Monday, 4 October 2010

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.

Tuesday, 28 September 2010

Return Of The Blogger

I'm back.

Thank you for your patience. It's been a long, and for the most part pleasant, summer and I feel I owe an explanation for my absence from the blogosphere for it's entirety. Way too much has happened for me to cover in one post but I'll give a brief summary here and expand on details as time and my typing allow.

I left you back in June because the long decline in my dexterity finally reached a kind of tipping point and my typing became so unreliable, erratic and difficult to perform that anything otter than essential email communication became all but impossible. I have not yet found a satisfactory remedy for this but I have purchased an iPad which, with it's superior touchscreen keyboard, helps a little. It then took more time to find a suitable, but hugely expensive, stylus with which to poke at it with because my fingers are no longer up to the job. I missed blogging but the longer I left it the more things kept happening and less I felt able to catch up. Consider this post a kind of bull being taken my the horns sort of thing. I'm getting back in the saddle and mixing metaphors once more.

You may remember that long ago we started the long process of being rehoused which resulted in a slightly surreal meeting with, and letter from our MP, Tom Brake. (See Cometh The Man back in March.) Well the wheels ground awful slow but we were at last notified of a new development being built that includes wheelchair accessible accommodation complete with through lifts to move users up and down between floors. We were told, unofficially, that we were 'pencilled in' for one of these desirable properties. For weeks and then months we drove past the development and watched the walls going up and the roof being tiled. At least one extra bedroom was on offer as well as an extra bathroom and more space generally. All ideal. A few weeks ago an Occupational Therapist arrived to discuss our specific needs; hoists, bathroom adaptations and the like. He took notes, measured the wheelchair and then disappeared back to OT Land. Days passed. Then we received a phone call from him to say that lift that was being installed was too small to take my wheelchair. The lift shaft had been built into the fabric of the house and it was too late to change it. We wouldn't be moving after all.

We contacted Tom Brake again and stiff letters are being written but in the current climate of cuts it seems unlikely that new housing will get built in the foreseeable future. It seems a pity that no one thought to wonder what kind of wheelchairs might or might not fit in the house before they built them. I suppose they didn't want to waste precious space.

I will call it a day for now. Next time I'll tell you how I went yellow in August and ended up in hospital. Thanks for reading.

Until next time. (Soon, I hope.)

Tuesday, 15 June 2010

And So To Bed

I'm writing this at 10.30pm which is well past my bedtime. Things were going so well. It had been a busy and fun weekend; we'd had the local carnival on Saturday where the boys had gone on the Ghost Train and climbed inside inflatable plastic balls to roll around a huge paddling pool. We'd watched reluctant birds of prey take part in a falconry display like sulky teenagers begrudgingly performing their party piece at the increasingly irate behest of their parent. We'd watched marching bands and cheerleaders put on displays helped and hindered by an intermittent fault on the PA. All jolly good fun. On Sunday the boys and I watched Polly run a 10k race around and around our local park which took up 65 minutes and 31 seconds of a sunny morning. The race was billed as a fun run which conjures up images of people dressed as Buzz Lightyear jogging alongside groups of firemen chained together waving buckets to collect coins for kittens stuck up trees. Forget that. This turned out to be an excuse for the local running club to put themselves through their paces under race conditions. There was a lot of Lycra on display. The male winner whizzed home in just 31 minutes and 39 seconds. Polly came in a very respectable mere 15 minutes after the fastest female.

Now the reason I tell you all this so past my bedtime is because I am awaiting an engineer to come and repair the hoist in the bedroom. The carers had come as usual to lay me down to rest and we were at the final stage of hoisting me from the wheelchair into the bed. The hoist, after some coaxing, lifted me airborne and over to the bed. What it would not do was to lower me down on to the aforementioned bed. I was left hovering like a fatigued Thunderbirds puppet two feet above my mattress. No amount of button pressing had any effect. The emergency release cord had mysteriously disappeared so I had no alternative but to dangle helplessly while Polly and the carers tried turning the power on and off and swinging me around a bit in an attempt to unstick whatever was stuck. After a few minutes I was beginning to feel distinctly uncomfortable, scrunched up in the sling as if I was a particularly large and unappealing fisherman's catch of the day.

