Another reason for my summer silence was that I turned an unnatural colour. It was August, a week before we were due to go on holiday to Wales and the day before we were going to see the play Anne Boleyn at the Globe Theatre. Polly came home from work and asked me if I knew I was a shade of yellow. I pointed out that she was wearing a pair of lemon yellow shorts and that the sun was just reflecting off them. Yes, said Polly dryly, that's probably it, but just in case we'll pop up to the hospital on the off chance that it's not caused by my trousers.
Many hours later a doctor was trying to admit me to St Helier hospital because she was a bit concerned about some markers in my blood. After some tense negotiations she let me go home on the understanding that I returned first thing in the morning for further tests. But we have tickets to see Anne Boleyn at Shakespeare's Globe Theatre, I wailed. The doctor just sighed and said "you've gone yellow, Mr Deal. You have jaundice. Don't you think it's in your own best interest to find out why?"
The next day, despite my best efforts, they admitted me. I tried to explain that I am ill-suited to hospitals but the consultant dismissed my concerns with an airy wave of a manicured hand. "The pretty little nurses will look after you," he didn't quite say but might as well have done. The pretty little nurses were slightly less confidant when faced with my BiPap, wheelchair and need for hoisting, a profiling bed and an air-mattress. They looked at Polly and said, "You won't be leaving, will you?"
They wanted to stick me in a scanner so they could look at my liver but soon realised that this would be complicated in the extreme because I can't lie flat on my back without suffocating. The slightly less confident consultant agreed to try an ultra-sound, blithely unconcerned that the technician would have to achieve this while I stayed in my wheelchair. Unsurprisingly the results were inconclusive.
I spent an unhappy night plugged into a drip feeding some kind of antibiotic into my vein. The preceding two hours it had taken to get me in to the bed convinced the nursing staff and the more junior doctors that I would be better off at home since there was not an awful lot they could actually do for me. The consensus was that a gall stone had broken up and passed through my liver but since they weren't about to risk giving me a general anaesthetic so they could have a poke around they couldn't be 100% certain. Eventually the almighty consultant was persuaded by his underlings that I should be allowed to go home on condition that my GP organised regular blood tests. I fled to the car park still wearing my hospital gown.
Whatever was going on in my liver took a while to clear up because the markers in my blood that concerned the doctors remained stubbornly high for what seemed like a long time. I suffered some minor discomfort and felt a bit run down, missed a play, but, on the whole, reckon I got off relatively lightly.
Until next time.
Showing posts with label Disabled. Show all posts
Showing posts with label Disabled. Show all posts
Monday, 4 October 2010
Tuesday, 28 September 2010
Return Of The Blogger
I'm back.
Thank you for your patience. It's been a long, and for the most part pleasant, summer and I feel I owe an explanation for my absence from the blogosphere for it's entirety. Way too much has happened for me to cover in one post but I'll give a brief summary here and expand on details as time and my typing allow.
I left you back in June because the long decline in my dexterity finally reached a kind of tipping point and my typing became so unreliable, erratic and difficult to perform that anything otter than essential email communication became all but impossible. I have not yet found a satisfactory remedy for this but I have purchased an iPad which, with it's superior touchscreen keyboard, helps a little. It then took more time to find a suitable, but hugely expensive, stylus with which to poke at it with because my fingers are no longer up to the job. I missed blogging but the longer I left it the more things kept happening and less I felt able to catch up. Consider this post a kind of bull being taken my the horns sort of thing. I'm getting back in the saddle and mixing metaphors once more.
You may remember that long ago we started the long process of being rehoused which resulted in a slightly surreal meeting with, and letter from our MP, Tom Brake. (See Cometh The Man back in March.) Well the wheels ground awful slow but we were at last notified of a new development being built that includes wheelchair accessible accommodation complete with through lifts to move users up and down between floors. We were told, unofficially, that we were 'pencilled in' for one of these desirable properties. For weeks and then months we drove past the development and watched the walls going up and the roof being tiled. At least one extra bedroom was on offer as well as an extra bathroom and more space generally. All ideal. A few weeks ago an Occupational Therapist arrived to discuss our specific needs; hoists, bathroom adaptations and the like. He took notes, measured the wheelchair and then disappeared back to OT Land. Days passed. Then we received a phone call from him to say that lift that was being installed was too small to take my wheelchair. The lift shaft had been built into the fabric of the house and it was too late to change it. We wouldn't be moving after all.
We contacted Tom Brake again and stiff letters are being written but in the current climate of cuts it seems unlikely that new housing will get built in the foreseeable future. It seems a pity that no one thought to wonder what kind of wheelchairs might or might not fit in the house before they built them. I suppose they didn't want to waste precious space.
I will call it a day for now. Next time I'll tell you how I went yellow in August and ended up in hospital. Thanks for reading.
Until next time. (Soon, I hope.)
Thank you for your patience. It's been a long, and for the most part pleasant, summer and I feel I owe an explanation for my absence from the blogosphere for it's entirety. Way too much has happened for me to cover in one post but I'll give a brief summary here and expand on details as time and my typing allow.
I left you back in June because the long decline in my dexterity finally reached a kind of tipping point and my typing became so unreliable, erratic and difficult to perform that anything otter than essential email communication became all but impossible. I have not yet found a satisfactory remedy for this but I have purchased an iPad which, with it's superior touchscreen keyboard, helps a little. It then took more time to find a suitable, but hugely expensive, stylus with which to poke at it with because my fingers are no longer up to the job. I missed blogging but the longer I left it the more things kept happening and less I felt able to catch up. Consider this post a kind of bull being taken my the horns sort of thing. I'm getting back in the saddle and mixing metaphors once more.
You may remember that long ago we started the long process of being rehoused which resulted in a slightly surreal meeting with, and letter from our MP, Tom Brake. (See Cometh The Man back in March.) Well the wheels ground awful slow but we were at last notified of a new development being built that includes wheelchair accessible accommodation complete with through lifts to move users up and down between floors. We were told, unofficially, that we were 'pencilled in' for one of these desirable properties. For weeks and then months we drove past the development and watched the walls going up and the roof being tiled. At least one extra bedroom was on offer as well as an extra bathroom and more space generally. All ideal. A few weeks ago an Occupational Therapist arrived to discuss our specific needs; hoists, bathroom adaptations and the like. He took notes, measured the wheelchair and then disappeared back to OT Land. Days passed. Then we received a phone call from him to say that lift that was being installed was too small to take my wheelchair. The lift shaft had been built into the fabric of the house and it was too late to change it. We wouldn't be moving after all.
