Wednesday, 30 December 2009
I had a run of deterioration in my Muscular Dystrophy which caused me some concern early in the year but a new super-duper wheelchair has gone some way towards compensating for that. I lost the ability to raise my arm in such a way as to be able to eat meals. A devise called a Neater arm has greatly helped with that problem. Frankly it was a bit scary at the time but I've got a new consultant at Kings who actually knows something about FSH MD and managed to reassure me that my condition was not spiralling out of control, just reaching a tipping point. The new wheelchair combined with a decent air mattress has meant I've been able to cut down on about 90% of the painkillers I was on. I've decided to postpone my demise for another year.
Sam has had his kidneys scanned and they have been deemed satisfactory. Matty is now wearing glasses, something he is perfectly happy with and he is now perfecting his geek-chic look. Polly has now qualified as a fully fledged junior Clown Doctor. She works once or twice a week at Great Ormond Street Hospital and the Royal Marsden. The work is sometimes traumatic but always deeply rewarding. For reasons I don't fully understand she has decided to learn how to play the ukulele. And since Matty is intending to learn the guitar I dread to think what our home will sound like next year.
A highlight of the year was when we received our new car, a Volkswagon Caddy. It is significantly longer than our old van which means we all have a bit more space. We only have this fabulous new vehicle because of the generosity of my brother and sister. Best of all, it arrived in time for our holiday in Wales.
Since I last blogged we have attended the deadly Christingle service where hundreds of children wave oranges with lit candles stuck in them around. This year both Matty and Sam took part in the Nativity play. Sam was a fearful shepherd. He was given the direction to look scared when the angel of the Lord appeared. While the other shepherds stood rooted to the spot Sam 'acted'. You would have thought that the angel Gabriel had appeared in the guise of Freddy Krueger. Matty meanwhile was cast as Joseph. He managed, with 9 year-old aplomb, to walk Mary to Bethlehem in a manner that showed loving, husbandly devotion but at the same time subtly conveyed the message that, in real life, he and the girl were not actually an 'item'.
Christmas day morning was spent at home in a frenzy of present opening and included a visit from Nanny, Pam, Polly's mum. In the afternoon we travelled to Dulwich and my brother Simon's new house. To get into the house I had to cross the gravel driveway in which I got stuck. The tread of my wheels became embedded with tiny stones which had to be individually removed before I dared move onto the newly fitted real wood flooring. We had a great time as my entire family gathered, including my sister Helena and her family all the way from Texas. Fortunately Simon and Jaspreet's house is huge so 6 boy cousins and 9 adults had plenty of space. In fact, had we wanted to, I think we could have played 5-a-side football in the living room.
So, as 2009 comes to an end I'd like to thank everybody who has kept me alive this year and to everyone who reads this blog. I appreciate your company and your comments. I hope you will stay with me for the new decade. I'm certainly intending to stay with you. Happy new year.
Until next time...
Wednesday, 23 December 2009
Sunday evening had been very pleasant. Polly had performed at her last party of the year, danced the 'I've finished! I've finished!' dance, and we had celebrated with a rare Indian take-a-way. We don't eat take-a-way very often because oily food makes my chest bubbly, but the last party of the year is always a momentous occasion and must be marked accordingly.
By the time the carers arrived I was feeling a little bubbly but was not unduly concerned because I would soon be in bed on the BiPap ventilator. And so it proved. While Polly watched Cranford, a BBC costumed melodrama on TV, I was retired to bed to happily read Bernard Knight's Fear in the Forest. It felt a bit like breathing soup but the BiPap forced air in and I relaxed into it knowing that eventually the mucus in my lungs would be broken down into a kind of froth that could be relatively easily coughed up. The process was taking time but I was engrossed in twelfth century Exeter's problems and so focussed on those rather than on the crackly noises coming from chest.
And then there was a power cut.
The air being pushed into my lungs stopped mid-breath. The room was plunged into darkness and the alarm on the ventilator started its piercing shriek. The rational part of my brain assured me I wouldn't suffocate but the more primitive part knew this was nonsense and that death was imminent. I tried to suck in air through the now useless mask but the froth in my lungs gave the illusion I was drowning. The suddenness of having the breath snatched from me caused me to briefly panic and I had to fight to calm down. All this took only a few seconds. I then heard Polly rushing up the hallway and her voice telling me it as all going to be okay.
