Monday, 30 November 2009

Fair's Fair

Last Saturday was the school Christmas fair and it was all hands to the deck. A school fair is the Burn (Polly's maiden name) family's natural habitat. Despite being swamped in clown doctoring and Polly Mixturing, Polly somehow managed to find herself agreeing to design, make and wear a Polly's Pockets crinoline hooped dress covered in pockets for children to pick presents from. Of course, it was a huge amount of work, involving a temperamental sewing machine, some hula-hoops and yards of material, and quite a few late late nights, but the final result was thoroughly satisfactory.

Meanwhile, Pam, Polly's mum had agreed to run and stock Nanny's Stall. She had been collecting toys, ornaments and bits and bobs for months, as well as knitting cardigans at a prodigious rate. It took two car trips to transport the accumulated stock to the school.

On the day Polly and Pam disappeared off to the school early leaving me to sort out the boys. It turned out that it is easier to corral custard than get two boys ready to go out. You say, “we're leaving in five minutes. Have you got your shoes on?” They hear, “we're leaving in five minutes. You have time to start a computer game, build something large out of Lego, and have a pillow fight whilst bouncing on the bed.” It is a miracle to me that Polly ever gets them to school of a morning. Eventually they announced they were ready to go. Sam appeared dressed in a t-shirt and a pair of shorts. I sent him back to find some jeans and a warm top. He was indignant but reluctantly went back to change. He reappeared wearing a cardigan that had last fitted him when he was three. I sent him back to change again. Sam, with a perfectly straight face, denied that he had any other clothes.

Many minutes later we were on our way, walking across the local leisure centre's car park, when Sam announced he had forgotten to bring his purse which contained all his spending money. Back we went.

By the time we arrived at the school the fair was well under way. Polly was surrounded by a horde of small children handing over their 50p coins and rummaging in her many pockets to find presents. Pam was doing a roaring trade on Nanny's Stall. Hundreds of people were milling around. I retreated to a corner and hid.

My wheelchair allowed me to rise up and survey the scene. Occasionally the crowds would part to allow Sam, wielding a puff of pink candy-floss like a sticky magic sword, to pass through. Matty would appear periodically to beg more money to invest in trying to win the fastest Mario Kart lap on the Wii stall.

We're not sure yet how much was raised for the school at this years fair, but if the efforts of my family are anything to go by, it should be a lot.

Until next time.

Monday, 23 November 2009

Me Versus The Blackberry Storm 2

I am one of those fortunate people who knows instantly what to do when faced with a computer or technology based problem. I call my friend PJ and beg him to sort it out. However, occasionally I am the person called upon to impart wisdom on matters technological. I swear that I have never pretended knowledge of anything more complex, computer-wise, than an abacus but sometimes people mistake my intense concentration when I am writing for computer literacy. My mother, who has one son with a doctorate in computer science who runs a highly successful software company, still prefers to ask me to solve her internet connection problems. My advice usually goes as follows: “Turn everything off, mum. Wait five minutes and then turn everything back on again.”

Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.

Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.

The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.

Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.

The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.

I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.

Until next time.

Tuesday, 17 November 2009

When Polly Gets Flu

Polly has had flu. Now whether this was the infamous Swine flu or your common or garden flu flu we are not sure. In fact no one is sure, not the NHS helpline, our doctor or indeed, the several other people who have suffered similarly.

Now I love Polly. She is wonderful in so many ways I do not have time to list them all. She (and by extrapolation the children) is absolutely the best thing ever to have happened to me. She is kind, clever, caring and funny. But she is rubbish at being sick. Firstly she believes she is completely indispensable to the running of the universe and that the whole of creation will fall apart if she takes any time off. If she is enforced to go to bed for a while she gets annoyed if the world manages to continue orbiting the sun without her personal assistance and guidance. If, however, the universe somehow manages to struggle on without her, she gets incredibly annoyed if it doesn't tidy the living room in exactly the way she would have done.

Polly has to feel really ill before she relinquishes control of the cosmos. On this occasion she was ill enough to go to bed during the day which is something she begrudges deeply because she 'should be doing other things'. 'Doing other things' means doing all the things that mummies do, children's entertainers do, clown doctors do and rulers of the universe do.