Eventually, just at the point where I was considering having the straps of the sling cut through so as to allow me to tumble down on to the bed with a hope that the resulting dislocation of joints wouldn't be too painful, I had a brainwave. My super-duper wheelchair is capable of raising up several feet in the air. By carefully moving the hoist and therefore myself over the chair and by me performing a kind of wriggling contortionist act as the carers eased the sling off around me I would only need to fall inches. With a defiance of health and safety and with a bodily dexterity that would surely have earned me a place in the semi-finals of Britain's Got Talent I fell gracefully in to my risen wheelchair seat. Meanwhile Polly rang the emergency engineer.

The next day. . .

Well, the engineer came at 11.00pm, cheerfully declaring that he had had one foot in the bath when his supervisor rang. Apparently a previous engineer had fitted the strap back to front causing the whole kit and caboodle to get tangled up. It took him 20 minutes to undo the mess. It took Polly a further 20 minutes to transfer me to bed on her own, the carers having long since departed.

At least the emergency engineer turned up quickly and fixed the problem efficiently and without a fuss, unlike another company who have a contract to maintain my wheelchair. More details forthwith.

Until next time.

Thursday, 10 June 2010

Watch The Birdie

Once again Polly and I dragged ourselves over the speed-bump strewn roads of South London for me to attend the Lind clinic at the Royal Brompton Hospital. Once there, and having located one of the rare and obscenely expensive parking spaces, Polly vanished to have coffee with a clown doctor friend who lives conveniently nearby, pointing out that she hadn't taken a day off from working in a hospital to spend it sitting in another hospital, especially as she wasn't being paid. I sat reading and patiently went through the whole blood-letting experience so my blood gases could be analysed. Sometime later I was seen by a stereotypically efficient German doctor who informed me that my CO2 levels had fallen satisfactorily and that they won't need to see me again for a whole year. Polly reappeared and we stop-started our way back through the London rush hour just in time to take Sam to his first ever Beavers meeting.

I am, of course, delighted that all that faffing about in March when I had to stay at the RBH has paid off and that the changes of masks and BiPap settings have achieved what they set out to do, namely make me feel better. It is a slightly unsettling experience to be in a position where at least one aspect of my condition is improving rather than spiralling ever downwards. It is my ambition to confound all those health professionals who anticipate the worse. Viva Stephen!

On a completely different subject altogether, Polly, as you may remember if you have been paying attention, has spent months renovating my sisters house in Surrey while my sister runs what's left of the global oil industry. The house is still looking for a tenant and has a couple of agencies squabbling over who should manage the property. Last week we got a phone call from one of them to say that a bird had flown down the chimney and expired in the living room. “It's made a bit of a mess, “ they said. Sighing, Polly made her way to the house armed with some cleaning equipment to discover just how much mess a trapped magpie can make. It turns out that it makes a lot. She phoned me to say that the house looked like a scene from CSI Surrey. “What should I do with the. . . er. . . body?” she asked. I suggested she put it in a plastic bag. It was only on the way home that Polly realised the irony. She'd interred the magpie in a Sainbury's Bag for Life.

Until next time.

Tuesday, 1 June 2010

The Whole Tooth

It is half term already and it seems as if the boys have hardly been at school since Easter what with in-service training days, bank holidays and elections. To compensate for the lack of orthodox education we have enrolled the boys in a couple of courses at a local theatre. Today Matty learned to be a stuntman taught by someone who worked on Sherlock Holmes. He came home confidant in his ability to be zapped by Harry Potter or to burst through a wall made of foam blocks. Tomorrow Sam is going to learn African drumming which given his complete lack of rhythm when playing Lego Rockstar on the PS3 might present his teacher with a bit of a problem. Sam has discovered that by hitting any random drum in any random order very very fast can get him a higher score than his equally tuneless brother.