My bed is an electric profiling bed that can be raised or lowered, tilted or reclined to help me change position or sit up. The operative word here is electric. During a power cut it is just a bed. Polly came into the bedroom knowing she had to sit me up because breathing whilst lying down is difficult for me. Using leverage and brute force she raised me to a sitting position and removed the mask. She then rushed off to find a torch and then the emergency battery pack for the BiPap. It took a few moments but soon the ventilator was working again and the mask was back on. Air rushed back into my now aching lungs but the mucus had shifted and part of my lungs were blocked off. Polly helped me lie down again.
Other problems were arising. Our heating had gone off and as snow was falling heavily outside the temperature was already plummeting. My electric blanket was now just a rapidly cooling thin sheet. In addition, my electrically powered air mattress was deflating beneath me. Still, at least I could breathe. Polly looked at the control panel on the BiPap. It told her that the emergency backup battery was only a quarter charged. I had, perhaps, an hour and a half of breathing time. I couldn't get out of bed and transfer to the wheelchair because the hoist is, you've guessed it, electrically powered.
Polly rang the power company and explained the situation. The outage was extremely local, affecting only a few houses around us. Our upstairs neighbour had no power but the flat above her did. The house next door was in darkness but across the road Christmas lights shone. The customer service manager at EDF was full of sympathy at my plight but regretfully informed Polly that they would not be sending an engineer out before morning. What, Polly asked, was I supposed to do when the backup battery ran out and I started turning blue? Call an ambulance, she was told. Polly dialled 999.
Within a short while an ambulance duly arrived complete with two green clad paramedic type women who quickly grasped the situation but were at a loss at what to do. They could take me to hospital where there was at least power and warmth but transferring me there would require another ambulance team to safely move me without the use of the hoist. Even incapacitated as I was this seemed a bit too much. The weather outside was treacherous and the emergency services were already stretched. The ambulance woman called the power company herself and put a flea in their ear.
By now our neighbours were anxiously hovering, alerted by the presence of the ambulance, and offering any help that they could. Then Polly had a brainwave. We could run an extension lead down from the top flat where there was electricity. Fortunately our next door neighbour was able to rummage in his company van and produce an industrial length cable which could be trailed three floors down and through our flat into our bedroom. Within a few minutes we had limited power again. My mattress began to re-inflate and my electric blanket began to warm up again. Crisis over. Or so we thought.
Polly said goodbye to the ambulance crew and apologised for having called them out. Oh no, they said cheerfully, it made a pleasant change from picking up drunk people who had slipped on the ice. They departed to fill in forms about the incident.
I'm not exactly sure what caused what happened next. I think the sudden changes in pressure, position and temperature had caused the sticky and frothy mucus in my rather abused lungs to foam into my mouth where due to the forced breaths from the ventilator I swallowed it and great mouthfuls of pressurised air. The contents of my stomach rebelled and a grim combination of semi-digested curry, mucus and medication came up in to my mouth. This would be nasty under any circumstances, but remember, my ventilator was forcing me to take regular breaths regardless of whether I was being sick at the time. I was in real danger of choking.
Polly took one look at me and came as close to panicking as she ever has with me. She made a dash for the front door and waved down the departing ambulance. Moments later the two ambulance women were back looking down at me anxiously. “Get some suction,” said one of them, and I suddenly felt like I was in an episode of Casualty. One of the crew admitted frankly they were a bit out of their depth. They took my sats (96% on the BiPap) and my blood pressure (slightly raised) and my temperature (normal) but since they didn't know what my baseline was they weren't sure how useful the information was. Still, it gave them something to do.
I kept being sick and they kept telling me not to breathe it into my lungs. It is generally agreed among medical folk that aspiration pneumonia is something to try and avoid – so I did. It wasn't easy but, as you will have gathered, I somehow managed. When there was nothing left in my stomach I finally stopped being sick. Everyone breathed a sigh of relief. Well, everyone except me; I sort of bubbled.
Once they were satisfied I wasn't going to expire the ambulance crew left to pick up more drunken ice-skaters. I drifted off to sleep leaving Polly to recover from a near nervous breakdown. “God, you're a lot of work,” I heard her mutter. Good job she loves me. The power came back on a couple of hours later. Apparently EDF relented and sent out an engineer. I woke up a few times during the night with a raging thirst but Polly would only let me sip a few drops of water for fear of me drowning or something.