We contacted Tom Brake again and stiff letters are being written but in the current climate of cuts it seems unlikely that new housing will get built in the foreseeable future. It seems a pity that no one thought to wonder what kind of wheelchairs might or might not fit in the house before they built them. I suppose they didn't want to waste precious space.
I will call it a day for now. Next time I'll tell you how I went yellow in August and ended up in hospital. Thanks for reading.
Until next time. (Soon, I hope.)
Wednesday, 5 May 2010
Can He Talk?
I took the boys to their trampoline lesson last Friday at our local leisure centre. The lesson is held in a vast, echoing hall with four trampolines in one corner and a couple of badminton courts scattered around. While the children await their turn for their one-to-one coaching they tend to run around the hall chasing a ball or playing tag, shrieking at a pitch that seems to resonate with the with the natural frequency of the hall and at a volume to make your ears bleed.
In the course of this running around between bouncing Matty collided with another child and I looked up from my book to see him sitting on the floor nursing his left leg. A group of children had gathered round and one of the mothers had come over to check that there was not too much damage done. I put down my book and took up my parental responsibility and wheeled across the cavernous hall towards the group. As I approached I could see that Matty was going to live and I cancelled the explanation I'd mentally started rehearsing for Polly about how my eye had never left him. The mother looked up to assure me that there was no serious damage done. Just then a little boy said loudly and clearly, “ Mum, mum, I think that man wants something.” The mother replied “ Yes, he's come to check that Matty is okay.” The boy looked puzzled. “Why would he do that? “ The mother flashed me an apologetic smile. “Because he's Matty's daddy.” “Is he? What really?” The boy looked at me with open curiosity and then checked with his mother. “Are you sure?” “Yes,” hissed his mother looking at me and mouthing “Sorry.” The boy continued to look me over. “Can he talk?” I fixed him in the eye and said firmly, “Yes, he can.” “Oh,” said the boy, “that's all right then.” He then wandered off to play. His mother, obviously wishing the polished floor would open up beneath her, could only mouth “Sorry” again.
Until next time.
In the course of this running around between bouncing Matty collided with another child and I looked up from my book to see him sitting on the floor nursing his left leg. A group of children had gathered round and one of the mothers had come over to check that there was not too much damage done. I put down my book and took up my parental responsibility and wheeled across the cavernous hall towards the group. As I approached I could see that Matty was going to live and I cancelled the explanation I'd mentally started rehearsing for Polly about how my eye had never left him. The mother looked up to assure me that there was no serious damage done. Just then a little boy said loudly and clearly, “ Mum, mum, I think that man wants something.” The mother replied “ Yes, he's come to check that Matty is okay.” The boy looked puzzled. “Why would he do that? “ The mother flashed me an apologetic smile. “Because he's Matty's daddy.” “Is he? What really?” The boy looked at me with open curiosity and then checked with his mother. “Are you sure?” “Yes,” hissed his mother looking at me and mouthing “Sorry.” The boy continued to look me over. “Can he talk?” I fixed him in the eye and said firmly, “Yes, he can.” “Oh,” said the boy, “that's all right then.” He then wandered off to play. His mother, obviously wishing the polished floor would open up beneath her, could only mouth “Sorry” again.
Until next time.
Saturday, 6 March 2010
The Boy In The Bubble
On Wednesday I was finally admitted to the Royal Brompton Hospital in London for them to try and address the problems I've been having with my blood gasses and with the BiPap alarm going off umpteen times a night. I was poked and prodded by a doctor who also (on the second attempt) took blood and analysed it. My CO2 levels are too high and as a result my blood is turning acidic, which is not as cool as it sounds. Time to take action before I turn into a blood-burning super-villain.
I was given a room on Foulis ward with an en suite bathroom. Unfortunately the en suite bathroom was not wheelchair accessible. Not a problem I was assured, and a commode was wheeled in. Deep deep joy. The room came with a fully working TV and, to my relief, wi-fi internet connectivity. It was also alarmingly chilly. Polly closed the open window.
The Brompton is a great hospital but no hospital is ideally suited to my needs. Three nurses spent nearly an hour getting me into bed that night. It was then that it was realised that the radiator wasn't working. Nurses piled blankets on me until I could no longer move at all. It was a very long, very cold night.
When at last the morning came I was sleep deprived and shivering and not in the mood for what was to come. Four nurses took another hour to get me up, hoisted to the commode, discovered (I already knew this but it was a revelation to the nurses) that I cannot balance on a commode, and finally transferred to my wheelchair. I'll spare you the details of the indignity of the saga of getting my trousers on. Suffice to say that in the end we did it my way.
Later we got to the heart of the reason I was there. Steve, the ventilator man, came to experiment on me. The problem, it appeared, was that the pressurised air was leaking, thus I was not getting the full benefit of the BiPap and also that the alarm was going off to alert me to this fact. The solution was a new mask. Steve was very excited, he had a radical new product to try. “It's a bit unusual,” he warned me. It was. Imagine a diving helmet crossed with a bin-liner held on to your head by padded straps that pass under your armpits to stop it blowing off. When I tried it, sitting in my wheelchair, it was an interesting experience, rather like being in your own person bubble (albeit a noisy one). Polly said I looked like Sandy the squirrel from Sponge Bob Squarepants. The problem started when they wanted me to try it lying down. When Steve came to fit it, with me balancing on the bed, I freaked out. The bubble became that plastic bag your mother told you not to put over your head when you were a child. I couldn't breathe, which considering its purpose was pretty ironic.
Next we tried a mask which fitted into my mouth like a scuba divers breathing apparatus. This time the problem was that if you tried to speak or swallow the air was blasted under pressure into your stomach which blew up like a balloon. I lasted about 15 seconds.
Finally Steve produced a variation of the nasal mask I already use. Bingo. I agreed to give this one a go that night. I was told a sleep study had been arranged for Saturday night to assess how effective the mask was going to be. The thought of another 3 nights of mobile hoists and commodes was too much. I begged Steve to bump me up the list and he surveyed my room and took mercy on me. He said he would slip me onto the end of the list for that nights tests.
