Wheelchair Woe

A man came to collect my ten day-old, whiz-bang, high-tech, rinky-dink, brand new, multi-thousand pound wheelchair yesterday. Apparently it's broken. It may be a programming problem or it might be a stuck micro-switch. Either way I'm not sat in it now, which is a pity because I really like it. Hopefully it will be returned to me tomorrow in fully functioning order.

I'll let you know what happens.

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.

Of Ben Hur and Polly

Now, where were we? Oh yes, struggling manfully against terrible illness. Right, done that. I'm utterly wiped out but well on the mend. The nasty green gunk has faded to white and there is less of it. The steroids seem to have kept the worst of the irritation caused by continuous coughing at bay and my temperature is back to normal. I know from experience that it will probably take at least another week to regain lost stamina, but, unless the children come home from school with Swine flu or typhus this week I'm probably in the clear, for now.

Thank you for all the 'best wishes' and 'get well soon's. As well as the occasional 'What? Your doctor follows you on Twitter? Cool.'

As previously mentioned, on Sunday I literally dragged myself from my sick bed to go and see Ben Hur Live! at the O2 arena in Greenwich. To be honest, had it been virtually anything else I would have forgone the experience, but how often do you get to see a Roman based theatrical extravaganza? It even promised a real chariot race. You'd have to be sick indeed to miss that.

I haven't been to the O2 since it was the much maligned Millennium Dome. It has changed a lot but the disabled parking is still rubbish. According to my wheelchair, the £10 reserved disabled parking slot we had pre-booked was 1km from the actual arena. Needless too say, we missed the very start of the show where Judah Ben Hur is born in Jerusalem on the same night as another baby is born in Bethlehem. We joined the story when Judah is reunited with his Roman childhood friend, Massala.

The stage show pretty much follows the plot of the Charlton Heston film and includes a spectacular sea battle against pirates, a Bacchanalian party, gladiatorial fights and, of course, the famous chariot race. And yes, four teams of four horses pulling chariots raced around the arena in a (carefully choreographed) thrilling race, complete with wheel falling off accident. I loved every minute and would heartily recommend it to you when the show returns in early January next year.

I paid the price for my Roman adventure in terms of exhaustion but it was worth it. Polly bought the tickets for our 16th wedding anniversary and has spent the week explaining to anyone who would listen that I am a grown up and she can't actually forbid me from risking my health in pursuit of entertainment. By the way, our actual anniversary is today. No, I didn't forget. I have bought Polly a rather stylish lamp for the living room.

So finally, happy anniversary, darling. I don't know why you love me, but I give thanks everyday that you do. All my love, always.

Until next time. Bye.

Poorly Puppy

As you can tell from the fact that I'm updating this blog, I'm still alive. I'm being very sensible, eating a little, drinking fluids, taking my medicine, having nebulisers and not attending arena based spectacles in the south-east of London. No sir, I'm a good boy.

I am, however, sick of being sick. I can't even lie back in my new whiz-bang wheelchair without drowning in self-produced fluids. Worse still, in many ways, I know I should be grateful that this is still a relatively minor illness by my standard, and I should be happy that I've not been carted off to hospital to be ventilated through a tracheotomy. Still, it's only September, and a long winter looms. Oh enough, Stephen.

Disconcertingly, my GP reads this blog, so, given my stupidity on Sunday, it was with some trepidation that I had Polly ring him to confess that the nasty green stuff in my lungs was, indeed, still nasty and still green, despite 5 days on Co-amoviclav and a course of Prednisolone. So, now, Dr T, having noted that according to Twitter, I was feeling a bit better, has forgone a switch to Ciprofloxacin but has upped the dose of Prednisolone. (He did phone to check I was actually improving – he doesn't just diagnose and prescribe based on Twitter tweets, he's a professional after all.) He's also ordered a sputum test. (I tell you all this because I know Jacq, Ronnie, and any other GPs reading this are itching to know.)

Polly went to the Chemist in the village to collect the prescription. It was not, she told me, our regular pharmacist, but another pretty young woman, who, having done the necessary identity checks, remarked, as she handed over the bag of drugs, that she had looked at my file on the pharmacy computer.

“Poor Mr Deal, ah, bless him,“ she said chirpily. “He has been a poorly puppy.” Sweet.

Polly says that in 16 years of marriage she's never thought of me as a puppy. Many other creatures however. . .

Until next time. Bye.

How To Be Sick And Stupid

Thursday evening: start to feel a bit rough.

Thursday night: Very hot, coughing.

Friday morning: ill. Nasty green stuff evident in lung. Phone the good doctor Toosy, who must have groaned inwardly. He decides not to mess around and prescribes anti-nasty green stuff-biotics and steroids. Take Paracetamol. Use Salbutamol nebulisers. Very anxious about something.

Late Friday morning: new wheelchair arrives with accompanying engineer and physiotherapist. . Too exhausted to be excited. Will write about chair soon.

Friday afternoon and evening: miserable.