I celebrated half term with a visit to a rather jolly dentist who poked and prodded and declared all well except for a dodgy wisdom tooth which needs x-raying with a view to having something done to it. I have to go back in a couple of weeks. Next time though it will be without Sam being an aeroplane around the surgery.

Right, I'm off to watch dancing dogs on Britain's Got Talent.

Friday, 21 May 2010

Say It Loud

I am fully recovered from my visit to planet Noro I am pleased to say. Thank you for all the messages of sympathy and I'm sorry if you have suffered similarly.

Yesterday Nina, the speech and communication specialist, came for another visit. During our conversation last week I had mentioned that I often have difficulty making myself heard in noisy environments because I am unable to project my voice loudly enough. Nina was excited because she had a solution to this problem and this week she had brought with her a plastic case containing a voice amplifier. The device was about the size of an old fashioned Sony Walkman and came with a transdermal (throat) microphone. The EchoVoice has a built in speaker, an on/off switch and a volume control and that's pretty much it. The idea is that you can speak at a low volume and the device amplifies the voice through the speaker. Simple.

Unfortunately not only is the device the size of a Sony Walkman it also looks like it was designed by Amstrad and built in the 1980s being made primarily of beige plastic and with a speaker that wouldn't have been out of place in a transistor radio. As soon as I turned the volume up to a useful level my voice distorted as if it were being fed through a guitar fuzz box. It would be perfect if I wanted to announce the 2.37 from Paddington and not want anyone to understand but not so good for a chat in the school playground. Nina, who had tested the EchoVoice in her office, was disappointed by the reality in the field. I sounded like a rather breathy Dalek. Unfortunately not a very loud one.

Nina left to see if she would have more luck finding something to speed up my typing. I'll let you know how we get on.

Until next time...

Wednesday, 12 May 2010

Sick And Tired

If you are unfamiliar with the term Norovirus you are exceedingly fortunate. I mention this because I am now on more than nodding terms with the little packets of DNA and RNA wrapped in protein. The last few days have not been particularly pleasant. I admit that I am self-diagnosing here, and I may be infected with a distant cousin of Noro but since my carers inform me that another of their clients has had the virus I think I'm justified at pointing the finger at the micro-parcel of misery.

Sickness and wheelchairs are not an ideal combination in anyone's book. I'm fortunate that I've had only a relatively mild case but it has still been distinctly grim. I'm over the worse but still feel a little delicate.

Today I had a visit from a Speech and Communications specialist called Nina who came to assess me. You will be surprised to hear that I do, in fact, have the ability to communicate but Nina plans to help me do it better. She is looking into technology that might help speed up my typing and also a system that could help me communicate in noisy environments. We will be meeting again next week. I will, of course, let you know how it goes.

Until next time.

Sunday, 9 May 2010

Birthday Boy and Quiz Night

Saturday was Sam's sixth birthday. We have been counting down to the day for months. It is beyond my abilities as a writer to communicate just how vibratingly excited my second born has been in anticipation of the day. His maths has improved no end as he's mastered subtraction and the day has been built up in his mind to a day of birthday perfection. No pressure then. At six o'clock am precisely our bedroom door flew open and our newly minted six-year-old burst in followed seconds later by a slightly blurry-eyed older brother.

Amidst the mass of wrapping paper covered presents was a blue camera from his great aunt Megan. From then on it was like being in bed with a Paparazzi, a blinding flash going off time and time again. Fortunately he was eventually distracted by a game for the Wii which required a retreat to the living room, although every step of the way was photographed and recorded for prosperity. All the time he was clutching a yellow furry thing called a Puffle which Matty had given him.

Later that morning we found ourselves at Kidspace in Croyden, one of those indoor maze of climbing, rope, plastic and tunnels in garish colours that children vanish into to scream and chase and perform death-defying slides in foam encased safety. Eight of Sam's friends, plus Matty were in attendance for this much anticipated party. We had booked the party months ago and all we had to do was turn up with some children and a cake. The cake, Sam had specified, was to be in the form of a caterpillar with each segment a different colour and with each child's name written upon it. The staff at Kidspace were taking care of the rest, including the food, in the exclusive birthday party orientated Orange Pod. You will be unsurprised to know that I managed to find a table and a cup of coffee to retreat to.