Getting to bed that night was a debacle.. The nurses were brilliant but I was exhausted and nothing went quite right. It seemed to take hours and I was at the point of taking out a contract on the life of whoever designed the mobile hoist I was being swung around on like a human conker. When, eventually, I was lying in approximately the right position, a technician came in and attached a probe to my earlobe. At least someone had come and mended the radiator and I only needed four blankets. The new mask worked beautifully though and the BiPap alarm didn't go off once.
In the morning two nurses came to get me up. Half an hour later they went to get two more. Much much later the consultant came in with the results of the sleep test. (You know you are getting old when even the senior consultants look like they are fresh out of school.) I held my breath (so to speak) as he held up a print out and pointed to various lines tracing across the page. O2 saturation was at 100% all night. More significantly my CO2 levels remained consistently low throughout. “This,“ said the consultant, “is about as good as it gets. Excellent. You should begin to feel the effects over the next few days.” And with that I was released back into the wild.
When Polly had come to visit me the previous day she had stopped in the corridor to stare briefly at one of the other patients. When she came into my room she said, “Isn't that. . . You know. . . Oh, thingumajig from that show. 1970s. . . American. Very famous.” I peeked out of my room and, do you know what, she was right. It was thingamy from that cop show. He was in a private room and got to drink coffee from a cafetiere rather than the instant muck I was served. From then on I couldn't get that gooey song he sang out of my head.
I'm home now and have just had a good nights sleep. The BiPap alarm didn't go off once. Result.
Until next time. . .
I was given a room on Foulis ward with an en suite bathroom. Unfortunately the en suite bathroom was not wheelchair accessible. Not a problem I was assured, and a commode was wheeled in. Deep deep joy. The room came with a fully working TV and, to my relief, wi-fi internet connectivity. It was also alarmingly chilly. Polly closed the open window.
The Brompton is a great hospital but no hospital is ideally suited to my needs. Three nurses spent nearly an hour getting me into bed that night. It was then that it was realised that the radiator wasn't working. Nurses piled blankets on me until I could no longer move at all. It was a very long, very cold night.
When at last the morning came I was sleep deprived and shivering and not in the mood for what was to come. Four nurses took another hour to get me up, hoisted to the commode, discovered (I already knew this but it was a revelation to the nurses) that I cannot balance on a commode, and finally transferred to my wheelchair. I'll spare you the details of the indignity of the saga of getting my trousers on. Suffice to say that in the end we did it my way.
Later we got to the heart of the reason I was there. Steve, the ventilator man, came to experiment on me. The problem, it appeared, was that the pressurised air was leaking, thus I was not getting the full benefit of the BiPap and also that the alarm was going off to alert me to this fact. The solution was a new mask. Steve was very excited, he had a radical new product to try. “It's a bit unusual,” he warned me. It was. Imagine a diving helmet crossed with a bin-liner held on to your head by padded straps that pass under your armpits to stop it blowing off. When I tried it, sitting in my wheelchair, it was an interesting experience, rather like being in your own person bubble (albeit a noisy one). Polly said I looked like Sandy the squirrel from Sponge Bob Squarepants. The problem started when they wanted me to try it lying down. When Steve came to fit it, with me balancing on the bed, I freaked out. The bubble became that plastic bag your mother told you not to put over your head when you were a child. I couldn't breathe, which considering its purpose was pretty ironic.
Next we tried a mask which fitted into my mouth like a scuba divers breathing apparatus. This time the problem was that if you tried to speak or swallow the air was blasted under pressure into your stomach which blew up like a balloon. I lasted about 15 seconds.
Finally Steve produced a variation of the nasal mask I already use. Bingo. I agreed to give this one a go that night. I was told a sleep study had been arranged for Saturday night to assess how effective the mask was going to be. The thought of another 3 nights of mobile hoists and commodes was too much. I begged Steve to bump me up the list and he surveyed my room and took mercy on me. He said he would slip me onto the end of the list for that nights tests.
Getting to bed that night was a debacle.. The nurses were brilliant but I was exhausted and nothing went quite right. It seemed to take hours and I was at the point of taking out a contract on the life of whoever designed the mobile hoist I was being swung around on like a human conker. When, eventually, I was lying in approximately the right position, a technician came in and attached a probe to my earlobe. At least someone had come and mended the radiator and I only needed four blankets. The new mask worked beautifully though and the BiPap alarm didn't go off once.
In the morning two nurses came to get me up. Half an hour later they went to get two more. Much much later the consultant came in with the results of the sleep test. (You know you are getting old when even the senior consultants look like they are fresh out of school.) I held my breath (so to speak) as he held up a print out and pointed to various lines tracing across the page. O2 saturation was at 100% all night. More significantly my CO2 levels remained consistently low throughout. “This,“ said the consultant, “is about as good as it gets. Excellent. You should begin to feel the effects over the next few days.” And with that I was released back into the wild.
When Polly had come to visit me the previous day she had stopped in the corridor to stare briefly at one of the other patients. When she came into my room she said, “Isn't that. . . You know. . . Oh, thingumajig from that show. 1970s. . . American. Very famous.” I peeked out of my room and, do you know what, she was right. It was thingamy from that cop show. He was in a private room and got to drink coffee from a cafetiere rather than the instant muck I was served. From then on I couldn't get that gooey song he sang out of my head.
I'm home now and have just had a good nights sleep. The BiPap alarm didn't go off once. Result.
Until next time. . .
Monday, 15 February 2010
Still Bumped
In case you were wondering, I'm not in the Royal Bromton Hospital. I was bumped again, presumably by a very sick person whose need was deemed greater than mine. Because this week is half-term and the boys are off school I declined the offer to wait in all week on the off-chance that a bed would become available. Apparently we are going to try again in the first week of March, by which time I will be considered a priority.
Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.
Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.
My hand is hurting so I'll have to stop writing now. Until next time...
Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.
Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.
My hand is hurting so I'll have to stop writing now. Until next time...
Thursday, 21 January 2010
Still Ticking Along
Yesterday I made the trip to Kings Hospital for the specialist FSH clinic with Dr Rose and his team. Once we had negotiated the near impossible task of parking within seven miles of the main entrance and then found our way through the maze of corridors to the Therapy Suite we were greeted by an enthusiastic volunteer who presented us with a pile of questionnaires designed to reveal my innermost concerns regarding my condition. No sooner had I started answering questions about my sleep patterns than we were whisked off to the cardiac clinic for an ECG.