I would like to thank the ambulance crew who were a reassuring presence and very patient. I would also like to thank our neighbours who rallied round and made a real difference. I am a fortunate fellow indeed to have so many people around me who are prepared to endure snow and freezing conditions to help.
This will probably be the last post before Christmas. This afternoon we are taking the boys to see Father Christmas at a local grotto and last night we took them to see Thumblina at the Charles Cryer Theatre in the village. After the events of Sunday night I'm grateful to be well enough to enjoy these seasonal experiences with them.
Merry Christmas to everyone kind enough to spend time reading this blog. I truly appreciate it. I'll try and squeeze in another post before the new year.
Seasons greetings. Until next time...
Monday, 14 December 2009
It is a law of the universe that electric wheelchairs only break down at the weekend. Stephen Hawking, in his seminal work, A Brief History of Wheelchair Related Inconvenience postulates that the relative complexity of a wheelchair multiplied by the disabled persons dependency on the chair divided by the distance a service engineer will need to travel and factored by the time any office of any person able to facilitate a repair closes will mean that a wheelchair will breakdown after 5:30pm on a Friday and before 8:30am on a Monday. The Hawking equation therefore determined that my chair broke down at 7:00pm on a Saturday.
I pressed any number of combinations of buttons to no avail. The LCD screen on the controller had a picture of a padlock on it which summed up the situation very well. Eventually we called SERCO and explained how stuck I was. We declined the offer of an appointment on Tuesday (between the hours of 8:30am and 6:00pm) and reiterated that I was very stuck. My chair, when working is a marvel of technology – when not working it is a very very heavy armchair with a substantial human male in-situ. There are rockeries with more mobility.
The problem with engineers from SERCO who, on the whole are nice, competent people, is that they do not have specialist knowledge of every model of wheelchair. It is not realistic for them to know the ins and outs of every make and my chair is very high spec and therefore relatively uncommon. As a result Polly and I did not hold out much hope when we were told that the duty emergency engineer was on his way. Still, at least there would be an extra person around to help push.
Meanwhile we ate tea and watched Stacey be voted out of the X-Factor final. We also started ploughing through the vast amount of paperwork that came with the chair. I dimly remembered reading a manual that appertained to my particular controller. Several manuals had pictures of controllers that bore no relation to the one I have, with its smug picture of a padlock displayed on the screen, but eventually, in a folder filed under U for Unlikely to be needed, we found a booklet with some details that roughly corresponded to mine.
To unlock the padlock, which we were informed was a necessary security feature, we had to move the joystick in a particular sequence of movements. No one was more surprised than me when this worked and my chair was restored to full working order. We immediately phoned SERCO to cancel the engineer. Unfortunately he was already committed and wasn't going to return to the depot without a signature on his paperwork. He duly arrived and sucked air through his teeth whilst examining the controller in a manner meant to reassure us he had seen this model before. According to him, the padlock security feature is to enable the wheelchair user the ability to lock the chair whilst they pop into a pub or an inaccessible shop. This makes perfect sense. Anyone who needs a multi-thousand pound high specification wheelchair often wants to get out of it to wander around shops or to get some liquid refreshment. He also informed us that the padlock could be activated by nearby magnets or electrical devices like mobile phones. Perhaps you can begin to see why I don't have complete faith in the abilities of SERCO engineers.
To be fair, the engineer was very gracious about being called out on a wasted mission. We signed his paperwork and promised to keep the electric wheelchair away from anything electrical. I also assured him I'd use the padlock security feature whenever I got out of the chair to go shopping. Now, if only I can work out why the bloody thing activated in the first place.
Until next time...
Thursday, 10 December 2009
There is something wonderful about sitting in a crowded school hall, searching the assembled ranks of costumed children, who are in turn searching the audience, for that spark of mutual recognition. The surreptitious wave, Sam's grin and the look of possessive joy and slight relief that daddy is there to see him perform will be a memory that forms one of those great pleasures of parenthood. He is dressed in black and white, wearing a chef's hat, and is only partially obscured by the piano. As Ned searches for the true meaning of Christmas, Sam and his band of angry chefs prove that the festive season is not all about food, with my boy delivering his one solo line, “With flour in my hair!” loudly and clearly. It is up to other parents children to dismiss toys and even Santa as being the essential element of Christmas but my attention is focussed on my child as he sings and dances his way towards the nativity. Eventually we learn that Christmas is about a baby, born in a stable and, as demanded by tradition and grandparents in the audience, Away in a Manger is sung.
