They Call Me Mellow Yellow

Another reason for my summer silence was that I turned an unnatural colour. It was August, a week before we were due to go on holiday to Wales and the day before we were going to see the play Anne Boleyn at the Globe Theatre. Polly came home from work and asked me if I knew I was a shade of yellow. I pointed out that she was wearing a pair of lemon yellow shorts and that the sun was just reflecting off them. Yes, said Polly dryly, that's probably it, but just in case we'll pop up to the hospital on the off chance that it's not caused by my trousers.

Many hours later a doctor was trying to admit me to St Helier hospital because she was a bit concerned about some markers in my blood. After some tense negotiations she let me go home on the understanding that I returned first thing in the morning for further tests. But we have tickets to see Anne Boleyn at Shakespeare's Globe Theatre, I wailed. The doctor just sighed and said "you've gone yellow, Mr Deal. You have jaundice. Don't you think it's in your own best interest to find out why?"

The next day, despite my best efforts, they admitted me. I tried to explain that I am ill-suited to hospitals but the consultant dismissed my concerns with an airy wave of a manicured hand. "The pretty little nurses will look after you," he didn't quite say but might as well have done. The pretty little nurses were slightly less confidant when faced with my BiPap, wheelchair and need for hoisting, a profiling bed and an air-mattress. They looked at Polly and said, "You won't be leaving, will you?"

They wanted to stick me in a scanner so they could look at my liver but soon realised that this would be complicated in the extreme because I can't lie flat on my back without suffocating. The slightly less confident consultant agreed to try an ultra-sound, blithely unconcerned that the technician would have to achieve this while I stayed in my wheelchair. Unsurprisingly the results were inconclusive.

I spent an unhappy night plugged into a drip feeding some kind of antibiotic into my vein. The preceding two hours it had taken to get me in to the bed convinced the nursing staff and the more junior doctors that I would be better off at home since there was not an awful lot they could actually do for me. The consensus was that a gall stone had broken up and passed through my liver but since they weren't about to risk giving me a general anaesthetic so they could have a poke around they couldn't be 100% certain. Eventually the almighty consultant was persuaded by his underlings that I should be allowed to go home on condition that my GP organised regular blood tests. I fled to the car park still wearing my hospital gown.

Whatever was going on in my liver took a while to clear up because the markers in my blood that concerned the doctors remained stubbornly high for what seemed like a long time. I suffered some minor discomfort and felt a bit run down, missed a play, but, on the whole, reckon I got off relatively lightly.

Until next time.

The Boy In The Bubble

On Wednesday I was finally admitted to the Royal Brompton Hospital in London for them to try and address the problems I've been having with my blood gasses and with the BiPap alarm going off umpteen times a night. I was poked and prodded by a doctor who also (on the second attempt) took blood and analysed it. My CO2 levels are too high and as a result my blood is turning acidic, which is not as cool as it sounds. Time to take action before I turn into a blood-burning super-villain.

I was given a room on Foulis ward with an en suite bathroom. Unfortunately the en suite bathroom was not wheelchair accessible. Not a problem I was assured, and a commode was wheeled in. Deep deep joy. The room came with a fully working TV and, to my relief, wi-fi internet connectivity. It was also alarmingly chilly. Polly closed the open window.

The Brompton is a great hospital but no hospital is ideally suited to my needs. Three nurses spent nearly an hour getting me into bed that night. It was then that it was realised that the radiator wasn't working. Nurses piled blankets on me until I could no longer move at all. It was a very long, very cold night.

When at last the morning came I was sleep deprived and shivering and not in the mood for what was to come. Four nurses took another hour to get me up, hoisted to the commode, discovered (I already knew this but it was a revelation to the nurses) that I cannot balance on a commode, and finally transferred to my wheelchair. I'll spare you the details of the indignity of the saga of getting my trousers on. Suffice to say that in the end we did it my way.

Later we got to the heart of the reason I was there. Steve, the ventilator man, came to experiment on me. The problem, it appeared, was that the pressurised air was leaking, thus I was not getting the full benefit of the BiPap and also that the alarm was going off to alert me to this fact. The solution was a new mask. Steve was very excited, he had a radical new product to try. “It's a bit unusual,” he warned me. It was. Imagine a diving helmet crossed with a bin-liner held on to your head by padded straps that pass under your armpits to stop it blowing off. When I tried it, sitting in my wheelchair, it was an interesting experience, rather like being in your own person bubble (albeit a noisy one). Polly said I looked like Sandy the squirrel from Sponge Bob Squarepants. The problem started when they wanted me to try it lying down. When Steve came to fit it, with me balancing on the bed, I freaked out. The bubble became that plastic bag your mother told you not to put over your head when you were a child. I couldn't breathe, which considering its purpose was pretty ironic.