The woman who performed the ECG was one of those people who wants to tell you all about someone they know who is in a wheelchair. In this case we were regaled with the tale of her nephew who had been run over by a drunken vet in Ireland, paralysed and then mugged by four Polish men in an alleyway in Dublin of his Christmas bonus. I think the subtext was that I'm lucky to only have Muscular Dystrophy.
A little later we squeezed in to a consulting room with Jo, the physiotherapist, Chris, a post-doctorate researcher studying MD, and Dr Rose himself. The purpose of the consultation was to review progress since the last one six months a go and to anticipate what was going to be required in the future. Everyone admired the super-duper wheelchair which they had been instrumental in getting funding authorised for and bemoaned the lack of progress regarding our housing situation. We discussed various problems I've been having with my hands and everyone looked at my toe. I was rather alarmed by their reaction to it. Words like 'tissue viability' were used. I was firmly told to get my GP to look at it.
Various technological ideas were mooted to help with my increasing difficulties with communication and I'm being referred to the appropriate specialists.
On our journey home I found myself in reflective mood. These sessions are of immense value but they force you to confront the reality of the situation. My condition is degenerative and, in reality, this means I am forever playing catch up with myself, compensating for physical abilities lost forever. I am not a particularly 'head-in-the-sand' type person but sometimes anticipating the future is difficult. Sometimes it makes me want to pick a fight with four Polish men in an alleyway. Mostly though it focuses my attention on what needs to be done so that my quality of life remains as spectacularly high as it is. I'm not exactly looking forward to some aspects of what is to come but, all things considered, I'd rather know and be prepared than be caught by surprise and left wallowing. You can't anticipate every change but some are inevitable and, as such, forewarned is forearmed. I'll drip feed you the details as and when they occur.
I'm mentally preparing myself for what I hope will be a very brief stay at the Royal Brompton Hospital next week while Dr Simonds and her team try to get a handle on my blood gases by fiddling with the BiPap overnight. My beloved is so distraught at the thought of my absence that she has arranged for a 'girls night in' with a whole coterie of friends to help her cope emotionally.
If I can get a Wi-Fi signal in my ward I'll blog you from there. Until then, thank you for reading.
The woman who performed the ECG was one of those people who wants to tell you all about someone they know who is in a wheelchair. In this case we were regaled with the tale of her nephew who had been run over by a drunken vet in Ireland, paralysed and then mugged by four Polish men in an alleyway in Dublin of his Christmas bonus. I think the subtext was that I'm lucky to only have Muscular Dystrophy.
A little later we squeezed in to a consulting room with Jo, the physiotherapist, Chris, a post-doctorate researcher studying MD, and Dr Rose himself. The purpose of the consultation was to review progress since the last one six months a go and to anticipate what was going to be required in the future. Everyone admired the super-duper wheelchair which they had been instrumental in getting funding authorised for and bemoaned the lack of progress regarding our housing situation. We discussed various problems I've been having with my hands and everyone looked at my toe. I was rather alarmed by their reaction to it. Words like 'tissue viability' were used. I was firmly told to get my GP to look at it.
Various technological ideas were mooted to help with my increasing difficulties with communication and I'm being referred to the appropriate specialists.
On our journey home I found myself in reflective mood. These sessions are of immense value but they force you to confront the reality of the situation. My condition is degenerative and, in reality, this means I am forever playing catch up with myself, compensating for physical abilities lost forever. I am not a particularly 'head-in-the-sand' type person but sometimes anticipating the future is difficult. Sometimes it makes me want to pick a fight with four Polish men in an alleyway. Mostly though it focuses my attention on what needs to be done so that my quality of life remains as spectacularly high as it is. I'm not exactly looking forward to some aspects of what is to come but, all things considered, I'd rather know and be prepared than be caught by surprise and left wallowing. You can't anticipate every change but some are inevitable and, as such, forewarned is forearmed. I'll drip feed you the details as and when they occur.
I'm mentally preparing myself for what I hope will be a very brief stay at the Royal Brompton Hospital next week while Dr Simonds and her team try to get a handle on my blood gases by fiddling with the BiPap overnight. My beloved is so distraught at the thought of my absence that she has arranged for a 'girls night in' with a whole coterie of friends to help her cope emotionally.
If I can get a Wi-Fi signal in my ward I'll blog you from there. Until then, thank you for reading.
Wednesday, 23 December 2009
Blackout - Call 999
I feel sufficiently recovered to tell you about the events of Sunday night. Those of a nervous or sensitive disposition should skip this post and find something nice to do like decorating a pine tree.
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...
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...
Tuesday, 10 November 2009
A Long Dark Midnight Snack Of The Soul
On Saturday Paul and Darren (also known as Rock God and Bass Bin) pulled the hay from their hair and smartened themselves up to make the trip east to the big city and to visit me. As ever I feigned delight at seeing them and we soon fell into a decades old pattern of abuse and nostalgia. Having known each other since infancy we have a lot of nostalgia between us.
Paul, when not playing deafeningly loud rock music in dozens of west country pubs and music venues, works as an administrator in the beloved NHS where he is a highly valued, well motivated and appreciated member of a dedicated team. Or as he puts it - “Just because you're essential doesn't mean you're important.”
Darren runs his own company called Project Link where he oversees the building of refrigeration storage unit type thingies. In a very real sense he is a fridge magnate.
It was great to see them both again, even if it meant I missed a fireworks party round at Catherine and Stewart's home. But as Cath told me at the school gate when I was rounding up the boys from their educational duties, I can see them any time. I then realised I hadn't seen them in ages, what with chest infections, bad backs, and sheer bone-idleness. Then I felt guilty.
I'm was feeling exceedingly emotionally frail yesterday due the mother of bad nights I had had. Usually I fall asleep quite easily and when I don't I have certain mental processes that normally are effective. Failing those, I just read some more. No problem. That night nothing worked. I don't normally get stressed about the odd night of insomnia; after all, it's not as if I have anything too critical to do the next day. But as the night dragged on and on I began to feel trapped. All I wanted to do was get up, wander about for a few minutes, and perhaps make myself a drink. Of course I couldn't. Getting up for a few minutes would take about fifteen minutes and then another ten or so to get back in to bed. Not to mention the time it would take for the ambulance to arrive if I tried to make a hot drink. The trouble was I can remember being able to do those things. I can remember making my own hot drinks and carrying them safely to a table. I can remember just getting out of bed because I had forgotten something. My brain, on Sunday night, kept telling my body to just get on with it and my body just laughed. I became increasingly aware of all the things I can't physically do any more, which at 3 in the morning is a very dark place to be, both literally and figuratively. (Well not literally actually. Our bedroom is anything but dark, what with the little green light from the ceiling hoist, the orange battery charger light, the red bedside clock, the varying green light on the ventilator, the hoist power supply light and, of course, the ubiquitous sodium orange glow of urban living that leaks through the curtains. Sometimes I think we should relocate the room to Blackpool.)
