actress Mia McKenna Bruce is not actually paralysed, or indeed disabled in any way. I don't hold that against her you understand but it does mean that the producers don't have to think about the reality of the situation. Oh yes, and how many dropped curbs have you seen on Albert Square?

I suppose its no worse than Neighbours. Admittedly I haven't watched it since kylie and Jason got married but I seem to remember various characters going blind or being paralysed. in sundry accidents; milking the story line and then either going off for rehabilitation or more frequently benefiting from a miracle cure. And if I here one more character say they'd rather die than be in a wheelchair for the rest of their life...

Oh well, until next time, good bye.

Thursday, 24 April 2008

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.

Wednesday, 23 April 2008

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

Tuesday, 22 April 2008

Call An Ambulance

Sorry for the lack of Blogging over the last few days. I've been in hospital. I'll tell you the whole sorry tale tomorrow. Not to spoil the ending for you but... I live.

Thursday, 17 April 2008

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!


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.

Tuesday, 15 April 2008

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.

Monday, 14 April 2008

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.

Saturday, 12 April 2008

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.

Friday, 11 April 2008

A Pox on your House

Welcome to my blog and we start by plunging into the deep end of family life. What a week! I have two children, both boys, aged 8 and 3. Let's call them M and S. A couple of weeks a go S caught Chicken-Pox. He was miserable and spotty but was soon on the mend. Meanwhile M had just a few spots on his back that barely interfered with his playing on the Nintendo Wii . Soon it was back to school and nursery. All was well until the next day when Polly noticed a couple of new spots on M. Not to worry, you can't catch chicken-pox twice, can you? Apparently you can. M was soon more spot than boy. He had a high temperature and vivid blistering spots everywhere, including one actually on his eyeball. As a result there were a couple of visits to the eye hospital and several virtually sleepless nights for Polly as she dabbed on Calamine lotion and administered Calpol. Now all this might be considered unfortunate but all part of the ups and downs of family life. But...

Polly, for the past six months, has been diligently training for the London Marathon. The marathon is this Sunday and all the training regimes stress the need to get lots of rest. No where does it suggest that 6 hours sleep in 72 is the ideal preparation. A lot is riding on this Sunday. Polly has put in countless hours of training and raised several thousand pounds in sponsorship for the Muscular Dystrophy Campaign. Friends are travelling from all over to come and support her. Unfortunately the poor girl can hardly keep her eyes open. Well, okay says you, kind and concerned reader, surely now is the time to show how much you love her and be the one getting up seven times a night to minister to your sick child. Oh that it was that simple. You see getting in and out of bed is a 20 minute ordeal each way. It involves electric beds, hoists and ventilators. It involves glide sheets and the precise positioning of a wheelchair. It involves a great deal of effort. It is actually easier for Polly to run 26 miles on just a few hours sleep than get me in and out of bed. Besides, M sleeps on the top bunk and I couldn't reach him however much I wanted to.

So if you see an orange clad, small, bobbed haired women sleepwalking the Marathon this Sunday remember that she's actually getting more rest than normal.

Goodbye until next time.