Polly being ill is nothing compared to Polly feeling a little bit better. Polly very reluctantly cancelled a gig at the Royal Marsden but only because flu, cancer, chemotherapy and sick children are a volatile combination. However, Polly feeling a little bit better essentially means Polly catching up with all the things she feels she hasn't done as well as continuing to do all the things she would normally be doing and perhaps a few other things in case anyone suspects her of idleness. Lesser mortals, such as myself, are left wallowing in her wake as she bakes cakes for cub fund-raisers, manages my sisters house restoration, entertains at 4 year-old boys parties, makes Christmas cards and oversees the middle-east peace process. Suddenly she will complain of being tired and look at me as if it is entirely my fault.

At night, my usually delightful bedtime companion becomes an irritable, tetchy, scratchy sleepless nightmare. I cannot move, breathe or mumble sweet nothings without bringing about the kind of reaction that is usually a precursor to all out war. Every creek, every variation in light, every child's nightmare, is my fault. Will no one let her sleep? Don't I realise that she is sick?

The problem for Polly, and no doubt mothers everywhere, is that just because she is ill does not mean that life stops to compensate and allow her time to catch up. I do my best to help make things run smoothly but honestly, is it too much to ask that we don't run out of proper coffee? I've had to drink instant. Yes, when Polly is sick we all suffer. Thank God it's only woman flu.

Until next time.

Thursday, 12 November 2009

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.

Tuesday, 10 November 2009

A Long Dark Midnight Snack Of The Soul

On Saturday Paul and Darren (also known as Rock God and Bass Bin) pulled the hay from their hair and smartened themselves up to make the trip east to the big city and to visit me. As ever I feigned delight at seeing them and we soon fell into a decades old pattern of abuse and nostalgia. Having known each other since infancy we have a lot of nostalgia between us.

Paul, when not playing deafeningly loud rock music in dozens of west country pubs and music venues, works as an administrator in the beloved NHS where he is a highly valued, well motivated and appreciated member of a dedicated team. Or as he puts it - “Just because you're essential doesn't mean you're important.”

Darren runs his own company called Project Link where he oversees the building of refrigeration storage unit type thingies. In a very real sense he is a fridge magnate.

It was great to see them both again, even if it meant I missed a fireworks party round at Catherine and Stewart's home. But as Cath told me at the school gate when I was rounding up the boys from their educational duties, I can see them any time. I then realised I hadn't seen them in ages, what with chest infections, bad backs, and sheer bone-idleness. Then I felt guilty.

I'm was feeling exceedingly emotionally frail yesterday due the mother of bad nights I had had. Usually I fall asleep quite easily and when I don't I have certain mental processes that normally are effective. Failing those, I just read some more. No problem. That night nothing worked. I don't normally get stressed about the odd night of insomnia; after all, it's not as if I have anything too critical to do the next day. But as the night dragged on and on I began to feel trapped. All I wanted to do was get up, wander about for a few minutes, and perhaps make myself a drink. Of course I couldn't. Getting up for a few minutes would take about fifteen minutes and then another ten or so to get back in to bed. Not to mention the time it would take for the ambulance to arrive if I tried to make a hot drink. The trouble was I can remember being able to do those things. I can remember making my own hot drinks and carrying them safely to a table. I can remember just getting out of bed because I had forgotten something. My brain, on Sunday night, kept telling my body to just get on with it and my body just laughed. I became increasingly aware of all the things I can't physically do any more, which at 3 in the morning is a very dark place to be, both literally and figuratively. (Well not literally actually. Our bedroom is anything but dark, what with the little green light from the ceiling hoist, the orange battery charger light, the red bedside clock, the varying green light on the ventilator, the hoist power supply light and, of course, the ubiquitous sodium orange glow of urban living that leaks through the curtains. Sometimes I think we should relocate the room to Blackpool.)

I am perfectly aware that it was sleep deprivation that was behind my long dark midnight snack of the soul. Once the thought was in my head I couldn't switch it off. I lay there feeling trapped. Of course, it wasn't sufficient for me to suffer alone. My occasional gentle shuffling eventually woke the light of my life who was full of sympathy (the first few times). Apparently me turning a small light on to read by in the middle of the night occasionally can be a little bit annoying. (Who knew?)