I am perfectly aware that it was sleep deprivation that was behind my long dark midnight snack of the soul. Once the thought was in my head I couldn't switch it off. I lay there feeling trapped. Of course, it wasn't sufficient for me to suffer alone. My occasional gentle shuffling eventually woke the light of my life who was full of sympathy (the first few times). Apparently me turning a small light on to read by in the middle of the night occasionally can be a little bit annoying. (Who knew?)
I survived, of course, although, for some reason, Polly was a little bit tetchy the next day. I'm not naturally given to navel-gazing self pity (unless I'm writing this blog) so I found the experience a bit disconcerting. Even worse, Polly, who habitually reads this over my shoulder while I write, in case I malign her in any way, became all upset when she read I felt trapped. “What do you mean, trapped?” she demanded. “Trapped in a loveless marriage?” “What? No!” I answered, genuinely confused. “Oh, that's okay then,” she said, somewhat mollified. “I was just checking.” Then she added, “You need to get some fresh air.” Which is why I ended picking up the boys from school, meeting Cath, and feeling guilty of friendship neglect. Who says life has no symmetry.
End of ramble. Until next time.
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, 9 October 2009
Polly Ate The Table Leg
As this blog cruises past entry number 200 (at How To Be An Inspiration anyway) I have news. My new rinky-dink, super-duper wheelchair is back and working. What's more, they have removed the inhibitor that stopped me going fast when the chair is tilted back. This means I can whiz a long at speed and in comfort, which is exactly what I did last night when I careened down to the village to buy some chips for supper. There was a small sensation in the chip shop when I raised the chair up and up to the high counter and handed over the money.
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.
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.
Monday, 28 September 2009
The Blue Box
I am feeling so much better that I am beginning to wonder what all all the fuss was about. My temperature is down to normal and the infection seems to have gone. There is some residual gunk and coughing but it is as nothing compared to last week. It will take another week or so before I'm back to what passes as normal for me but I can live with that.
I would certainly have ended up on a respiratory ward at St Helier or the Brompton Hospital had it not been for one particular piece of kit. At times of crisis our home can resemble a reasonably equipped emergency facility what a BiPap ventilator, a nebuliser, ceiling hoists, profiling bed, air mattress, Oxygen, a drugs cabinet with a significant street value, and a blue box the size of a large bread-bin, known in our home as 'the cough machine', but more technically, by my consultant at least, as a Cough Assist Mechanical Insufflator-Exsufflator.
The Cough Assist Mechanical Insufflator-Exsufflator is a genuinely life saving bit of tech. Without it I would either be dead or on permanent ventilation. The machine works by clearing secretions by gradually applying a positive pressure to the airways and then rapidly switching to negative pressure. Apparently the rapid shift in pressure produces a high expiratory flow, simulating a natural cough. The reality is more akin to having someone Dyson your lungs on full power. The effect is unsettling and uncomfortable but infinitely preferable to hours of ineffectual hacking coughs that simply exhaust you, or, sessions of chest pounding physiotherapy that induce near psychopathic hatred of the person pummelling you.
Way back in 2000 I was very ill with Pneumonia resulting as a complication from Pancreatitis. I was in intensive care and high dependency wards for months and for most of the time had a tracheotomy. A tracheotomy, for those unfamiliar with the procedure, is where someone, preferably a doctor, makes a hole in your neck and feeds a tube into your lungs for air to be drawn through, or, as in my case, for someone to stick a suction tube in and vacuum your lungs for gunk. Having a nervous F2 wielding a scalpel at your throat while you are passing out from lack of Oxygen rates pretty low on my list of things to do again. The advantage of the cough machine is that it is totally non-invasive. It removes secretions without the need for someone sticking a plastic straw through an unnatural orifice in your neck. I'm not sure how much such machines cost but they must be cheaper than spending days, weeks or months in hospital.
Even today, when I am feeling so much better, I have already used the blue machine twice. Once again I am grateful to be living in a country with a national health service that provides such equipment free at the point of need.
In the light of all above, it might seem churlish to moan about another freely provided piece of absolutely necessary kit, but this morning, just at a critical juncture in the preparation for a shower, my new multi-thousand pound, state-of-the-art, rinky-dink wheelchair stopped working. The control panel LCD screen simply states there is a system error and the thing refuses to budge. Fortunately, the ever unreliable Serco, have failed to collect my old wheelchair and so I am back in that until an engineer with a degree in computer science can get here tomorrow. I have had the new chair ten days, most of those I've been too ill to do anything other than sit, so I doubt the problem is overuse. Mind you, I wouldn't put it past Matty to have reprogrammed it to play Marvel Ultimate Alliance 2.
Until next time.
Monday, 21 September 2009
How To Be Sick And Stupid
Thursday evening: start to feel a bit rough.
Thursday night: Very hot, coughing.
Friday morning: ill. Nasty green stuff evident in lung. Phone the good doctor Toosy, who must have groaned inwardly. He decides not to mess around and prescribes anti-nasty green stuff-biotics and steroids. Take Paracetamol. Use Salbutamol nebulisers. Very anxious about something.
Late Friday morning: new wheelchair arrives with accompanying engineer and physiotherapist. . Too exhausted to be excited. Will write about chair soon.
Friday afternoon and evening: miserable.
Friday night: coughing, hot, sweaty, anxious.
Saturday: sleep until 3pm. Spend rest of day bravely rallying. Eat a little risotto. Go to bed. Have taken decision. Sleep.
Sunday morning: if you are a doctor, especially my doctor, stop reading now. Went to O2 arena in Greenwich to see Ben Hur – Live. It's our anniversary this week and Polly had booked it a while ago. I sooooo wanted to see it. Fabulously spectacular, will write about it soon. Drove home over every bloody speed bump in South London.
Sunday evening: pay for earlier stupidity. The whole going to bed thing a ghastly, messy, embarrassing disaster. Apologise to carers.