Friday night: coughing, hot, sweaty, anxious.

Saturday: sleep until 3pm. Spend rest of day bravely rallying. Eat a little risotto. Go to bed. Have taken decision. Sleep.

Sunday morning: if you are a doctor, especially my doctor, stop reading now. Went to O2 arena in Greenwich to see Ben Hur – Live. It's our anniversary this week and Polly had booked it a while ago. I sooooo wanted to see it. Fabulously spectacular, will write about it soon. Drove home over every bloody speed bump in South London.

Sunday evening: pay for earlier stupidity. The whole going to bed thing a ghastly, messy, embarrassing disaster. Apologise to carers.

Monday morning: exhausting get up. Still getting used to new wheelchair. Drugs, nebulisers and cough-assist machine. Decide to update blog.

More soon, assuming I live. Bye.

Managing The Bathroom

I'm not sure how this story will translate for international readers but it made me laugh.

Polly and I have undertaken to project manage the renovation of my sister and brother-in-law's house in Surrey. Helena and Andrew have been living and working abroad for the last few years and the house has been on the rental market. It needs a lot of work doing to it and so various quotes are being acquired. Fortunately Helena was in the country last weekend and was able to go through the various aspects of the job with us in person. She decided, rather than repair the bathrooms, she would have new ones fitted, so asked us to find out how much this would cost. I asked her if she wanted us to refit the downstairs cloakroom while we were doing the bathrooms because a third lavatory wouldn't cost much more than two.
“You might might be able to get a three for two deal or something like that,“ I observed.

“Surely, if you get buy one lavatory and get one free,” quipped Polly, “that special offer would be a BOGOF!“

As I said, it made me laugh.

Faster Than A Speeding Snail

Yesterday I had a fitting for my new wheelchair. Yes, it's the kind of wheelchair that needs fitting. Mind you, it also the kind of wheelchair that requires an engineer and a physiotherapist to explain how it works. It has so many configurations I began to think piloting a Harrier Jump-Jet would be simpler. The controller has more modes and computing power than Deep Thought.

The chair is amazing. Thanks to a grant from the Joseph Patrick Trust I have been able to have a seat-riser fitted which allows me to rise up to my standing height. The seat tilts as my current seat does, but in addition the back-rest moves independently. Each of the foot-plates can be adjusted at the press of a button. As I played with the controller I found that I could configure the seat so that for the first time in years I actually felt comfortable. The expression of relief on my face made Polly feel quite emotional. Little details like calf supports and silicon gel covered armrests add to the degree of comfort. Even the head-rest is infinitely adjustable.

Of course, this being me, not everything was perfect. The chair is significantly higher than the present one which means we need to raise our dining table using blocks. And because the motorized foot-plates are more complicated to take off the carers are going to find transfers more difficult. The chair is a little longer as well which means taking certain corners around the flat will be more challenging. I'm sure these things will lead to a deal of frustration and no doubt those frustrations will be reported on these pages but at the moment I am almost beside myself with excitement.

The wheelchair has gone away for fine tuning and adjustments, not least to reprogram the controller so that the chair goes at more than the 0.5 miles an hour it would only go yesterday. This was particularly embarrassing when I wanted to nip out to the car and check that the chair would fit in it. It took nearly 15 minutes to get round the corner while the engineer frantically phoned the office for instructions on how to access the power menu. I am assured it was only a programming glitch and can be easily fixed. I hope so or all I will be taking delivery of next week will be a very comfy armchair, albeit one that moves faster than a speeding snail.

I will keep you informed.

The Sony Reader

I feel it is time for a moan. It's only tangentially related to disability but, what the heck, it's my blog. I have a love. No, not the small, bobbed haired light of my life, but those things with long strings of words and a narrative, books. I have always loved books, ever since John and Janet watched Spot run and helped me to associate the little squiggles on the page with words in my head. My grandparents had lots of books and so did my parents. I have thousands, even though in the last year or so I have had to give away many hundreds for want of space. I am not unduly precious about books. I do not insist that a paperback's spine remains pristine and I will not do you actual physical injury if you turn down the corner of a page, though I may whimper. Books are, after all, meant to be read.

I don't go anywhere without a book. Polly will tell you that I had a book tucked down the side of my wheelchair when we got married, just in case there was a lull in the proceedings. Once, when I was in an Intensive Care Unit and in an induced coma, the hospital rang Polly in the middle of the night, anxious because I would not settle. She arrived to find my left arm fidgeting and grasping and at risk of pulling out the various cannulae that were keeping me alive. “He wants his book,“ she told the bemused nurses and placed a paperback in my hand, whereupon I apparently relaxed and didn't come to for four days. You take my point? Books are important to me.

