I don't know, what is the world coming to? Theft and criminal damage visited upon children and the disabled. No, don't worry, you haven't accidentally happened on the Daily Mail website, it's still me. It's been a miserable few days thanks to a couple of miserable events. Polly and Sam's godmother, the lovely Stacey, took the boys to the park the other day. The boys rode their Flashing Storm scooters as they often do and left them as usual against the fence. It was cold and starting to get dark so they didn't play for long. Just a quick nip up the climbing wall and a whiz round on the round-about and back home. Only when they went to collect the scooters, as they have a thousand times before, they were gone. Stolen, nicked, made off with. Some heartless bastard had scooted off with my boys precious wheels.
The boys were devastated, particularly Matty, and felt suddenly vulnerable in a place they had previously felt safe in. Sam was more put out by the fact that he would now have to walk home. I suppose it would be unchristian of me to hope the wheels fall off and a trip to casualty ensues.
Then, on Saturday, Polly was working in Wimbledon and was parked on the street. When she returned from entertaining a pack of little darlings to load her equipment back into the van she found that some numpty had driven into the back of it with one of those metal tow bar fixtures you attach caravans or trailers to. The resulting damage means that the ramp no longer works and I can't use our van any more. We will have to take it to a body repair shop and have bits welded back together at vast expense and inconvenience. Thank you whoever you are. I hope the lump of metal on the back of your vehicle did not suffer too much damage.
So, if anyone offers you some cheap children's scooters, let me know. And if their car has a slightly damaged tow bar with flecks of white paint on it, do me a favour and let their tyres down.
On a completely different and happier note I would like to congratulate my friend Alistair Kevin Daniel on the confirmation of his doctorate. I'm still not exactly sure what semiotics is, but it's good to know they are in such safe hands. I'm very proud of you Dr Daniel, well done. If ever there was a man born to wear scarlet medieval robes, it was you.
Monday, 19 January 2009
Friday, 16 January 2009
It's A Bugs Life
We are awash with children. The school is closed for an Inset day (In Service Training day or – if you don't do school-speak – a day off for staff to learn how to teach better). So far we've had sticking and cutting, bouncing on the mini trampoline in the garden, Operation, computer games and miscellaneous toys that beep and play bad music a lot. At the last count there were five children running around our small living room. At the moment they are sat in a circle having a picnic.
One of the children in Sam's class at school informed his mother that their teacher, Mrs W, was going to spend the day learning about bugs. This puzzled the mother who had heard that the staff were attending a conference on best practice. “Are you sure?” the mother asked. “Yes,” replied the boy. “They are going learn about all sorts of bugs. Big ones, little ones, ones that fly and ones that sting.” It was possible, the mother supposed, but it seemed unlikely. “How do you know?” She asked. “Mrs W told us,” explained the boy. “She said she was having an Insect day.”
One of the children in Sam's class at school informed his mother that their teacher, Mrs W, was going to spend the day learning about bugs. This puzzled the mother who had heard that the staff were attending a conference on best practice. “Are you sure?” the mother asked. “Yes,” replied the boy. “They are going learn about all sorts of bugs. Big ones, little ones, ones that fly and ones that sting.” It was possible, the mother supposed, but it seemed unlikely. “How do you know?” She asked. “Mrs W told us,” explained the boy. “She said she was having an Insect day.”
Thursday, 15 January 2009
January Blues
I'm aware that this blog has become a bit moany of late what with all the hassles around the homecare. I don't want to give you the impression that my life is purely a string of niggles and arguments. Except that at the moment it is. A big part of the problem is that it is January. January and February are pants. Here in the UK they are cold, grey months, often rainy or icy, that make going out difficult because you need lots of layers. Lots of layers means lots of effort. A few days ago I went shopping with Polly and the boys. The temperature was just below freezing and I wore a T-shirt, a jumper, a fleece and a winter coat. Plus a woolly hat and a scarf. I was quite warm but I couldn't actually bend my arms.
Since muscles are the main source of heat production and maintenance of body temperature the severe muscle wasting in neuromuscular conditions, coupled with the inevitable reduction or lack of mobility, means that people with MD feel the cold. It always feels several degrees colder to me than to those around me. As a result our home heating bills resemble those of farmers growing tropical fruit in mid-winter and those visiting our flat are met with a wall of heat. Even carers from Nigeria tend to take off their jackets when they come to us.