Monday morning: exhausting get up. Still getting used to new wheelchair. Drugs, nebulisers and cough-assist machine. Decide to update blog.
More soon, assuming I live. Bye.
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.
Friday, 11 September 2009
Faster Than A Speeding Snail
Yesterday I had a fitting for my new wheelchair. Yes, it's the kind of wheelchair that needs fitting. Mind you, it also the kind of wheelchair that requires an engineer and a physiotherapist to explain how it works. It has so many configurations I began to think piloting a Harrier Jump-Jet would be simpler. The controller has more modes and computing power than Deep Thought.
The chair is amazing. Thanks to a grant from the Joseph Patrick Trust I have been able to have a seat-riser fitted which allows me to rise up to my standing height. The seat tilts as my current seat does, but in addition the back-rest moves independently. Each of the foot-plates can be adjusted at the press of a button. As I played with the controller I found that I could configure the seat so that for the first time in years I actually felt comfortable. The expression of relief on my face made Polly feel quite emotional. Little details like calf supports and silicon gel covered armrests add to the degree of comfort. Even the head-rest is infinitely adjustable.
Of course, this being me, not everything was perfect. The chair is significantly higher than the present one which means we need to raise our dining table using blocks. And because the motorized foot-plates are more complicated to take off the carers are going to find transfers more difficult. The chair is a little longer as well which means taking certain corners around the flat will be more challenging. I'm sure these things will lead to a deal of frustration and no doubt those frustrations will be reported on these pages but at the moment I am almost beside myself with excitement.
The wheelchair has gone away for fine tuning and adjustments, not least to reprogram the controller so that the chair goes at more than the 0.5 miles an hour it would only go yesterday. This was particularly embarrassing when I wanted to nip out to the car and check that the chair would fit in it. It took nearly 15 minutes to get round the corner while the engineer frantically phoned the office for instructions on how to access the power menu. I am assured it was only a programming glitch and can be easily fixed. I hope so or all I will be taking delivery of next week will be a very comfy armchair, albeit one that moves faster than a speeding snail.
I will keep you informed.
The 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.
Saturday, 11 July 2009
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.
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
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.
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.
Sunday, 21 June 2009
What A Shower
Every so often someone comes up with an idea to improve my life – whether I like it or not.
In recent months I have been unable to use the shower-stool attached to the wall in our bathroom because I keep falling off it. The whole losing my balance thing has made showering the dangerous option when it comes to personal hygiene. My ingenious solution has been to have my showers dangling in the sling under the hoist, like a kind of dope on a rope. The problem with hanging in a blue nylon net-like sling whilst being hosed down by carers is that it is both uncomfortable and inefficient. You are inevitably somewhat scrunched up, with straps cutting into all sorts of intimate and unmentionable bits of you. And, when you are hanging like the catch of the day, it can be difficult to get the sponge in to all the... er. . . nooks and crannies, so to speak. Oh, and it can chafe.
Anyway, the occupational therapist was horrified when she learned of this situation and felt duty bound to do something about it. The result has been the arrival of an enormously large blue shower-chair on wheels, that takes up nearly a quarter to the bathroom floor space and needs to be wheeled out whenever anyone else wants a shower or whenever I want to use the bathroom at all. This shower-chair can tilt and be manoeuvred to allow all over access when showering. It was sold to me as being both more comfortable and as saving me a transfer on shower days because it is designed to fit over the toilet.
On Friday Kalapo and Godfrey dutifully and carefully hoisted me from the bed on to this monstrously huge chair and negotiated me down the hall and reversed me in to the bathroom toward the lavatory. Suddenly I felt cold porcelain smash in to my coccyx. Kalapo and Godfrey tried again. Perhaps if they pushed harder? They tried. I can tell you from personal experience that porcelain is not in any way malleable. The shower-chair may well be huge but it is not, as it turns out, particularly high.
In the end I was hoisted from the shower-chair to the toilet and back again and then wheeled directly into the shower whereupon things proceeded as they should. I was tilted, spun, hosed, sponged and towelled before I knew it.
It was only later that Polly pointed out that the shower-chair had extendible legs.
At least I'm clean.
In recent months I have been unable to use the shower-stool attached to the wall in our bathroom because I keep falling off it. The whole losing my balance thing has made showering the dangerous option when it comes to personal hygiene. My ingenious solution has been to have my showers dangling in the sling under the hoist, like a kind of dope on a rope. The problem with hanging in a blue nylon net-like sling whilst being hosed down by carers is that it is both uncomfortable and inefficient. You are inevitably somewhat scrunched up, with straps cutting into all sorts of intimate and unmentionable bits of you. And, when you are hanging like the catch of the day, it can be difficult to get the sponge in to all the... er. . . nooks and crannies, so to speak. Oh, and it can chafe.
Anyway, the occupational therapist was horrified when she learned of this situation and felt duty bound to do something about it. The result has been the arrival of an enormously large blue shower-chair on wheels, that takes up nearly a quarter to the bathroom floor space and needs to be wheeled out whenever anyone else wants a shower or whenever I want to use the bathroom at all. This shower-chair can tilt and be manoeuvred to allow all over access when showering. It was sold to me as being both more comfortable and as saving me a transfer on shower days because it is designed to fit over the toilet.
On Friday Kalapo and Godfrey dutifully and carefully hoisted me from the bed on to this monstrously huge chair and negotiated me down the hall and reversed me in to the bathroom toward the lavatory. Suddenly I felt cold porcelain smash in to my coccyx. Kalapo and Godfrey tried again. Perhaps if they pushed harder? They tried. I can tell you from personal experience that porcelain is not in any way malleable. The shower-chair may well be huge but it is not, as it turns out, particularly high.
In the end I was hoisted from the shower-chair to the toilet and back again and then wheeled directly into the shower whereupon things proceeded as they should. I was tilted, spun, hosed, sponged and towelled before I knew it.
It was only later that Polly pointed out that the shower-chair had extendible legs.
At least I'm clean.
Monday, 15 June 2009
Not Just A Chair
Oh the dilemma.
If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.
The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.
However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.
To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.
So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .
They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.
I'll keep you informed.
If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.
The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.
However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.
To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.
So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .
They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.
I'll keep you informed.