Next we tried a mask which fitted into my mouth like a scuba divers breathing apparatus. This time the problem was that if you tried to speak or swallow the air was blasted under pressure into your stomach which blew up like a balloon. I lasted about 15 seconds.

Finally Steve produced a variation of the nasal mask I already use. Bingo. I agreed to give this one a go that night. I was told a sleep study had been arranged for Saturday night to assess how effective the mask was going to be. The thought of another 3 nights of mobile hoists and commodes was too much. I begged Steve to bump me up the list and he surveyed my room and took mercy on me. He said he would slip me onto the end of the list for that nights tests.

Getting to bed that night was a debacle.. The nurses were brilliant but I was exhausted and nothing went quite right. It seemed to take hours and I was at the point of taking out a contract on the life of whoever designed the mobile hoist I was being swung around on like a human conker. When, eventually, I was lying in approximately the right position, a technician came in and attached a probe to my earlobe. At least someone had come and mended the radiator and I only needed four blankets. The new mask worked beautifully though and the BiPap alarm didn't go off once.

In the morning two nurses came to get me up. Half an hour later they went to get two more. Much much later the consultant came in with the results of the sleep test. (You know you are getting old when even the senior consultants look like they are fresh out of school.) I held my breath (so to speak) as he held up a print out and pointed to various lines tracing across the page. O2 saturation was at 100% all night. More significantly my CO2 levels remained consistently low throughout. “This,“ said the consultant, “is about as good as it gets. Excellent. You should begin to feel the effects over the next few days.” And with that I was released back into the wild.

When Polly had come to visit me the previous day she had stopped in the corridor to stare briefly at one of the other patients. When she came into my room she said, “Isn't that. . . You know. . . Oh, thingumajig from that show. 1970s. . . American. Very famous.” I peeked out of my room and, do you know what, she was right. It was thingamy from that cop show. He was in a private room and got to drink coffee from a cafetiere rather than the instant muck I was served. From then on I couldn't get that gooey song he sang out of my head.

I'm home now and have just had a good nights sleep. The BiPap alarm didn't go off once. Result.

Until next time. . .

In Limbo

Theoretically I'm off to the Brompton tomorrow but I won't hold my breath (they get really mad if you do that). I'll keep you informed of my progress or lack of it. Meanwhile I'm in a kind of limbo. Ho hum.

Bumped

Apologies for the lack of posts over the last week or so. What can I say? It's January. It's cold, grey and generally miserable. If there was any justice in the world I would be in Mauritius.

I am not, incidentally, in hospital. I was due to go in to the Royal Brompton on Tuesday so they could fiddle around with my BiPap settings and play with my mask in an attempt to sort out my CO2 levels. However I was bumped from my rightful bed by some sick person who was deemed to be in greater need than me. I was all psyched up and ready to go, ebooks downloaded and iPod charged, when the bed manager rang to say don't come.

Polly had to cancel her 'girls night' and we are both resigned to another couple of weeks of disturbed sleep with the BiPap alarm going off on average 17 times a night. It is worse for Polly because the high-pitched alarm doesn't always wake me but it does her. She has taken to kicking me in the back so we can share the experience. The sooner we can get it all sorted the sooner my bruises will heal.

I'll keep you updated.

Still Ticking Along

Yesterday I made the trip to Kings Hospital for the specialist FSH clinic with Dr Rose and his team. Once we had negotiated the near impossible task of parking within seven miles of the main entrance and then found our way through the maze of corridors to the Therapy Suite we were greeted by an enthusiastic volunteer who presented us with a pile of questionnaires designed to reveal my innermost concerns regarding my condition. No sooner had I started answering questions about my sleep patterns than we were whisked off to the cardiac clinic for an ECG.

The woman who performed the ECG was one of those people who wants to tell you all about someone they know who is in a wheelchair. In this case we were regaled with the tale of her nephew who had been run over by a drunken vet in Ireland, paralysed and then mugged by four Polish men in an alleyway in Dublin of his Christmas bonus. I think the subtext was that I'm lucky to only have Muscular Dystrophy.