Last week I trundled over to the school to see Matty in the junior school performance of Panto-Pandemonium, a witty subversion of traditional pantomime stories. Matty was a member of the vast choir that supported the big kids of year 6 who got to do all the acting. Next year Matty will be one of the big kids of year 6 and he is already angling for a major role. He lives in genuine terror that the school will change its tradition and next year the acting will be shared out amongst the years and as a result there will be less starring roles for him to audition for. Matty is determined to be an actor and sees next years Christmas show as his potential big break.
We are now well into the festive season as far as the school is concerned. Tomorrow the boys have their Christmas dinner. I may be persona non grata after Sam told his class that daddy says sprouts are the devil's food. Next week they have their class parties. Matty has to take six satsumas. I'm sending Sam with a bag of sprouts.
Until next time.
Monday, 30 November 2009
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
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
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
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
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
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
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.
Tuesday, 27 October 2009
Which is how I ended up seeing Up in 3d with Bob, his wife Antoinette and Matty and Sam. Despite a severe lack of the undead and a complete absence of grotesque killer puzzles Up is a brilliant film and neither Matty or Sam bemoaned the shortage of blood. Instead we all sat entranced, enjoying a rare thing in the two a penny world of CGI animated output, a good story, well drawn characters who ooze humour, charm and warmth, and a whole series of comic set pieces that are both funny and visually pleasing, especially in 3d. I defy anybody not to love Dug, the Golden Retriever.
When I got home with two burger-stuffed boys, way past their bedtime, I found a sightly fractious wife. Polly had been baking a cake. Now it must be said that Polly is an excellent cook and has baked countless cakes over the years. This cake, however, is a cake with baggage, a cake with history. This is the Deal family Christmas cake, a recipe handed down the generations. This is the cake that until this year my mother has made every year for as many Christmases as I can remember. A cake that is so complicated and takes so long to prepare that my mother can no longer stand to bake it. I mean that literally, mum has arthritis. The mantle has now passed to Polly. It had taken her over three and a half hours to mix and prepare. Muttering grimly about 'your family' she told me she would have to set the alarm to go off at 1:30am to take it out of the oven after its five and a half hour baking time. She swears that next year she will make a chocolate log but I'm sure she will have calmed down by next October.
At 1:30am the alarm went off and Polly staggered into the kitchen. I was asleep before she crawled back to bed. I learned in the morning that the cake needed to cool a further 40 minutes before it could be removed from the tin.
All I can say is that it is a VERY nice cake. It has to be decorated in a certain way too, but I'll mention that next time I go to the cinema.
Until next time...
Saturday, 24 October 2009
The Lantern Arts Centre is located within part of the building that is the monolithic Raynes Park Methodist Church in south London. Over the years it has evolved from an enthusiastically amateur underfunded enterprise into a slickly professional underfunded enterprise. On Friday nights they put on, or invite artists to perform, shows in their Café Studio, a smallish theatre on the 3rd floor. After much fund-raising and lobbying for grants, a few years ago they installed a lift (elevator) which finally made the centre fully accessible to all. The management at the Lantern Arts Centre are committed to inclusivity as is testified to by the huge range of shows and services they put on and provide in and around the local community.
I have ridden the lift to the Café Studio many times in the past, both as a performer and as a member of the audience, I don't have a particular fear of lifts, and this one is essentially a glass box with minimal claustrophobic potential, but even so, my heart rate goes up a little as the surprisingly fragile seeming glass door closes behind me and an electric motor starts to whine. We had sent the boys haring up the flights of stairs that created the stairwell through which the lift rose and Polly and I had entered the lift and closed the glass door behind us. Polly pushed down on the large UP button and held it down and the electric motor engaged. The tone of the electric motor was not that of a contented piece of machinery going about it's business of perpendicularly raising passengers forty or more feet into the air in a safe, reliable manner, but was rather that of a straining put-upon cantankerous piece of groaning mechanical misery. Some eighteen inches into our alarmingly juddery assent Polly removed her hand from the aforementioned UP button and we came to a halt.
