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. . .

Wales 09 or Don't Hold Your Breath

When going on holiday what is the last thing you want to forget? Sun cream? Swimming costume? Wheelchair battery charger? Ah yes, another Deal holiday gets under way with its customary smoothness.

Fortunately the Paul Sartori Foundation who had the misfortune to be responsible for my homecare while we were in Wales are a superb group of people and managed to wangle a suitable charger from the very nice man who had undertaken to mend the electric bed and overhaul the hoist. Sophie at Paul Sartori must have wondered what terrible thing she had done in a previous life to have merited such severe punishment as having to organise the seemingly endless and complex list of requests phoned and emailed to her from London. The result, however, was a model of homecare provision with a succession of nurses arriving to sort me out morning and evening with good humour and skill. Their team was supplemented by 'No Problem' Greg who drove vast distances morning and night every single day to form the lynch-pin of my holiday care, and met every task asked of him with a cheerful “not a problem”.

The holiday passed with a mix of Welsh sunshine and showers but left us plenty of opportunities to enjoy the lovely local beach. The Pembrokeshire countryside is wonderful and we got to explore some places we had never been before. The boys particularly enjoyed the freedom afforded by a very safe environment and would disappear to play, armed with wooden swords, for hours on end with Alex from next door and other holidaying children. Ten days was not long enough so next year, Paul Sartori Foundation willing, we may try for longer.

A highlight of the holiday was our day spent at the Pembrokeshire County Show. This vast three day event takes over a local air-field and despite my wife's disparaging attitude of “why am I going to look at tractors?” turned out to be great fun. There were horse jumping competitions, dog agility trials and a truly breathtaking motorcycle display team who shot up ramps with such gravity defying acrobatic death-wish like grace both Polly and I wondered if their mothers knew what their sons did for a living. As one young man leapt some fifty feet in the air and casually let go of his bike, we both turned to our open-mouthed boys and said simultaneously “No!“ There were lots of rides and bouncy things for the boys to go on, including an army operated climbing wall which both of them gleefully scrambled up. As Sam abseiled down he banged his head on the tower and a whole platoon of battle hardened soldiers went “Ouch!“ (Sam was fine, his main concern was making sure we had all seen he had climbed as high as Matty.)

Of course, it wouldn't be a proper Deal holiday if all had gone smoothly. About a week into our stay the alarm on my BiPap ventilator began to go off with increasing regularity each night. Now the display on the BiPap is something akin to the tactical array on the USS Enterprise and it tells you such useful things as pressure, duration of breath, number of breaths per minute and whether your Phaser is set to stun. You can also turn off the alarm – for two minutes, after which, unless the problem is sorted, the piercing alarm goes off again. . and again. The display told us that there was a leak in the system but if there was we couldn't find it. The alarm began to go off at about 11 o'clock every so often, but by about 3 o'clock it was going off continually. Polly would get up to disarm it time and again but it always went off as soon as she crawled sleep deprived back to bed. It got so bad that Paul Sartori arranged for a night-nurse to stay over for the last night because they were concerned about Polly being safe to drive back to London. The nurse spent the night frantically stabbing at the alarm off button while I was dragged in and out of sleep. I was seriously thinking of taking the wretched machine down to the beach and throwing into a rock-pool. We rang the Brompton hospital but getting an engineer into the wilderness of west Wales is no easy matter especially when mobile phone reception is as variable and unreliable as a Libyan terrorists conviction. In the end we decided to leave it until we got home.

We stopped in Bristol to see my mum on the way home and didn't get back to Carshalton until gone 9 o'clock. That night Polly slept with the BiPap virtually tucked under her arm. Throughout the night the alarm went off time and again. The next day an emergency engineer drove a hundred miles to come and fix it. After prodding and poking it he checked the record detailing the machines history. “There must be some mistake,“ he told Polly. “It says here the alarm went off 582 times last night. That can't be right.“ Polly just laughed hysterically. Further prodding and poking revealed there was nothing wrong with the bloody thing. Which means the problem is not with the machine but with me. Sigh.

As far as I can gather in my sleep befuddled state the problem occurs when I am in deep sleep. Apparently my facial muscles must be relaxing and allowing the pressurised air to escape through my mouth. The BiPap thinks there is a leak and alerts us to the fact. The engineer has given us a different machine that does not have an alarm but unfortunately it is not as powerful as the old one so is only a temporary solution.

I sense that a trip to the Royal Brompton Hospital is on the cards.

Of Wales And Wonders

Well, we've had the new car for a week now and it remains unscratched and undented. Polly has discovered Sport on the gear stick and now uses it whenever there is a bend in the road or a hill, or indeed, a tree by the side of the road. She is still getting use to the football pitch length of the vehicle and we have had to massively cut back a bush to get it into our parking space.