That evening we left the happily exhausted birthday boy in the loving care of Pam, his grandmother, and attended a quiz night at the school. As previously mentioned in these pages, I love quizzes and become insufferably competitive when partaking in one. For years I have competed in the school quiz and for years my team has come second. This year, unlike last, I was not suffering Oxygen deprivation and a lifetime of accumulated trivia came to the fore. Yes I knew what Dane Godtfred Kirk Christiansen gave the world in 1958. Where was the Magna Carta signed? Easy. Ha! Who was Queen Elizabeth II first prime-minister? Ask me something challenging. The chemical symbol for Potassium? Okay. Fortunately I was a member of a team who knew such things. They also knew such useful things as the number of dominoes in a set. By the time of the final round, general knowledge, it was neck and neck Which superhero's secret identity is Steve Rogers? If my facial muscles were capable of it a huge grin would has spread across my overly smug face. We had that round nailed.

The final scores were totalled up and we, by the massive margin of 1 point, had snatched victory. At last my awesome talent had been recognised. As Polly and I wandered home, our victory bottles of wine clinking together, we considered that, all in all, it had been a pretty good day.

Until next time. . .

Answers – Lego. Runnymede. Winston Churchill. K. 28. Captain America.

Wednesday, 5 May 2010

Can He Talk?

I took the boys to their trampoline lesson last Friday at our local leisure centre. The lesson is held in a vast, echoing hall with four trampolines in one corner and a couple of badminton courts scattered around. While the children await their turn for their one-to-one coaching they tend to run around the hall chasing a ball or playing tag, shrieking at a pitch that seems to resonate with the with the natural frequency of the hall and at a volume to make your ears bleed.

In the course of this running around between bouncing Matty collided with another child and I looked up from my book to see him sitting on the floor nursing his left leg. A group of children had gathered round and one of the mothers had come over to check that there was not too much damage done. I put down my book and took up my parental responsibility and wheeled across the cavernous hall towards the group. As I approached I could see that Matty was going to live and I cancelled the explanation I'd mentally started rehearsing for Polly about how my eye had never left him. The mother looked up to assure me that there was no serious damage done. Just then a little boy said loudly and clearly, “ Mum, mum, I think that man wants something.” The mother replied “ Yes, he's come to check that Matty is okay.” The boy looked puzzled. “Why would he do that? “ The mother flashed me an apologetic smile. “Because he's Matty's daddy.” “Is he? What really?” The boy looked at me with open curiosity and then checked with his mother. “Are you sure?” “Yes,” hissed his mother looking at me and mouthing “Sorry.” The boy continued to look me over. “Can he talk?” I fixed him in the eye and said firmly, “Yes, he can.” “Oh,” said the boy, “that's all right then.” He then wandered off to play. His mother, obviously wishing the polished floor would open up beneath her, could only mouth “Sorry” again.

Until next time.

Wednesday, 21 April 2010

We'e All Going To The Zoo Together

On Monday we went to London Zoo and contrary to my pessimistic expectation it didn't rain. In fact the weather was rather nice. We went with our friend C and her son, Matty's friend from school, taking advantage of the way we could all fit into our car because C's husband, an airline pilot, is currently stuck in Washington because of the Icelandic volcano.(Every volcanic aeroplane death cloud has a silver lining, apparently.)

London Zoo has changed since my youth. Gone are the elephants and Polar bears circling confined enclosures, going slowly mad. Instead the emphasis is on conservation with Gorilla Kingdoms and Rain Forest experiences. I particularly enjoyed the Night Life experience, which was not a disco but a chance to see all sorts of nocturnal creatures knocking about naturally.

I am slightly suspicious that many of the terrariums in the reptile house were empty despite signs saying they contained a Taiwanese Spitting snake, a Borneo Bouncing lizard or a Completely Invisible Sleeping newt. Occasionally I did spot a snake but it might quite easily have been a rubber one from the zoo souvenir shop. Telling me how cunningly they used camouflage didn't fool me.