I survived, of course, although, for some reason, Polly was a little bit tetchy the next day. I'm not naturally given to navel-gazing self pity (unless I'm writing this blog) so I found the experience a bit disconcerting. Even worse, Polly, who habitually reads this over my shoulder while I write, in case I malign her in any way, became all upset when she read I felt trapped. “What do you mean, trapped?” she demanded. “Trapped in a loveless marriage?” “What? No!” I answered, genuinely confused. “Oh, that's okay then,” she said, somewhat mollified. “I was just checking.” Then she added, “You need to get some fresh air.” Which is why I ended picking up the boys from school, meeting Cath, and feeling guilty of friendship neglect. Who says life has no symmetry.

End of ramble. Until next time.

Friday, 6 November 2009

Less Pain And Wheelchairs

Those of you who follow such things will be glad to know that I will soon be able to resume my life of adventuring. My rafting trip up the river Amazon to train piranhas in dental hygiene techniques will proceed as planned now that my back is so much better. Dr Toosy popped in to check it wasn't osteoporosis and that it is actually getting better. (It wasn't and it is.) I have been been able to cut back on the pain-killers and have started teaching our goldfish to brush regularly.

Rations on my anticipated adventure have been sorted. My team will be eating the tins of baked beans that had previously served as table leg extenders. There may be some argument over who gets the tin of curry flavoured beans. We have been able to free up these valuable resources because Polly has found some wooden blocks that are designed for the purpose of extending furniture legs. They lack the je ne sais quoi of the Heinz tins but are less likely to collapse and squirt tomato juice all over our living room.

Today the man from Serco came and took my old wheelchair away. This was good for two reasons. Firstly it means I feel I can trust my new super-duper wheelchair. There has been no repeat of the breakdown I suffered just days after I first received it. And secondly, we don't have space to store a spare electric wheelchair. The old one has stood in our living room like a particularly unattractive decorative feature. Polly had taken to looking at it gloomily and wondering if she would be able to stand the Christmas tree on it. I had pointed out that the old chair did have a tilt mechanism so that would have helped with the age old problem of getting the tree to stand up straight.

Right, enough for now. I still have to organise with social services for carers to come with me on my Amazonian adventure. There may be a few health and safety issues.

Tuesday, 3 November 2009

A Pain In The Back

This is my first post for a week. There is a reason. I've hurt my back.

My expedition to climb K2 in a wheelchair was going well until I had to traverse a ledge that required swinging on a rope some 30 feet across a vertical drop of 400 feet. Suddenly the 3 year old son of one of the Sherpas kicked his red ball over the edge and ran to follow it. As the child began to tumble I had a spilt second to adjust the settings on my whiz-bang new wheelchair to rescue mode and change the direction of my swing. I plucked the child out of mid-air and kicked the ball back to safety. But as I handed the boy back to his grateful father the wheels on my wheelchair lost their grip on the ice and I felt myself slipping over the ledge and beginning to fall. Instinctively, I reached for the safety rope but it was too late and I fell the 400 feet towards the rocky terrain below. Fortunately my time in the Parachute Regiment had taught me how to roll with the fall and absorb the impact. Even so, I suffered a back strain.

That is what should have happened to be commensurate with the degree of pain I have suffered. The truth however is somewhat more mundane. Polly was helping me adjust my position so I could go to the loo. Suddenly the headrest on my chair gave way and I slipped back and sideways. I didn't slip far and although I was surprised and a little shaken no harm was done. Or so I thought. We fixed the headrest and I forgot about the incident. Until a few hours later.

In recent weeks I have been able to cut down on my pain relief medication by at least 80%. All that was undone by the time I whimpered my way to bed. The next few days were excruciatingly painful. I was unable to even lean forward enough to sip coffee through a straw. Being hoisted here, there and everywhere several times a day wasn't helping.

Being male I gritted my teeth and manfully bore the pain uncomplainingly until Polly had had enough and rang the doctor. He wanted to check it wasn't kidney stones or something more exotic than a strained back and then prescribed Diclofenac Sodium 50mg, an anti-inflammatory pain killer. Today I feel marginally better. At least I can drink coffee without nearly passing out. And I can wield a stylus once more.