I hate being cold. My body shuts down and I find it hard to think. Once my core body temperature drops below a certain point it seems to take forever to get warm again.
Once, a long time ago, I was working at a conference held in some Scottish castle near Glasgow. My friend and colleague Kevin and I were billeted in an annex along side the main grand building in a room with glass missing from several fanlights. It was early summer, but this was Scotland, and as night fell so did the temperature. It is an enduring memory of mine, sitting huddled up, warming myself by the one source of heat that we had between us, Kevin's tiny travel iron. Kevin kindly turned it up fill blast and placed in on a low table next to my wheelchair and by its feeble heat I fended off hypothermia.
I've just seen the weather forecast for the weekend; rain and sleet. Great. Wake me in the spring.
Since muscles are the main source of heat production and maintenance of body temperature the severe muscle wasting in neuromuscular conditions, coupled with the inevitable reduction or lack of mobility, means that people with MD feel the cold. It always feels several degrees colder to me than to those around me. As a result our home heating bills resemble those of farmers growing tropical fruit in mid-winter and those visiting our flat are met with a wall of heat. Even carers from Nigeria tend to take off their jackets when they come to us.
I hate being cold. My body shuts down and I find it hard to think. Once my core body temperature drops below a certain point it seems to take forever to get warm again.
Once, a long time ago, I was working at a conference held in some Scottish castle near Glasgow. My friend and colleague Kevin and I were billeted in an annex along side the main grand building in a room with glass missing from several fanlights. It was early summer, but this was Scotland, and as night fell so did the temperature. It is an enduring memory of mine, sitting huddled up, warming myself by the one source of heat that we had between us, Kevin's tiny travel iron. Kevin kindly turned it up fill blast and placed in on a low table next to my wheelchair and by its feeble heat I fended off hypothermia.
I've just seen the weather forecast for the weekend; rain and sleet. Great. Wake me in the spring.
Tuesday, 13 January 2009
Caught In The Middle
Polly has just read the homecare agency the riot act. Not for any one particular reason, but rather for the accumulative drip drip drip of minor (and occasional major) misdemeanours. This mornings it was arriving an hour late without notifying us of the delay. Others include not writing in the homecare record book, expecting time sheets to be signed with out the times filled in, and general lack of training.
The relationship between the disabled client and their carers is, as you might imagine, complex. I rely on my team for a series of highly personal tasks, from dressing, washing and going to the toilet, to fitting the ventilator mask at night and charging the wheelchair battery. You want to be friendly but not necessarily friends. You want carers to be efficient and aware of what needs doing but you don't want to take them for granted. When there are problems you need a straight forward way of dealing with them. Often it is not the individual carer who is at fault but rather the support they are getting from their employers. (For example, if a carer is running late it is the responsibility of the office to keep us informed.) When things are going well the quality of life for the client is enhanced. When they aren't the quality of life is eroded, making a difficult situation unbearable.
The agency who employ the carers I use only pay the carers for the hours they work. They get no sick pay, so they will often struggle into work when they are unwell. This is bad for them and positively dangerous for me if they are working with an infectious cold. I have known carers to work morning and night, every single day, week after week, for months on end, reluctant to take a day off because they simply can not afford too. Inevitably many of them crash and burn.
I'd be interested to know the exact employment status of the individual carer. Are they employees? Self-employed? Indentured slaves? Councils employ homecare agencies to fulfil their statutory obligation to provide the service because agencies are cheaper than providing an in-house service. It seems to me that councils turn a blind eye to the exact reasons how and why agencies provide a cheaper service.
And caught in the middle of this exhausting and sometimes exploitative situation are people like myself.
Every night I wear a nasal mask attached to a ventilator. The mask is held In place by a web of straps that can be adjusted to hold the mask at the right tension and in the right position to make a pressurised seal. Over recent nights something has been going wrong. I'm tired and needing the ventilator and perhaps settling for things being done too quickly. The language requirements needed to explain the very slight adjustments required for a perfect fit are beyond me when I am tired and English is often the carer's 3rd or 4th language. The result has been a slightly ill-fitting mask which has made slight abrasions to the inside is my nostrils and the straps have cut into the skin above my ears. I've woken perhaps a dozen times in the night by the pain and tried to make adjustments myself, but have been thwarted by my dodgy left arm. This morning Joyce, one of the carers, observed me and said disapprovingly, “there is blood.” Tonight I will be even more tired.