People peered over banisters at the new exhibits and I wondered if they were expecting some kind of show. Then it came to me, I could be a mime trapped in a glass box! Polly pushed hopefully at the UP and DOWN buttons but to no avail. Matty and Sam looked down from on high and asked if we were stuck. We assured them it was only for a minute and their angelic little faces turned from mild anxiety to one of sensing an opportunity of freedom, so they headed for the cakes to bat their eyelashes at whoever had the misfortune to be in charge.
Meanwhile the inestimable Georgie Talbot and her husband John, joint artistic directors of the arts centre, leapt into action. John opened a panel high above us and he and colleagues turned some ratchety thing that very slowly lowered us back down to the ground floor.
Various people fiddled with the lift mechanism, trying to reset the wretched thing, but to no avail. Much to Georgie's consternation nothing worked and defeat was admitted. Her fury was heightened by the fact that the centre spends a fortune maintaining the thing and that it had been inspected only days previously. The show, however, had to go on. Fortunately, at that moment, my friend Bob arrived, and within seconds had come up with an action plan. He and I would retire to a local tavern for the duration.
By now the audience was arriving so Bob and I hung around to chat with those we knew, many of whom nodded sagely at the lift and regaled me with stories of the times it had broken down with them in it. Bob, who hates lifts and only ever goes in one with me when we go to the cinema because I can't reach buttons (and even then sort of clings spread to the wall with apparent nonchalance in case the floor drops away) swore he'd never set foot in the thing.
It was also a chance to catch up briefly with Susie, who among her many responsibilities at LAC was tonight manning the box office. Susie, a talented writer, who co-ordinates the centre's children's and youth Theatre Clubs, endures the agonizing condition Lupus, and we have worked together occasionally over the last decade or so, with Susie in particular refusing to compromise because of disability. She had written and was performing two monologues and so, eventually, left Bob and me in charge of the box office while she went to prepare. I later learned that Matty thought her 'growing up' monologue was wonderful.
Once Bob and I had escaped box office duty we made off around the corner for a drink and chat. It occurred to me Polly might want to escape during the interval and get the boys home and to bed so we didn't stay long. As it turned out her second piece was still to come so Bob nipped upstairs to video her performance for me.
Not exactly the evening I was anticipating, but not bad.
Until next time...
Thursday, 22 October 2009
Sunday arrived and we arrived at the church as a family only a few minutes late. Before I had even had time to warm myself next to one of the iron radiators we were being invited to the front to address the congregation.
I have been in this situation many times in the past but not for a few years. A hundred or more faces watched me expectantly. I flicked the controller on my wheelchair and levitated into the air. That was better, I could now see and be seen. It also killed a few seconds. Polly took the microphone and spoke with her usual wit and assurance about her faith and how it enabled her to cope with some of the extremely harrowing situations she faces with her work as a clown doctor. All well and good but it was upping the bar and I was acutely aware that anything I said was going to sound trite or glib or worse, hypocritical.
All to soon Polly finished her bit and Stephen turned his vicarly attention to me. After giving the congregation a brief run down on my writing and theatre background and doing a great job plugging this blog he asked me what my faith meant to me. Good question. It was one of those situations when you open your mouth to talk and haven't got a clue what's going to come out.
If you've been reading this blog for any length of time you will be aware that if Jesus wants me for a sunbeam then he has grossly misjudged the weather. I admitted that I had 'issues' with God, which seemed to strike a chord with a significant number of those listening judging from the wry chuckle that followed. I went on to talk a little about the many good things in my life and left it to them to decide whether I attributed those to my faith or not. I did say that my faith has formed the backdrop to my life for the last 35 years or so, which however I feel about that sometimes, is absolutely true.
As ever when I raise matters of faith on this blog I am acutely aware that I am disappointing or disillusioning many of my readers, especially my many Christian friends who would, no doubt, prefer something more unequivocal from me. Equally I know for a fact that a huge number of my readers are atheist and hold no truck whatsoever with anything pertaining to faith. They say you can't please all of the people all of the time, but it would be nice to please a few people some of the time. So, for the tiny number of readers who lack certainty in matters of personal faith, this post is for you. As you dangle over the precipice of uncertainty you can at least be comforted by the knowledge that somewhere nearby I am hanging on grimly with you. Not a great deal of comfort, I realise, but at least we're not alone.