A little later we squeezed in to a consulting room with Jo, the physiotherapist, Chris, a post-doctorate researcher studying MD, and Dr Rose himself. The purpose of the consultation was to review progress since the last one six months a go and to anticipate what was going to be required in the future. Everyone admired the super-duper wheelchair which they had been instrumental in getting funding authorised for and bemoaned the lack of progress regarding our housing situation. We discussed various problems I've been having with my hands and everyone looked at my toe. I was rather alarmed by their reaction to it. Words like 'tissue viability' were used. I was firmly told to get my GP to look at it.

Various technological ideas were mooted to help with my increasing difficulties with communication and I'm being referred to the appropriate specialists.

On our journey home I found myself in reflective mood. These sessions are of immense value but they force you to confront the reality of the situation. My condition is degenerative and, in reality, this means I am forever playing catch up with myself, compensating for physical abilities lost forever. I am not a particularly 'head-in-the-sand' type person but sometimes anticipating the future is difficult. Sometimes it makes me want to pick a fight with four Polish men in an alleyway. Mostly though it focuses my attention on what needs to be done so that my quality of life remains as spectacularly high as it is. I'm not exactly looking forward to some aspects of what is to come but, all things considered, I'd rather know and be prepared than be caught by surprise and left wallowing. You can't anticipate every change but some are inevitable and, as such, forewarned is forearmed. I'll drip feed you the details as and when they occur.

I'm mentally preparing myself for what I hope will be a very brief stay at the Royal Brompton Hospital next week while Dr Simonds and her team try to get a handle on my blood gases by fiddling with the BiPap overnight. My beloved is so distraught at the thought of my absence that she has arranged for a 'girls night in' with a whole coterie of friends to help her cope emotionally.

If I can get a Wi-Fi signal in my ward I'll blog you from there. Until then, thank you for reading.

Take It On The Chin Strap

Now the gods of medicine mock me.

On Tuesday I made my way, with Polly, to the Royal Brompton Hospital for a routine check-up. Once again I sat in a corridor and waited for people to take blood from my ear and perform arcane analysis of it. And then we waited some more. Eventually a doctor wandered down the corridor clutching a large folder of notes and summoned me to a consulting room. (Actually a corner of a ward.) He glanced at the slip of paper with the blood gas analysis on it and frowned. “Your CO2 levels are a little higher than we'd like,“ he said.

Because the alarm on the Nippy ST ventilator kept going off two or three hundred times a night we changed to the Harmony which is blissfully alarmless. Unfortunately the Harmony can not generate sufficient pressure to clear the build up of Carbon Dioxide in my body even when working at its highest settings. I need the raw power of the Nippy. The choice I am presented with is slow death by CO2 poisoning or a quick death from Polly when she cracks from the strain of lack of sleep due to the Nippy's alarm. Neither prospect appeals. The doctor decided that the best thing to do was to admit me for a few days in January and experiment with a range of machines and masks whilst I am being carefully monitored. Okay, but in the meantime...?

The Nippy's alarm goes off because the pressure drops when I enter deep sleep and my weakened facial muscles relax. The idiot machine thinks there is a leak in the system; which there is; me. The solution? Seal the leak. How? Use a chin strap. (Note to Blake – Okay clever clogs, you were right back in September.)

At this point the gods of medicine start to giggle. Using a BiPap ventilator mask already makes me look like an ill-prepared Scuba diver. Now, with the chin strap, I look like an ill-prepared Scuba diver with comedy toothache. Or worse, a Victorian corpse. The white strap wraps around my head making me look like Jacob Marley on his way to the Great Barrier Reef. If you struggled very very hard you would fail to come up with a less dignified look.

Until next time, if I survive the humiliation.

The Blue Box

I am feeling so much better that I am beginning to wonder what all all the fuss was about. My temperature is down to normal and the infection seems to have gone. There is some residual gunk and coughing but it is as nothing compared to last week. It will take another week or so before I'm back to what passes as normal for me but I can live with that.