In many ways I am fortunate. I can articulate my grievances and worries. I have Polly to advocate on my behalf. But I worry for the countless vulnerable people who receive a service that is being parred to the bone and who can not moan and kick up a fuss. I bet their nostrils hurt like hell.
The relationship between the disabled client and their carers is, as you might imagine, complex. I rely on my team for a series of highly personal tasks, from dressing, washing and going to the toilet, to fitting the ventilator mask at night and charging the wheelchair battery. You want to be friendly but not necessarily friends. You want carers to be efficient and aware of what needs doing but you don't want to take them for granted. When there are problems you need a straight forward way of dealing with them. Often it is not the individual carer who is at fault but rather the support they are getting from their employers. (For example, if a carer is running late it is the responsibility of the office to keep us informed.) When things are going well the quality of life for the client is enhanced. When they aren't the quality of life is eroded, making a difficult situation unbearable.
The agency who employ the carers I use only pay the carers for the hours they work. They get no sick pay, so they will often struggle into work when they are unwell. This is bad for them and positively dangerous for me if they are working with an infectious cold. I have known carers to work morning and night, every single day, week after week, for months on end, reluctant to take a day off because they simply can not afford too. Inevitably many of them crash and burn.
I'd be interested to know the exact employment status of the individual carer. Are they employees? Self-employed? Indentured slaves? Councils employ homecare agencies to fulfil their statutory obligation to provide the service because agencies are cheaper than providing an in-house service. It seems to me that councils turn a blind eye to the exact reasons how and why agencies provide a cheaper service.
And caught in the middle of this exhausting and sometimes exploitative situation are people like myself.
Every night I wear a nasal mask attached to a ventilator. The mask is held In place by a web of straps that can be adjusted to hold the mask at the right tension and in the right position to make a pressurised seal. Over recent nights something has been going wrong. I'm tired and needing the ventilator and perhaps settling for things being done too quickly. The language requirements needed to explain the very slight adjustments required for a perfect fit are beyond me when I am tired and English is often the carer's 3rd or 4th language. The result has been a slightly ill-fitting mask which has made slight abrasions to the inside is my nostrils and the straps have cut into the skin above my ears. I've woken perhaps a dozen times in the night by the pain and tried to make adjustments myself, but have been thwarted by my dodgy left arm. This morning Joyce, one of the carers, observed me and said disapprovingly, “there is blood.” Tonight I will be even more tired.
In many ways I am fortunate. I can articulate my grievances and worries. I have Polly to advocate on my behalf. But I worry for the countless vulnerable people who receive a service that is being parred to the bone and who can not moan and kick up a fuss. I bet their nostrils hurt like hell.
Monday, 12 January 2009
The Spin Cycle Of Life
As we slip 2009 comfortably on like a new favourite sweater and sniff it under the armpits to see if it needs a run through life's washing machine, I am left wondering what this year is going to bring. 2008 was a year of highs and lows. Polly running the marathon and in the process raising more than £5,500 for Muscular Dystrophy Campaign was a real high, as was her fabulous Indian themed, elephant endowed 40th birthday party. I have delighted in this blogging business, making new friends and finding an outlet for what passes for humour and storytelling. Getting back to writing on a regular basis has been for me a real boon. Sam starting school and watching Matty blossom this academic year, Polly getting her Clown Doctor job, have all been good.
The lows, of course, include the death of Polly's father, the gentle spirit that was John Burn back in June, and the horror of the Chicken Pox outbreak the boys endured in April where Matty even had spots on his eyeball. The ongoing and never ending saga of sorting out the homecare has been an enduring source of exhaustion and occasional ill-temper which, if you have been reading this blog for any length of time, you will be well aware of.
The hardest part of 2008 has for me been the deterioration in the FSH Muscular Dystrophy. My left arm, in particular, has suffered a progressive weakening which has been inconvenient to say the least, especially because I am left handed. It has made sleeping harder because if it slips out of position during the night I awake to find it either completely numb or burning with a kind of high temperature pins and needles which I either have to endure or wake Polly to move it for me. As a kind of cruel balance, my right leg seems to have taken a fondness to cramping, possibly because it bares the brunt of any imbalance that occurs during hoisting, another fun thing that was introduced in '08. On the plus side, I've managed to negotiate around the flu epidemic that so many have been smitten with, including ironically, my GP who organised for me to have the flu vaccine.