I tell you all this, not to impress you with my literacy, because I generally read popular fiction not high-brow Whitbread prize winning literature and it's been a while since I read anything that might be deemed a classic. (Scroll down on the right to see a list.) No, I tell you this because I want you to understand how upsetting and stressful certain changes in my condition have become when I find myself unable to manipulate and hold up some books. Not all books, thank God, but hardback books and paperbacks over a certain size. During the day it is not quite so bad because I can rest the book on a table and using various bits and pieces as weights can hold the pages open. It's a bit tedious when I want to turn the page but it works. At night, however, reading in bed is another matter. Constraints caused by BiPap masks and necessary sleeping positions mean that holding a book, virtually any book, is hard work. Holding CJ Sansom's 500 page Revelation or Ken Follett's 900 page epic The Pillars Of The Earth is nigh on impossible.

But then, Oh Happy Day! Sony came to my rescue. Late last year the Sony Reader came to our shores. An electronic device that can store in excess of 120 books (and you can buy a memory card that raises this to several thousand) displayed on a non-flicker screen using Sony's patented e-ink. Gadget heaven. To turn a page you just press a button. You can even change the font size. Sony have done a deal with Waterstones (and now, apparently, WH Smiths) to publish books in the appropriate Adobe Digital Editions format which you can download from their web-site.

As with the early days of online digital music, not all books are available in the format yet, but a fair number are. I still have to buy paperback editions of some of my favourite authors such as Christopher Brookmyre, Bernard Knight and Susanna Gregory, but presumably, given time, someone will notice these grievous lapses and deal with such shortcomings in the available library.

So, how much do you think these e-books, where available, cost? Remember there are no warehouse storage costs, no shop with shelf space to rent, no paper or ink to buy, no presses to run, no postage for delivery, and no shop workers to pay. You do still have royalties, web-space and web-design to pay for and a legitimate profit to make. Should an e-book cost the same or less than a paperback? A hard back? Bear in mind that you probably want people to buy material in the new format so you presumably want it to be competitively priced.

Well let's see, shall we? The new Simon Scarrow novel The Gladiator has just been published in hardback. I can buy it from Amazon.co.uk for £8.09, for £10.79 from WH Smith, and for £12.99 from Waterstones. In Adobe Digital Format for the Sony e-reader? It costs £14. 09! That's six pounds more than a hardback version from Amazon (including free delivery with Amazon prime).

There! I told you I was going to moan. I can't help thinking that Sony and Waterstones are doing themselves no favours. I for one can't wait for Amazon's Kindle e-reader to arrive in the UK. Then, at last, we'll have competition to drive prices down.

I wouldn't enjoy life so much without my e-reader but I do feel I'm being taken advantage of. Now, I had better pay some attention to the other love of my life.

Until next time. .

Unbalanced

Okay, where were we? Back from holiday, that's right. Back from holiday and straight in to a carer crisis. One of my long term carers suddenly started arriving late or not arriving at all. There were, of course, all sorts of reasons, some understandable and some not so. The result, anyway, was that I spent several days stuck in bed for an extra hour or so, or hanging around in the evening, ever shorter of breath, waiting for replacement carers to arrive. The situation has settled down somewhat but I'm still not sure who is going to turn up morning and night.

Further complicating the situation has been my BiPap mask problem. As mentioned last time, I appear to be leaking in deep sleep. The air pushed in to my lungs by the BiPap machine is under pressure and the mask I use is a nasal one. In other words, a mask fits to my nostrils and blasts air up them and in to the lungs, fully inflating them, and thus facilitating O2 and CO2 exchange. The system only works effectively because of the pressure. However, when I am in deep sleep, the muscles in my face relax and the pressurised air short cuts the lungs and escapes via my mouth. The BiPap machine has interpreted this as a leak in the system, it's little computerized brain assuming someone has stuck a pin in the tube or unplugged something in an attempt to assassinate me in my sleep. Although I don't actually die (you'll notice), the effect is, over the long term, a build up of CO2 and resulting headaches and mental sluggishness.

To solve this problem I have been sent, from the Royal Brompton Hospital, various alternative face masks. The first one covered both my nose and mouth, which obviously solved the mouth leaking problem, but was terribly hot and uncomfortable and turned any saliva in to dry, crispy flakes. It also leaked tiny amounts of air around the sides causing occasional high-pitched squeaking sounds. Horrible. The next mask was a full-faced one, covering eyes, nose and mouth. It looked suitable for deep-sea diving. I am not a naturally panicky person but the moment I put this mask on I felt unbearably claustrophobic. My eyes watered and my nose itched and I couldn't touch them because of this plastic casing. I managed nearly two minutes before freaking out and trying, unsuccessfully, to rip the thing from my face. Fortunately Polly came to my semi-hysterical rescue while the carers flapped ineffectually.

So, at the moment, I'm using my old mask with an alternative, non-alarming BiPap machine. Unfortunately this machine is less affective (due to its limited pressure settings) and although I am not being woken by an alarm I am, presumably, still leaking air in deep sleep. This is a situation that can't go on too long. If I start writing complete gibberish (as opposed to the normal nonsense), you can assume my gas levels are unbalanced and I'm being poisoned.

Until next time. . .