Until next time.
Wednesday, 14 October 2009
At one point a demonstration of the blowing of a Shofar (a rams horn) brought about my favourite comment of the afternoon. “Bring me the anti-bacterial wipes!“ Such is a time of the times.
Oh, and in case you are wondering, the boys and I gave Polly perfume (Flower by Kenzo), some books, including a replacement copy of Delia's Complete Cooking Course, a pair of boots (not wellies), and a set of allen keys.
This morning we had a visit from a number of people from the housing department who came to look at our flat with a view to extending it. It took them less than thirty seconds to conclude that unless we open a portal to another dimension our home is as big as it will ever be. They've all gone away now to see if they can think of anything else.
Interestingly, on the corner of our street a new housing development is to be built. To mollify the local planning department the developers promised to build a disabled accessible house on the site. Perfect! But then, you will be astonished to hear, they had to make some changes to the plans and the house morphed into a small flat once the contract was signed and sealed. Almost like magic.
And finally, Matty was regaling Polly at breakfast with details of a dream he had had about slipping into another dimension and having to live dressed as a teddy bear. Sam, not to be out done, announced that he too had dreamed. He had been stung by a bumble bee and slipped into another Dalmatian.
Until next time. . .
Friday, 9 October 2009
Having my chair back is a relief in many ways. Almost instantly several areas of pain that I'm so used to are gone with such suddenness I am caught by surprise. Simply being able to adjust my position in a near infinite number of ways keeps me both comfortable and entertained.
Of course, life being life, and my life in particular, not everything goes completely smoothly. For example, Polly ate the table leg. (I'm so tempted to leave that sentence hanging.)
The new wheelchair, what with all its multi-function bits and bobs, is a little higher than the old one. This is not a problem, except that it wouldn't fit under our dining table. This meant that the already difficult task of having a meal was further complicated by me not being able to get close enough to the table to eat. The solution? Raise the table. You can buy 'table-risers' from various disability inclined outlets but we were uncertain exactly how high the table needed to go so decided to experiment using household objects. Eventually we discovered the ideal height the table needed to go up was that of a 220g tin of Heinz baked beans. Fortunately we had a 4 pack of these little tins and the table problem was sorted.
Until, that is, the wheelchair was taken away for repair and we had to lower the table once more because now it was too high.
The new wheelchair, now repaired and restored to us, means we needed to re-raise the table. “Fetch the baked beans,” I cried. 3 tins of beans were produced. “Er. . . Where's tin number four?" Polly looked me straight in the eye, daring me to complain. “I ate them for my supper last night when I got in from work. I hadn't eaten since 7:30 that morning and it was gone 9: 00 at night and I was too tired to knock up a non-baked bean orientated meal. Any problem with that?” None whatsoever. You soon learn not to argue with a tired, hungry clown. The table, even on 3 legs, is more stable.
Until next time.
Saturday, 3 October 2009
Talking of breath – neat segue, hey? - I'm making progress with the lung infection again. I was doing very well but on Thursday took a few steps backward when my temperature went up again. Dr Toosy has switched me to Ciprofloxacin and given me some Budesonide nebulisers. The main problem is that the whole process is so exhausting. It's not been helped by having my comfy wheelchair whipped away. My posture is not so good in the old one and the base of my right lung gets compressed. On Friday the community physiotherapist came to beat me and shake me. If she wasn't so nice I could really go off her.
That's all for now. Until next time.
Wednesday, 30 September 2009
I'll let you know what happens.
Monday, 28 September 2009
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.
Friday, 25 September 2009
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.
Tuesday, 22 September 2009
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.
Monday, 21 September 2009
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.
Tuesday, 15 September 2009
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.
Friday, 11 September 2009
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.
Monday, 7 September 2009
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. .
Tuesday, 1 September 2009
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. . .
Monday, 24 August 2009
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.
Friday, 7 August 2009
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.
Saturday, 1 August 2009
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.
Tuesday, 28 July 2009
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.
Friday, 24 July 2009
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
Sunday, 19 July 2009
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.
Saturday, 11 July 2009
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.
Monday, 6 July 2009
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.