I would certainly have ended up on a respiratory ward at St Helier or the Brompton Hospital had it not been for one particular piece of kit. At times of crisis our home can resemble a reasonably equipped emergency facility what a BiPap ventilator, a nebuliser, ceiling hoists, profiling bed, air mattress, Oxygen, a drugs cabinet with a significant street value, and a blue box the size of a large bread-bin, known in our home as 'the cough machine', but more technically, by my consultant at least, as a Cough Assist Mechanical Insufflator-Exsufflator.

The Cough Assist Mechanical Insufflator-Exsufflator is a genuinely life saving bit of tech. Without it I would either be dead or on permanent ventilation. The machine works by clearing secretions by gradually applying a positive pressure to the airways and then rapidly switching to negative pressure. Apparently the rapid shift in pressure produces a high expiratory flow, simulating a natural cough. The reality is more akin to having someone Dyson your lungs on full power. The effect is unsettling and uncomfortable but infinitely preferable to hours of ineffectual hacking coughs that simply exhaust you, or, sessions of chest pounding physiotherapy that induce near psychopathic hatred of the person pummelling you.

Way back in 2000 I was very ill with Pneumonia resulting as a complication from Pancreatitis. I was in intensive care and high dependency wards for months and for most of the time had a tracheotomy. A tracheotomy, for those unfamiliar with the procedure, is where someone, preferably a doctor, makes a hole in your neck and feeds a tube into your lungs for air to be drawn through, or, as in my case, for someone to stick a suction tube in and vacuum your lungs for gunk. Having a nervous F2 wielding a scalpel at your throat while you are passing out from lack of Oxygen rates pretty low on my list of things to do again. The advantage of the cough machine is that it is totally non-invasive. It removes secretions without the need for someone sticking a plastic straw through an unnatural orifice in your neck. I'm not sure how much such machines cost but they must be cheaper than spending days, weeks or months in hospital.

Even today, when I am feeling so much better, I have already used the blue machine twice. Once again I am grateful to be living in a country with a national health service that provides such equipment free at the point of need.

In the light of all above, it might seem churlish to moan about another freely provided piece of absolutely necessary kit, but this morning, just at a critical juncture in the preparation for a shower, my new multi-thousand pound, state-of-the-art, rinky-dink wheelchair stopped working. The control panel LCD screen simply states there is a system error and the thing refuses to budge. Fortunately, the ever unreliable Serco, have failed to collect my old wheelchair and so I am back in that until an engineer with a degree in computer science can get here tomorrow. I have had the new chair ten days, most of those I've been too ill to do anything other than sit, so I doubt the problem is overuse. Mind you, I wouldn't put it past Matty to have reprogrammed it to play Marvel Ultimate Alliance 2.

Until next time.

Not Just A Chair

Oh the dilemma.

If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.

The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.

However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.

To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.

So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .

They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.

I'll keep you informed.

The Blue Badge And A Grape

Yesterday I had an appointment with speech and physical therapists at King's Hospital. The appointment was at midday and we set out in good time and arrived within 100 metres with several minutes to spare. Then we tried to park. We circled the area several times. All the disabled parking bays were taken, of course. Predatory parking wardens lurked on every corner. Eventually we pulled into a permit holders only parking bay and hailed the parking warden who had materialised within seconds brandishing his electronic ticket issuing gadget. He asked us if we had a valid blue badge and we pointed at our fully legal, non-counterfeit, in date and valid badge which he inspected through the windscreen with the kind of intensity usually only seen from antiquarian book dealers validating a Shakespearean first folio, before nodding and saying we could park in that space. Relieved, and five minutes late, we rushed into the hospital and found where our clinic was within the maze of corridors.

It is many years since I've seen a speech therapist and spent time reciting carefully annunciated 'Peter Piper picked a peck of pickled pepper' and 'She sells seashells on the seashore' type rhymes so I wasn't sure what to expect. As it turned out she wasn't interested in my 'Round the rugged rock the ragged rascal ran' but with how I was managing with eating and drinking. She timed me drinking a glass of water and studied me intently as I ate a biscuit and a grape, holding my throat as I swallowed. I've never been so self-conscious eating in my life. The reason for this attention was to check that I wasn't choking or, as my granny used to say, make sure the food wasn't going down the wrong way. I was all set for a fight if she recommended that I only eat mashed up or liquidised food but instead she only suggested keeping my head tilted forward when I swallow to keep my trachea closed off. It should help stop me getting so bubbly in the chest of an evening.