We are off to Wales on Monday for two weeks so if you don't hear from me it is because I am in the land of my fathers and wireless broadband access is rarer than hens teeth. If I can post I will but the odds are against it. Talking of Wales, I would like to take this opportunity to thank the people at the Paul Sartori Foundation who have bent over backwards to make arrangements to organise care and equipment for our holiday. It must seem to them that accommodating the Deal's for a fortnight is more hassle than sorting out care needs in the rest of Pembrokeshire. I assure them we do appreciate the hard work.

Today a man from Possum came to fit a bracket to my wheelchair that can hold the Possum environmental control unit I have had for a while. This little grey box of electronic wizardry can operate all kinds of equipment, including the TV, the lamp, the back gate opener, and the front door intercom and opener. Up until now it has sat frustratingly just out of reach of me and the children have used it as one of the world's most expensive light-switches. Now it is attached to my chair. The only problem being, what with the already attached Neater Arm, my wheelchair is now the length of a pantecnicon. I have the turning circle of a bendy-bus and the chair is beginning to look more than a little Heath-Robinson. I am not safe to be out when there is even the merest hint of an electrical storm.

Right, I'm off to push random buttons on my gadgets to see if I can launch a nuclear strike.

The New Car Cometh

Well the new car has arrived, diamond black and the length of a cruise ship. We were expecting it to arrive sometime on Thursday afternoon but the driver delivering it had set off from the Wirral at 4.00am and arrived at about a quarter to breakfast. This meant we were able to take the gleaming new vehicle out for a spin for lunch.

The Caddy has an automatic transmission but Polly has only ever driven a manual so our first drive was accompanied by little shrieks of panic as she tried to stamp on the missing clutch and pointlessly reach for the gear-stick. Within minutes though she was driving like a pro and we all began to relax. We picked up Pam, Polly's mum, and headed down the A3 to Painshill where we sat outside in the sunshine and had some lunch and Polly stopped shaking.

The Caddy is much longer than the old Kangoo so I feel as if I am sitting a long way back from the driver. Polly suggests that we put up a grill behind the rear passenger seats and I can bark and drool from my position in the back. The only thing I find truly annoying about our glorious new Deal-Mobile is that there is no way to play an Ipod or MP3 player through the car stereo which for a car design so new seems ridiculous to me. A trip to Halfords appears inevitable. On one of the many plus sides, having side doors to allow the children in and out without them clambering all over the fronts seats is such an improvement on the old van that I find myself wondering why we didn't take an acetylene torch and cut our own. We also have air-conditioning so in the height of summer it is marginally warmer in our car than outside.

My friend PJ has been reading me reviews of the Volkswagon Caddy Maxi which agree the vehicle is good value for money but point out that because it is a van conversion, we passengers are essentially the human equivalent of plumbing equipment or frozen pizza. Well, if nothing else, we are comfortable, air-conditioned, cargo. Other reviewers besmirch Caddy owners as being people whose fecundity outstrips their budget. Uncomfortably close to the truth in our case.

When I was a child it was my ultimate vehicular ambition to have a car with electric windows. At the time the only cars that had such sophistication were luxury cars like Rolls-Royce's and Bentley's. Now I can bellow down the length of the vehicle and Polly can push a button and miraculously windows slide effortlessly down. I feel like a shouty millionaire.

We can not thank my family enough for their immense generosity in enabling us to possess our diamond black, wheelchair accessible vehicle. I always knew letting my little brother beat me at Subuteo when I was 8 would pay off in the end. Thank you.

Bits And Pieces

This, as the title suggests, is post of little bits of news, updates and observations. As I write I find myself in a slightly peculiar situation. Polly has gone to Buckingham Palace with her mother for the day and I am left here with the children. The Buckingham Palace visit was arranged as a birthday present for Pam and involves a tour of the state rooms and various exhibitions, but not, as both Pam and Polly secretly wish for, a chance to poke around Her Majesty's and Prince Phillip's private quarters. I am, however, not left alone with boys. Polly decided to make use of some of the help offered to us by various agencies at a meeting held a while back. As a result I am writing this with a woman sat silently in the corner of my living room. She is poised to do my bidding but I don't have anything to bid her to do. The boys are behaving in an exemplary manner, happily engaged in various games and I am finding it vaguely disconcerting having a stranger sat watching our every move. I'm sure she is very nice. I just don't know what to do with her. I'm busy writing this so I can pretend to be busy and not have to talk to her.