Friday, 5 June 2009
Mobility Roadshow
The problem with not having blogged recently is that I have a backlog news and views to impart. For example, I have been beset by community physiotherapists, speech therapists and OTs who have all made eminently sensible suggestions and any one of them would have made for a good post. I also made the journey to King's Hospital to see Dr Rose and his team where I was assessed and plans were drawn up, strategies devised and letters arranged to be written. Dr Rose also, and most importantly, helped me to get a handle on what has been happening to me regarding my Muscular Dystrophy.
The last few months have seen a disconcertingly rapid slide in my condition which shows no sign of slowing. Since Christmas I have lost the ability to raise my arm to feed myself (although that's been slightly compensated for by my bionic arm) and, most alarmingly, the core muscles around my trunk have weakened to the point where my balance is severely compromised. The continual micro-adjustments needed to stay upright are exhausting and painful. A lesser man than myself would moan and probably sink into deep depression and write a blog telling the world about his problems. A lesser man might, I however will only mention it in passing. According to Dr Rose the Dystrophy is not accelerating but continuing on it's natural slow decline at a steady rate. What has occurred recently is that several muscle groups have reached a kind of tipping point and, like a Labour cabinet minister, given up their support. Believe me their disloyalty will not be forgotten. The net result is that I have to work a awful lot harder to maintain the physical ability I had last year, last month, or even last week. Time to act.
I need a new wheelchair. More about that soon.
Yesterday we all headed west to Cirencester and the Mobility Roadshow to look at wheelchair accessible vans. It was a lovely sunny day and we were up and off at the crack of dawn to travel more than one hundred miles to an airfield in the heart of the countryside. There we looked at a dozen or more vehicle conversions.
It was great meeting a few of the readers of this blog in the real rather than virtual world as we wandered around dodging people test driving their new scooters and exhibitors handing out forest loads of leaflets promoting products like wheelchair slippers.
In the end we settled on a Volkswagon Caddy Maxi conversion by Lewis Reed, a car that seats 5 plus a wheelchair. You would be amazed at the variations that can be achieved on the same base vehicle. Some of the wheelchair entry ramps required a weight-lifter on steroids to lift them and others a Mensa level IQ to work out how to operate them. Some of the conversions seemed to have favoured plastic as their primary construction material. Unfortunately they have valued it gram for gram as gold.
In case you think we must have won the lottery we can only afford a new car because I have an incredibly lovely and generous brother and sister.
We eventually made it home just in time for the carers to put exhausted little old me to bed. Unfortunately my profiling bed decided to take this opportunity to breakdown. It would go up but not down. By the time we had fiddled around it ended up stuck five feet in the air. I spent the night hovering above Polly with her gazing up adoringly at me.
More soon.
The last few months have seen a disconcertingly rapid slide in my condition which shows no sign of slowing. Since Christmas I have lost the ability to raise my arm to feed myself (although that's been slightly compensated for by my bionic arm) and, most alarmingly, the core muscles around my trunk have weakened to the point where my balance is severely compromised. The continual micro-adjustments needed to stay upright are exhausting and painful. A lesser man than myself would moan and probably sink into deep depression and write a blog telling the world about his problems. A lesser man might, I however will only mention it in passing. According to Dr Rose the Dystrophy is not accelerating but continuing on it's natural slow decline at a steady rate. What has occurred recently is that several muscle groups have reached a kind of tipping point and, like a Labour cabinet minister, given up their support. Believe me their disloyalty will not be forgotten. The net result is that I have to work a awful lot harder to maintain the physical ability I had last year, last month, or even last week. Time to act.
I need a new wheelchair. More about that soon.
Yesterday we all headed west to Cirencester and the Mobility Roadshow to look at wheelchair accessible vans. It was a lovely sunny day and we were up and off at the crack of dawn to travel more than one hundred miles to an airfield in the heart of the countryside. There we looked at a dozen or more vehicle conversions.
It was great meeting a few of the readers of this blog in the real rather than virtual world as we wandered around dodging people test driving their new scooters and exhibitors handing out forest loads of leaflets promoting products like wheelchair slippers.
In the end we settled on a Volkswagon Caddy Maxi conversion by Lewis Reed, a car that seats 5 plus a wheelchair. You would be amazed at the variations that can be achieved on the same base vehicle. Some of the wheelchair entry ramps required a weight-lifter on steroids to lift them and others a Mensa level IQ to work out how to operate them. Some of the conversions seemed to have favoured plastic as their primary construction material. Unfortunately they have valued it gram for gram as gold.
In case you think we must have won the lottery we can only afford a new car because I have an incredibly lovely and generous brother and sister.
We eventually made it home just in time for the carers to put exhausted little old me to bed. Unfortunately my profiling bed decided to take this opportunity to breakdown. It would go up but not down. By the time we had fiddled around it ended up stuck five feet in the air. I spent the night hovering above Polly with her gazing up adoringly at me.
More soon.
Wednesday, 20 May 2009
Speak Easy
I have a new on-screen keyboard I am trying out, it has lots of fancy predictive text facilities that should, in theory, speed up my typing. I can but give it a go.
Yesterday I was visited by a speech therapist who came to remind me how to talk, which was very useful because it is the kind of thing I might forget left to myself. Apparently I have a tendency to Dysarthria, which means slurred speech, something I used to achieve with a bottle or two of wine but now comes naturally. Who says I'm not making some progress. She asked me it I wanted to consider using a voice amplifier. This would mean wearing a head microphone and a small speaker but would make shouting at the kids easier. The problem, as I see it, is that the small speaker looks as though it was designed circa 1979 in beige plastic, and lacks even a retro nostalgia. Imagine an ipod speaker designed by Tupperware.
The speech therapist gave me a helpful advise sheet which includes useful suggestions such as “ Do not carry on talking when your breath has run out. Stop, breathe in and carry on.“ I think you will agree that that is very sensible and I will seek to do just that.
Until next time... Breathe in, breathe out.
Yesterday I was visited by a speech therapist who came to remind me how to talk, which was very useful because it is the kind of thing I might forget left to myself. Apparently I have a tendency to Dysarthria, which means slurred speech, something I used to achieve with a bottle or two of wine but now comes naturally. Who says I'm not making some progress. She asked me it I wanted to consider using a voice amplifier. This would mean wearing a head microphone and a small speaker but would make shouting at the kids easier. The problem, as I see it, is that the small speaker looks as though it was designed circa 1979 in beige plastic, and lacks even a retro nostalgia. Imagine an ipod speaker designed by Tupperware.