The physiotherapist was full of helpful ideas about who to talk to about various issues. A raft of letters are being written on my behalf. I might even get some new shoes. I'm told they will be comfortable but God knows what they'll look like. I'll only wear them if they are made in a Chinese sweatshop like everybody else's.

After the session Polly and I grabbed a sandwich and a coffee because the grape and biscuit combo wasn't quite sufficient for lunch, and besides, no one had offered Polly anything. Afterwards we made our way back to the car, on the windscreen of which was a bright yellow bag containing a £60 parking ticket. In the distance, a parking warden was vanishing around a corner. The smell of brimstone lingered in the air.

A Rose By Any Other Name

The problem with going to a hospital you have never been to before is knowing how long it is going to take to get there, park and find the right clinic among the maze of corridors and waiting areas. For this reason we arrived for my appointment with a consultant neurologist at King's hospital muscle clinic fully an hour early. Polly and myself, with the boys in tow, settled down in the on-site café to kill time drinking coffee and playing Mario on Nintendo DS's.

My heart sank as sometime later we found the waiting area for the clinic packed with people and with a red L.E.D. sign flashing a message apologising for the delay. My appointment was for 11.30am but judging by the number of people waiting I'd be lucky to be seen before lunchtime. However, just as I was settling down to my book, and bang on 11.30, a doctor appeared and called my name, beckoning us all to follow him in to a consulting room.

Dr Rose had black thinning hair, a dark suit and a hearing aid. The hearing aid is significant because Dr Rose lip reads. Trying to lip read someone with Facioscapulohumeral Muscular Dystrophy presents a degree of difficulty for even the most accomplished reader of lips. Fortunately Polly was there to translate/interpret for him and the consultation proceeded smoothly. Dr Rose heads up a team of specialists in muscle conditions, including physio and speech therapists and a palliative care expert. Happily I will now have access to these people.

Often, in the past, I've been seen by consultants who have looked at me as something of a curiosity because of the relative rarity of my condition. It was a relief to see a doctor who is thoroughly versed in the ins and outs of FSH MD. In addition he has promised to wholeheartedly support our application to be rehoused and find funding for the robotic arm device. I have a follow up appointment with Dr Rose in 3 months time to see how I've got on with his team.

Tomorrow we have a meeting with the district nurse. Let's hope we make the same kind of progress.

Drowning At The Dentist

You learn something new everyday. Today I learned that you can drown at the dentist.

My dentist is one of those rare creatures, an NSH dentist. He is based in the grounds of a now eerily deserted hospital that is slowly being converted to 'luxury' family homes. Once a bustling mix of health and community service buildings, residential homes, wards, mental health facilities, nurseries and all manner of disparate NHS bits and bobs, set in several acres of tree dotted green fields, the site is now littered with sealed up buildings and groups of yellow helmeted surveyors measuring up the space for development. Here and there the odd service survives; the wheelchair service occupies a building and my dentist another. The dental surgery was once part of a complex that included a GP surgery and a physiotherapy department, but they have been relocated and so the dentist and his assistant occupy a huge building all by themselves. This will be my last visit to the site before the practice moves to another location and the echoing building is razed to the ground to make way for 2 or 3 bedroom executive residences.

When I arrived the waiting room was empty so I was denied the chance to read three year old magazines and was instead ushered straight in. I positioned myself adjacent to the dentist's chair and tilted my wheelchair back. The dentist, an Asian gentleman with reassuringly spectacular white teeth, positioned the light and said, “let's have a look.” A few minutes of probing later and he declared that all was well apart from a little tartar that he would now remove.

Armed with the dental equivalent of a pressure hose he proceeded to blast the offending calculus from my teeth while his assistant wielded a mini vacuum cleaner to suck away the debris and excess water. And therein lay the problem. Suck as she might, water trickled to the back of my throat as I lay back in my chair. Whereas normally I would have swallowed the excess water I found that in my prone position I couldn't. And when I breathed I found that I was breathing in the water. Not wanting to make a fuss I endured this for as long as I could, before having a coughing fit and shaking the various implements from my overflowing mouth.

We tried again but it was no good. Each time I ended up coughing and gagging on water, being looked down upon by an anxious dentist. Eventually we resorted to old fashioned scraping. Slightly more painful but better than drowning. Less embarrassing too.