Sam, having been to see the film How To Train Your Dragon was keen to see the Komodo dragons. He was disappointed to find they neither flew nor breathed fire but was slightly mollified when I told him how they could kill a buffalo. Matty found it difficult to choose a favourite animal, being torn between the giraffes and “those catty things with spots near the tigers.”

It was a good final day of the school holidays.

Until next time. . .

Sunday, 18 April 2010

The Easter Break

Okay, I admit it, I'm a bad blogger. I have failed to post anything new for what seems like an age. My excuse? It's the Easter school holidays and I have two ebullient boys to keep entertained. Oh, and it's been (mostly) sunny so I've been sitting in the garden reading and trying not to get sunburn.

Last week we went for a picnic in Greenwich park to meet up with my aunt Megan. We picked up my nephews, the boys cousins Oscar and Ollie, on the way and arrived in time for lunch. Obviously the glorious weather we had been enjoying took a break and we ate our Scotch eggs and buffet style chicken pies in a light drizzle that slowly progressed to a torrential downpour. Fortunately I had my ultra-stylish wheelchair raincoat with me which Matty says makes me look like a toddler in a pushchair. At least I was dry. We took refuge in the fabulous Royal Observatory, enjoying the historical setting and the state of the art interactive displays before watching a show in the Planetarium.

To help the boys burn off some energy we enrolled them both in an intensive trampoline course for the last week. Matty, in particular, has shown an aptitude for the sport and attained his grade 5 certificate. We have also replaced our broken tiny garden trampoline with a slightly bigger unbroken one. Even as I write Sam has just bounced off it to swing on the washing line in an attempt to create his own theme park ride. We will now need to buy a new rotary dryer.

It was also this week that our washing machine chose to break down, making horrible grinding noises and refusing to perform its raison d'etre. We emptied our piggy bank and ordered a new one. It was then that our friends Catherine and Stuart told us that they had inherited a virtually brand new washing machine and it was sitting idle in their shed and would we like it. Would we ever. Stuart even came round and plumbed it in. This saved us a small fortune and we are very grateful. Now, has anyone got a fridge/freezer?

Now as the holiday draws to a close, the boys have an inset day tomorrow so have one extra day off school. We are taking them to London zoo so you can expect it to rain.

Until next time.

Wednesday, 31 March 2010

A Mile In Their Shoes

On the 21st March Polly, Sam and Matty ran the Sports Relief Mile along the Embankment in London. It was something of a last minute affair, Polly only having signed up a couple of days before hand, so she only committed to raising £50 for the charity. They all ran the mile with ease, circumnavigating Eddie Izzard (who was running yet another full marathon), and completing it in about 10 minutes. (Polly insists they could have run it faster but there were too many baby buggies in the way.)

Thank you to everyone who sponsored the three of them, we really appreciate your kindness, generosity and support The money goes to support important projects here in the UK and in some of the poorest countries in the world. You can find out more at and if you would like to retrospectively sponsor Polly and the boys you can at . I am delighted to announce that the total raised so far by the three of them is £380. . . so far.

Until next time.

Wednesday, 24 March 2010

Laser Death Pizza Extravaganza

I have been to hell and it is in Croydon. All right, perhaps I exaggerate, but not a lot. On Saturday we had Matty's 10th birthday party which was held at the Laser Quest franchise in the Colonnades on The Purley Way. From the outside the building looks like a rather bland office block but inside it is designed to resemble a Mississippi steamboat, I kid you not. The steamboat illusion does not pass deep inspection and is soon revealed to be mostly a front for an extremely noisy amusement arcade replete with the latest shoot-'em-up games called things like Zombie Killer 4 and Death Jungle Zone 3. Each game comes with at least one machine gun and absolutely no volume control. Interspersed with the death dealing mayhem machines were driving games that gave very little consideration to the highway code called Death Racer VII or Mission Road Kill X or such like. Also dotted around the Stygian hall were several non-working pool and air-hockey tables serving primarily as surfaces for teenagers to lounge against and as anti-wheelchair obstacles. The thermostat was set to 'boil blood' level but they economised by having the lighting set at a level that required an infra-red night scope to see more than a few murky feet. Along one side of the arcade was the Laser Quest zone where groups of identical looking pre-teens loitered whilst awaiting their turn to dispense laser justice upon each other.