The speech therapist gave me a helpful advise sheet which includes useful suggestions such as “ Do not carry on talking when your breath has run out. Stop, breathe in and carry on.“ I think you will agree that that is very sensible and I will seek to do just that.
Until next time... Breathe in, breathe out.
Tuesday, 19 May 2009
Bionics And Gaffer Tape
"Steve Deal, writer. A man barely alive. Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world's first bionic man. Steve Deal will be that man. Better than he was before. Better, stronger, faster... so long as Polly has enough gaffer tape."
Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.
The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.
So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.
The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.
In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.
And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.
Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.
The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.
So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.
The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.
In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.
And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.
Tuesday, 12 May 2009
Quiz Night
Which planet, apart from Venus, has no moon? Who, because of his smallpox vaccine, is known as the father of immunization? Name all seven colours of the rainbow. Who illustrated A.A. Milne's Winnie The Pooh? Who led the peasants' revolt of 1381? Which artistic movement was Monet part of? What is the chemical symbol for Tungsten?
Saturday night was Quiz night, a fund-raising event at the school. I love quizzes and become insufferably competitive at the merest hint of one, so this was an evening I had been looking forward to. Inevitably we were running late so had to gulp down tea before whizzing over to the school hall on foot and wheel.
The quiz was excellent, with a good balance of questions, and we had a good team comprising of an airline pilot, social worker, paramedic and someone in publishing among others. Our table was covered in crisps and snacky type things as well as wine and soft-drinks. Unfortunately I was beginning to get bubbly in the chest so the joyous prospect of eating high fat content potato based nibbles was diminished for me. After the first couple of rounds it was clear that we were outclassed by Table 5 who were answering correctly, on average, a question per round more than we were. I discreetly surveilled them, looking for evidence of iPhone internet connection, but it appeared they were just clever and not cheating. Rats.
As we passed through Food and Drink, Music and Sport I felt my head begin to swim as the bubbling in my lungs required me to cough more and more. By the time we entered into the History round Polly was suggesting we leave, or at least that she pop home to get the cough-assist machine. William Wallace I snapped. Robert the Bruce someone countered. Who led the Scots at bloody Bannockburn? Little red dots floated around me as I tried to order my Scottish battles. Bruce, I conceded. No I was not going home and no I didn't want Polly going to get the cough-assist machine. The second she left we would be faced with a series of questions on nursery rhymes or balloon modelling or something.
The final round, General Knowledge, came at last. We were in a good position to take second place, Table 5 having romped away with it by knowing who designed the Spitfire, but we needed a good round. Could I remember the name of the fish, previously thought to be extinct, rediscovered in the Indian ocean in 1938? Could I buffalo. I knew I knew it, it was on the tip of my tongue. Cough cough. Despite my pathetic performance our team managed a dignified second after all, thanks, in part, to knowing in which year Queen Victoria died.
Flushed with success and a surfeit of carbon dioxide I made my way home with Polly. To my horror and confusion I found that I could barely steer the wheelchair. It seemed to take forever to travel the route we have walked (wheeled) countless times before. My balance was completely shot and I couldn't get my hand in the right position to use the joystick. Fortunately Jason, a friend, team mate and para-medic, had offered to help me since we had had to cancel the carers that night. My thanks to him and Polly or I would never have made it to bed and the reassuring hum of the BiPap.
Now what? Oh yes, answers, as if you need them. Thanks to Geoff who compiled the quiz.
Mercury. Edward Jenner. Red Orange Yellow Green Blue Indigo Violet. E.H. Shepard. Watt Tyler. The Impressionists. W.
Robert the Bruce.
R. J. Mitchell. 1901. And the bloody fish was a Coelacanth, of course. (But you knew that, didn't you.)
Saturday night was Quiz night, a fund-raising event at the school. I love quizzes and become insufferably competitive at the merest hint of one, so this was an evening I had been looking forward to. Inevitably we were running late so had to gulp down tea before whizzing over to the school hall on foot and wheel.
The quiz was excellent, with a good balance of questions, and we had a good team comprising of an airline pilot, social worker, paramedic and someone in publishing among others. Our table was covered in crisps and snacky type things as well as wine and soft-drinks. Unfortunately I was beginning to get bubbly in the chest so the joyous prospect of eating high fat content potato based nibbles was diminished for me. After the first couple of rounds it was clear that we were outclassed by Table 5 who were answering correctly, on average, a question per round more than we were. I discreetly surveilled them, looking for evidence of iPhone internet connection, but it appeared they were just clever and not cheating. Rats.
As we passed through Food and Drink, Music and Sport I felt my head begin to swim as the bubbling in my lungs required me to cough more and more. By the time we entered into the History round Polly was suggesting we leave, or at least that she pop home to get the cough-assist machine. William Wallace I snapped. Robert the Bruce someone countered. Who led the Scots at bloody Bannockburn? Little red dots floated around me as I tried to order my Scottish battles. Bruce, I conceded. No I was not going home and no I didn't want Polly going to get the cough-assist machine. The second she left we would be faced with a series of questions on nursery rhymes or balloon modelling or something.
The final round, General Knowledge, came at last. We were in a good position to take second place, Table 5 having romped away with it by knowing who designed the Spitfire, but we needed a good round. Could I remember the name of the fish, previously thought to be extinct, rediscovered in the Indian ocean in 1938? Could I buffalo. I knew I knew it, it was on the tip of my tongue. Cough cough. Despite my pathetic performance our team managed a dignified second after all, thanks, in part, to knowing in which year Queen Victoria died.
Flushed with success and a surfeit of carbon dioxide I made my way home with Polly. To my horror and confusion I found that I could barely steer the wheelchair. It seemed to take forever to travel the route we have walked (wheeled) countless times before. My balance was completely shot and I couldn't get my hand in the right position to use the joystick. Fortunately Jason, a friend, team mate and para-medic, had offered to help me since we had had to cancel the carers that night. My thanks to him and Polly or I would never have made it to bed and the reassuring hum of the BiPap.
Now what? Oh yes, answers, as if you need them. Thanks to Geoff who compiled the quiz.
Mercury. Edward Jenner. Red Orange Yellow Green Blue Indigo Violet. E.H. Shepard. Watt Tyler. The Impressionists. W.
Robert the Bruce.
R. J. Mitchell. 1901. And the bloody fish was a Coelacanth, of course. (But you knew that, didn't you.)
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