Crabby

Oh I'm a moany old git today. I had an appointment at the Royal Brompton Hospital this afternoon, the result of reaching near breaking point a while ago. (See - A Series Of Unfortunate Events) The good Dr Toosy wisely decided to have my current medical situation assessed by the mighty minds of the Brompton and (early next year) some one at Kings. So, today, Polly, Matty (off school with what Sam had last week) and I ground our way through the London traffic, waving at snails as they whizzed by, to Kensington. Parking in the area around the hospital is virtually non-existent, with about 9 disabled parking spaces to share between both of the hospitals main buildings. We found one of the precious bays unoccupied for a nano-second and nipped in, no doubt causing some one with an iffy leg to have to pay at one of mortgage requiring 'normal' parking spaces.

On the way up Matty had been asking about our astrological birth signs. I'd given my stock response, “I'm Pyrex and your mother's Caesarean,” but Polly admitted to being Libra and told him I was Cancer.” “The crab?” “There's no one crabbier,” remarked Polly. Then warming to her theme, “he's so crabby he moves sideways.” The reason Matty was asking about this nonsense was not because we were encouraging his enquiring mind to explore new age mysticism but because it had been mentioned on The Sarah Jane Adventures, a spin-off of Matty's beloved Dr Who.

Anyway. . .

We waited on Lind, a corridor on the top floor, for a doctor to see us. The clinic is always busy, full of people who for the most part make me look like an Olympic athlete. (Mind you, they probably look at me and wouldn't fancy my chances in the 110 metres hurdles.) Eventually, after blood had been taken from my ear-lobe and tested for various gasses, we got to see Consultant Dr Michael Polkey, who is, as all the staff are, very nice. Apparently my blood gasses are fine. . . and that's it really. There is not a lot more they can do. They did, very kindly, offer to take me in for the odd weekend if I need a break. And he was very sympathetic and supportive, prepared to write as many letters as we need writing to any one who we think might be able to help. The trouble is, I can't think of anyone for him to write to. Does anyone know the address of good stem-cell researcher?

The journey home made the journey there feel like Lewis Hamilton's qualifying lap at Monte Carlo. Tortoises and three-toed sloth rush passed us as we crawled home to pick up Sam from where he was being looked after. So, there goes another afternoon of my life I won't get back. Bah humbug.

Is There A Clown Doctor In The House?

A few months a go we were watching one of those regional programmes that are usually about cleaning up the local canal or restoring an old theatre or such like. This one was about a group of people who go in to hospitals to visit children and help them come to terms with their conditions, or help explain the procedures they will be going through. They are known as Clown Doctors and use humour, magic and sometimes just plain silliness to to help relax and comfort the children. It turned out these Clown Doctors weren't just a bunch of annoying would be children's entertainers in wigs and red noses but were trained in all manner of things from psychology and infection control to close-up magic and balloon modelling. Personally the idea of someone coming up to my sick bed and asking me to 'pick a card, any card' would make me reach for the pain relief, but I'm not four years old and facing months of chemo.

I turned to remark to Polly something facile about rather having morphine than laughter as my preferred best medicine when I noticed a smile on her face and a far away look in her eyes. “I could do that,” she said. And truth be told I knew she could.

A few weeks later, after an exchange of phone calls and emails, an application form arrived. I say application form but I mean a demand for an autobiography combined with a dissertation on the philosophy of child care. I swear it would be easier for an ex-junkie, militant communist to join MI5 than for a experienced children's entertainer and nursery nurse to become a clown doctor. I know I'm biased but with more than 15 years experience as a story-teller, professional qualifications and real life experience as a nursery nurse both here and abroad, and years of earning a living as a jobbing actor (playing countless parts as cute woodland animals and fairytale creatures) there is no one in the whole country more qualified than Polly for a job like this. She spent hours and hours filling in the form and then dropped in the post.

As you might imagine, following the TV programme, the Clown Doctor people had been swamped with requests for application forms from would be balloon modellers and wig wearing circus wanna-bees. In the end some 375 people actually made it through the form filling and of those a handful were invited to a workshop. Polly was among them. After a morning of finding her inner clown and evolving from the primeval swamp into a dinosaur she was called back for an interview which is where we were up to today.

This morning Polly made her way back to Angel Islington for the interview. There were only six trainee places vacant so I did the “You've done really well to get this far” speech. Later, I received a phone call from her telling me how she had gone mad and been unable to stop talking. “I was surreal even by my standards,” she groaned, “At one stage I was telling them about ready rolled pastry already cut in to circles.” “Why?” I asked. “I don't know,” she wailed. “But after it was over one of the panel asked me where she could get some. Is that a good sign?”