Matty and his micro-army of 9 laser armed friends vanished into the kill-zone to enact Armageddon while I hunted vainly for a cup of coffee. Eventually I took refuge in the party room we had reserved and was at last able to have a conversation that did not require shouting over the death throes of machine gunned zombies. After an hour or so Matty's army retired from the battlefield to devour hot-dogs and relive successful ambushes. Oh to be 10 again.

On Monday it was Matty's actual birthday and we took him (and Sam, obviously) out for tea. You put your taste-buds in the lap of the gods when you let a 10-year-old choose the restaurant you dine in, so it was with a sense of 'it could have been worse' that I trundled into Pizza Hut. I am not a huge fan of Pizza Hut so I was pleasantly surprised to find on the menu some relatively interesting looking Tuscani style pizzas. I settled on the Pollo Portobello with the “thinnest, lightest, crispiest pizza base” and “recipes inspired from the heart of Italy.” Perfecto! Unfortunately Matty had been swayed by the advertising that induced him to try a pizza surrounded by “a ring of 28 individual doughy bites bursting with cheese.“ Such a divine culinary experience only comes with pizzas the size of truck tyres and so he pleaded with me to share a vast meat-feast deep pan pizza. I closed my menu with a small sigh and said that I'd be delighted to share. It was his birthday after all and considering the years of pleasure he has given me it was a tiny sacrifice. As he sat, grinning from ear to ear, chewing on peperoni flavoured stringy bits, he thanked us for taking him out to 'a posh restaurant'. Is it any wonder I love him?

PS - Only have the ring of 28 individual doughy bites bursting with cheese if you enjoy cheesy flavoured chewing gum.

Until next time.

Monday, 15 March 2010

Spring Is Springing

I feel a little as though I am coming out of hibernation. As the weather improves and the temperature slowly climbs I have been able to get out a little more. My mother came to visit and Polly and I took her for lunch at the local garden centre (rock n roll, hey). Then at the weekend I went to collect Sam from a party and also chased the boys around the park on the their bikes. (This took a while because Sam can only ride in a straight line and crashes dramatically at the slightest curve.)

Both Polly and I are benefiting from me having the new BiPap mask. So far the alarm has not gone off once since my return from the Brompton. Getting a good nights sleep has had a reinvigorating effect; Polly has taken up running again. She has been looking through catalogues and trying to fathom which running outfit will not emphasize her bottom.

I am pleased to report that my regular carer, Kolapo, has returned to work. He is much recovered from his injured back but is not going to be working 7 days a week any more. While he has been away we have had a series of other carers visiting. One of these was a very nice man called Balham. At the end of his stint with us Polly did what she had been dreading doing all week, as Balham departed she bid him farewell and wished him a good week saying, “Goodnight, Mitcham!”

Until next time.

Saturday, 6 March 2010

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. . .

Monday, 1 March 2010

Cometh The Man

A few weeks ago we were assessed by a surveyor who came and told we have a condensation problem in out flat. We were aware of this because we had spotted the patch of black mold growing in the corner of our bedroom and behind various wardrobes. The surveyor, a nice woman, surveyed the BiPap, the electric bed, the air-mattress, the hoist, the wheelchair, the battery charger, the cough-assist machine and nebuliser, and explained that we have too much equipment in too small a space. The air, she said, could not circulate and we need more space. We are not, she said, adequately housed. Contact your MP (Member of Parliament), she advised. And, having exhausted other avenues and being very suggestible, that is exactly what we did.