We have had the boys for nine and five years respectively and have managed not to break them. Then, in the course of one week, we discover that Sam has had urinary reflux and could, theoretically, have damaged his kidneys and that Matty needs glasses. Sam has always been prone to urinary tract infections but it is only after this weeks ultra-sound scan that we discovered how potentially serious it could be. Fortunately the kidneys don't appear to have suffered any damage, being of normal size and shape, but further tests may be needed to check for scarring. We have noticed Matty squinting a little recently and so Polly took him to the optician. He returned home sporting a rather smart pair of glasses which he now will be wearing most of time. Matty is not particularly upset by this because glasses are quite trendy at the moment at school and he reckons he suits the geek-chic look.

Meanwhile, we are breathless with excitement as the new car is due to arrive on Thursday. I can hardly wait. Polly, however, has had her patience tested to the limit getting the new car insured. Despite every other TV ad being for car insurance, getting an adapted vehicle insured can be tricky. You need to approach a specialist broker, of which there are a few but nowhere near the number available to non-adapted vehicle owners. We have had the old Renault Kangoo van insured at a reasonable rate with a company and were happy to transfer the cover to the new Volkswagon Caddy. Only the Volkswagon Caddy is not a van but a car. You might suppose we intend to drive our new car to Basra via Helmand province carrying crystal chandeliers and open bottles of Nitroglycerin by the amount of time it took Polly to complete the transaction. She was on the phone for over an hour and a half. Normally we like to insure our vehicles for anyone over 25 to drive. Now you have to be over 30 and have the proven ability to yodel whilst reversing.

Right, I'm off to see if my lurking stranger can teach the kids country dancing or something.

Until next time.

You Swine

The school holidays are under way. Traditionally in our household one or other or both of our children instantly become sick a few seconds after the final bell rings and spend the first week of the holidays dosed up on Calpol and Ibuprofen. It is as if their little bodies struggle through the final weeks of sports days, class assemblies and dressing up days - this year a circus theme. Matty and Sam went as strong-man and elephant trainer respectively – and then, when the excitement is over, they wilt and cough and sneeze and descend into puddles of sweat and puking misery. This year however both boys seem fit and healthy, if a little tired and scratchy.

Obviously this is good news, doubly so because of the lurking threat of Swine flu. It is a relief to know that H1N1 (the post code for Walls, incidentally) is typically a mild variant of the influenza virus, and only a danger to those with underlying health issues. Of course, being someone with the odd underlying health issue I have to refrain from poking the television with a stick every time some smug government spokesperson assures the country that Britain leads the world in pandemic readiness. I'm glad we do lead the world but when we are told “So-and-so died of complications arising from Swine flu BUT they had underlying health issues,” I am not, unlike the vast majority, greatly reassured.

I refuse to cower in self-imposed isolation but I would appreciate it if you are feeling under the weather that you stay (say 15 metres) away from me. At least until the much vaunted Swine flu vaccine is available. Meanwhile, I'll be clutching my batch of Tamiflu close to my chest

Party Animal

I am so OLD. Well obviously I am, I had my birthday last week. Thank you for all the best wishes received and for the occasional expression of surprise that I've made it this far. My family combined, in case you are wondering, to give me an Ipod Touch, 32 gigabytes of pure gadgety loveliness. But it is not my physical age that concerns me, but rather my level of mental decrepitude.

Last night we went to a party. A school friend of Polly, “I haven't got a thing to wear”, was celebrating her 40th birthday, and had hired the events room at a rugby club in deepest Surrey. We didn't set off until nearly 8 o'clock, and Sam kept whispering to me, conspiratorially, that it was past his bedtime and that he hoped mummy wouldn't notice. Both boys were thrilled to find, upon our arrival, that there was an abundance of children to play with, and all thoughts of bedtime vanished like the drinks at the free bar.

What struck me first was the sheer volume of the music. The function room was dotted with large round tables, down one wall was a finger buffet and in a corner was the bar. In the opposite corner, before which was an area cleared for dancing, was a DJ with an array of decks, speakers and flashing lights. The only thing missing was a volume control.

This is where I come across as all fuddy-duddy. The room was full of people sat, or standing, in groups, huddled together, shouting into each others ears. Any conversation conducted more than six inches from ear to mouth involved advanced mime and sign language gesticulation. After a few minutes bellowing at Elaine, our hostess, and with Polly, I found myself sitting, nursing half a pint of cider, in a kind of audio-isolation.

I amused myself by watching the series of photographs being presented one after another on a TV monitor affixed to one wall. Countless pictures of Elaine's childhood and family cycled by, intermittently punctuated by photographs of her with friends. Every now and then a shriek went up as someone recognized themselves (during a brief hiatus in the cacophonous music, obviously). I spotted Polly a few times, a distinctly unpromising pre-pubescent teen in horizontal stripes, and wondered at the processes that had transformed her into the vibrant, beautiful woman, dancing with our boys to Wham and a medley of Abba songs.