Apparently it was. This afternoon they rang to give her the job though whether for her acting and entertainment skills than for her particular knowledge of frozen patisserie we'll probably never know. Next month she starts a process of training that will last two years. That's an awful lot balloon animals.

Bevan's Baby At 60

This week the NHS is 60 years old. I know it is a popular pastime to moan about the ever beleaguered institution and to prophesise its imminent demise but it truly is a wonderful thing. Just think about it, free health care from the cradle to the grave. Yes, I know we pay for it with our taxes but it is free at source when you most need it, whether that be after evening of binge drinking, drilling through your hand whilst doing DIY, or contracting a life threatening disease. Or, like me, have a congenital condition of the kind that makes insurance companies reach for the 'Sorry Closed' sign and avoid eye-contact with you. But how good is it? This good.

Yesterday morning, on the hottest day of the year so far, Polly and I got into our non air-conditioned van and drove in to London for me to attend the Lind clinic at the Royal Brompton Hospital as I do about once every six months. The Brompton is a hospital with a world-wide reputation as a centre of excellence for treating heart and lung disease and is a place I have been attending for the last eight years when I was first hurtled there in an ambulance with lights flashing and siren blaring after failing to recover from double pneumonia and escape from my local hospital's intensive care unit after 3 months. The lung wing of the hospital is based in a Victorian building and Lind ward is on the top floor. The waiting area is a long corridor packed with wheelchairs and people attached to portable ventilators and oxygen tanks. It's one of the few times I look at a group of people and think 'Cor, look all those cripples. I'm really fit.'

After a while someone cuts my earlobe with a razor blade and takes blood with which to analyse my gasses from. They check my BiPap machine settings and then it's back to the increasingly hot and crowded corridor where I slalom my way back through the wheelchairs, walking frames and oxygen tanks. We wait a little longer and then are invited in to a consultation room where I am seen by a doctor. We've met before and he is familiar with my condition. My blood gasses are just about okay but the time has come for me to use the ventilator for an hour or so during the afternoon to rid myself of excess CO2. Deep joy.

I hate using the BiPap during the day. I'm not that keen on it at night but when it broke down a few months ago I discovered what it was like to go without it. I'd spent the following day in a miserable fog of Carbon Dioxide infused headaches. So, love it or hate it, I'm stuck with it. Life with out it would be. . . well, short. The trouble with using it during the day is that it ties you down. You are connected to the machine via a mask and hose and the machine is connected to the mains via. a cable and plug socket. So you are stuck in one place for at least an hour. And they want me to do this every day. Now this is where it gets good.

They asked me what I needed.

I told them I needed a face mask that was suitable for use during the day. The mask I have been using is a small nasal mask which I fancy makes me look like a WWII fighter pilot, but in reality makes me look like a demented scuba diver. It is fine for sleeping with but if you move around it leaks and cold air under pressure is blown in to your eye. It also has a tendency to whistle tunelessly in time with my breathing. I also wanted a way to move around and if possible get outside, more than a few feet from a power socket, so did my BiPap have an internal battery? No. Go and see Steve said the doctor.

Steve is the ventilator man. Steve knows more about BiPaps, Cpaps and all things ventilatory than any one in the south of England. So, while Polly went to book my next appointment I took the lift downstairs to the sleep labs, where Steve hangs out. He greeted me in his usual friendly manner and after listening for a minute vanished in to a store room to reappear with a couple of items. The first was a new type of face mask that plugs directly into my nostrils and is so sophisticated it comes with its own CD-Rom and carrying case. The second item was a battery the size of a small paperback book. Steve apologised that it didn't come with a case but the company that supplied the battery changed extra for them. He reckoned that if you paid £500 (that's $997 or €631) for a battery you should get a protective cover thrown in.. He showed me how to connect it to the Bipap and then stuck a 'Property of The Royal Brompton Hospital' sticker on it and that was that. I wheeled away with both the things I needed to make using the ventilator during the day practical and comfortable. There were no quibbles, no money handed over, I didn't even sign anything. They just gave me the equipment for as long I need it. How good is the NHS? That's how good.

Happy Birthday!

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.

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