To that end, last week, we were visited by Tom Brake, Liberal Democrat Member of Parliament for Carshalton and Wallington at home. He came and drank a cup of tea, declined a plate of biscuits, discussed the forthcoming general election and listened attentively while we explained the situation. We showed him a folder full of letters from medical type people saying we need more space. We presented to him two growing children. We told him of some the problems we face on a day-to-day basis. We explained how the cramped conditions made it difficult for carers to work safely and how they had to squeeze past the end of the bed to perform their duties. Tom nodded in all the right places and said that although he could make no promises he would see what he could do.

A few days later Tom sent us a letter summarizing our meeting. He asked us to grant authorisation to someone on the council to access our files and in addition to following up on our request for rehousing and, in the short term, a suitable hoist. made this rather surreal recommendation -

“allocation of carers who are small enough to squeeze into the currently very confined space.”

This is a splendid example of parliamentary lateral thinking. We don't really need larger accommodation we just need smaller people. Brilliant. It seems an odd thing to focus on but that's probably why I've never sought public office, I just don't have that capacity for problem solving.

Obviously I will keep you informed of any progress. I'll also let you know if I see any signs of carer shrinkage.

Until next time.

Monday, 22 February 2010


I had a breakdown in the bathroom early last week. It took three women to get me out of there. It all started when I was transferring from the toilet back to the wheelchair. The screen on the wheelchair controller flashed up a message informing me that there was a 'brake error 1301'. The wheelchair refused to move, ceasing to perform its primary function and becoming simply a chair. A chair located in the bathroom. The two carers and Polly manhandled the chair out of bathroom and into the living room by disengaging the motor and heaving and pushing the ungainly machine using brute force. Polly referred to the manual and looked up 'brake error 1301'. The manual helpfully told her that there was a problem with the brakes. Armed with this inciteful information Polly poked and pulled various wires and connections to no effect. Eventually she removed a panel on the back of the chair and prodded connectors hopefully. Suddenly the chair sprang back into life. The carers stood in open-mouthed appreciation of her technical abilities. Polly Deal, the 4th emergency service.

I'm having problems writing at the moment which is why these posts are a bit short and a bit spaced out. Normal service will be resumed soon, I hope. Thanks for your patience.

Monday, 15 February 2010

Still Bumped

In case you were wondering, I'm not in the Royal Bromton Hospital. I was bumped again, presumably by a very sick person whose need was deemed greater than mine. Because this week is half-term and the boys are off school I declined the offer to wait in all week on the off-chance that a bed would become available. Apparently we are going to try again in the first week of March, by which time I will be considered a priority.

Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.

Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.

My hand is hurting so I'll have to stop writing now. Until next time...

Tuesday, 9 February 2010

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.

Sunday, 31 January 2010


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.

Thursday, 21 January 2010

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.

Tuesday, 12 January 2010

Toeing The Line

There is little to write about at the moment as I am effectively snowbound. The heavens have dumped a largish amount of the white stuff upon us and rendered the local pathways wheelchair proof. Dancing On Ice could be broadcast from the Westcroft Centre car park, across which I would have to traverse if I wanted to get to the school or village. The boys had two snow days off school last week and have since been watching the weather forecasts with the same attention they usually devote to Spongebob Squarepants.

Apart from a slightly infected big toe I am well. Polly keeps looking at the toe and muttering that it is the wrong colour and doesn't match the other nine. It doesn't hurt unless someone pokes it so I haven't been particularly worried. Even so, to stop her worrying (fussing) I had one of the district nurses look at it and she put a dressing on it that makes it look like I'm wearing a finger puppet on my foot.

To add to the surreal nature of my life, this morning I ate my breakfast to the accompaniment of Polly having a Ukulele lesson and strumming 'She'll Be Coming Round The Mountain' in the chord of C. Her tutor has gone away to learn how to play 'The Wheels On The Bus' so he can teach her next week.

That's it for now. Until next time.

Wednesday, 6 January 2010

A Week In The Life

We are now a week into 2010 and this is my first post of the new decade. It has been an interesting week, here are some of the highlights.

On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.

New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.

On January 2nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.

January 4th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.

In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.

January 5th – the boys go back to school.

January 6th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.

So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.

Until next time.