Judging by the pictures, one of the defining elements of growing up in the eighties was hair. Big hair. The array of perms, bouffant and otherwise, was dazzling. There was a particularly unflattering photo of Polly with an angled fringe. She punched me on the arm when I asked if it was from her Hitler period.

At one stage in the evening, when Polly had taken the boys to the loo, someone came to talk to me. I think his name was Colin but he was competing with 'Billie-Jean' at the time. (Apparently the kid is not his son.) I think Colin was asking me how I knew Elaine but he might equally have been asking for my opinion of global warming.

I realised, as a bleary-eyed Sam came and curled up on my lap, that I am not naturally a party animal. My cider had lasted all night and as much as I enjoy 80's popular music my ears were starting to bleed. Let's face it, I realised as I stroked my son's hair, I'm a grumpy old git.

Not Just A Mattress

For anyone who has been following the saga of the mattress, you will be thrilled to know that we have made significant progress. Well you may not be thrilled but I am. A few days a go a new mattress arrived that whilst similar to the previous one is subtly different. Instead of tubular cells filled with air this one has square cells. I am no longer slowly rotated at night but instead I lie supported and immeasurably more comfortable. Of course the new mattress is not really a mattress but is, in fact, an Advanced Dynamic Floatation System so obviously it is going to be more comfortable than any boring old mattress.

The last few nights have passed with a delightful lack of wakefulness and both Polly and I feel much better for it. I was even able to face Sam's sports day and see his team aquit themselves well in the beanbag-on-the-head and the potato-in-a-sieve relay races. I also went to see Matty perform all sorts of kicks and punches as he qualified for his orange belt in Karate. Matty is now able to protect himself against barefoot children in white pyjamas who shout “ Ai! “ whenever they move slowly in a threatening manner.

Bye until next time.

Perchance To Dream

It is probable that during the course of this post I will fall asleep. The last few nights have been truly miserable and I ache and I am grumpy and I can hardly keep my eyes open.

It is all the fault of the bloody air-mattress. It seems like a simple proposition. You lie on a mattress inflated with air. The air is gently circulated around chambers in said mattress thus reducing the likelihood of pressure sores and, as an added bonus, allowing a small degree of movement to anyone with strictly limited movement. Someone, picking an example out of the air, like me.

I have been complaining about my mattress for quite a while. Until recently I was sleeping on one with the comfort rating of a kitchen work surface. It moulded to my body in the way that granite doesn't. Any circulation of air was only detectable with instruments purchased from the manufacturers of the CERN Hadron collider. The children refused to bounce on the bed because they said it caused compact fractures.

I currently have an air-filled overlay on a memory foam base. Now I can feel the air circulating all right, but the effect is to cause me to roll backwards in my sleep, turning me like a frankfurter on one of those warmers you see in cinema vending areas. I then get stuck in unbearably contorted positions that require Polly to engage in bleary-eyed remedial disentangling procedures. Last night there were seven such instances and I feel like a piece of string at a cub scout knot tying practice session.

I have now tried all the alternatives available through the community occupational therapy service. I have identified the product I think I need. I have at least two senior consultants saying it is a medical necessity. Everyone seems to agree that it is worth trying but can I get hold of the bloody thing? Can I buffalo. Emails and phone calls vanish into the ether. The details wander lost through cyber-space and everyone seems to want one more level of clarification before they can act. It's only a mattress! I know it's quite an expensive one but surely we could hire one for a few weeks to see if it helps. It must be cheaper than paying for the hours of anger management therapy that I will require if I don't get a good nights sleep soon. And think of Polly. Every time I need moving I have to wake her up. We've barely had an uninterrupted nights sleep in months. For pities sake, if any of the many health care professionals reading this don't act soon there will be a tragic case of matresscide to explain to the public inquiry that will surely follow. Act now and save your careers and reputations.

Right, I'm off for a coffee. Triple espresso I think.

Don't Bat An Eye

I am so sorry for the lack of posts recently. This is entirely down to the fiendishly tedious manner by which I am compelled to type these days. It is terribly frustrating, laborious and time consuming and deeply depressing. I know some profoundly disabled individuals manage to write entire novels by batting their eyelids one letter at a time but they must be blessed with powers of persistence and patience way beyond mine. Even though I am using sophisticated text prediction software just writing this paragraph has taken more than fifteen minutes. At some point in the near future I am going to have to invest a great deal of time and, no doubt, money in improving the situation.

The last week or so has seen the south-east of England in a heatwave, with temperatures regularly above 31C. Generally I enjoy hot weather but sitting on a metal ramp in a metal wheelchair has been a bit much even for me. It's been like carrying your own radiator around with you for a week.

Right, enough for now. I will be trying to write little but more often in future. Please bare with me. I will be exercising my left eyelid in preparation for future posts.