So, what of 2009? If we can take it as read that I'd like a peaceful solution to the situation in Gaza, an end to global warning, health and happiness for my family, relief from the credit crunch and the instant imprisonment of people who spit chewing gum on to the pavement; what would I hope for this year? Well...
I'd like homecare to sort itself out and provide competent, trained carers who are not overworked and exploited. I'd like a long warm summer with plenty of sunshine. I'd like a respite from various aches, pains and the minor irritants of disability. And I'd quite like for more people to read this blog. So please spread the word, leave comments and join with me to make 2009 the year that immediately precedes 2010. Thank you for your continued support and friendship.
The lows, of course, include the death of Polly's father, the gentle spirit that was John Burn back in June, and the horror of the Chicken Pox outbreak the boys endured in April where Matty even had spots on his eyeball. The ongoing and never ending saga of sorting out the homecare has been an enduring source of exhaustion and occasional ill-temper which, if you have been reading this blog for any length of time, you will be well aware of.
The hardest part of 2008 has for me been the deterioration in the FSH Muscular Dystrophy. My left arm, in particular, has suffered a progressive weakening which has been inconvenient to say the least, especially because I am left handed. It has made sleeping harder because if it slips out of position during the night I awake to find it either completely numb or burning with a kind of high temperature pins and needles which I either have to endure or wake Polly to move it for me. As a kind of cruel balance, my right leg seems to have taken a fondness to cramping, possibly because it bares the brunt of any imbalance that occurs during hoisting, another fun thing that was introduced in '08. On the plus side, I've managed to negotiate around the flu epidemic that so many have been smitten with, including ironically, my GP who organised for me to have the flu vaccine.
So, what of 2009? If we can take it as read that I'd like a peaceful solution to the situation in Gaza, an end to global warning, health and happiness for my family, relief from the credit crunch and the instant imprisonment of people who spit chewing gum on to the pavement; what would I hope for this year? Well...
I'd like homecare to sort itself out and provide competent, trained carers who are not overworked and exploited. I'd like a long warm summer with plenty of sunshine. I'd like a respite from various aches, pains and the minor irritants of disability. And I'd quite like for more people to read this blog. So please spread the word, leave comments and join with me to make 2009 the year that immediately precedes 2010. Thank you for your continued support and friendship.
Saturday, 10 January 2009
Don't Swear At The Carers
I shouted at my carers last night. I'm not at all proud of this but all I can say in mitigation was that I was in pain, finding it difficult to breathe and that we were doing nothing that we don't do every night. So why we were in such a mess? I don't know.
As has been mentioned on countless occasions in this blog already, I use a BiPap ventilator at night. Effectively what this bit of kit does is ensure I take deep enough breaths all night to expel the build up of CO2. The BiPap pumps air, under pressure, via a hose to a nasal mask that is strapped to my face. Every night we fit the mask. Every bloody night I explain which way up it goes. Last night, one of the carers, let's call her Woburn to spare her blushes, not only failed to fit the mask, but in her panic managed to break it in to it's component pieces even as it was being painfully yanked about my face.
At this point I must explain that I have an irrational fear of anything that obstructs my breathing. Months spent in Intensive Care on ventilation have left me highly aware of just how fragile my respiratory system is. The rational part of me knows that I will not suffocate if carers mess around with my mask, but several close shaves in the past means that the irrational part of me kicks in and I find it massively stressful. Woburn has fitted the mask on many occasions over the last six weeks or so, but every night it's as if it's the very first time she has ever seen the damn thing. Last night, as the mask disintegrated in her hands, I freaked out and told everyone to f**k off.
Inevitably Polly was called to sort it out. The poor girl has been working incredibly long hours doing her Clown Doctor training this week but yet again she had to step in and do the care teams job.
It says a lot about how I feel about the situation that I am actually relieved that Carlotta is back tonight. She may be a bit loopy and prone to attempting to heal me using psychic energy, but at least she is reasonably competent and is really trying to be a good carer.
As has been mentioned on countless occasions in this blog already, I use a BiPap ventilator at night. Effectively what this bit of kit does is ensure I take deep enough breaths all night to expel the build up of CO2. The BiPap pumps air, under pressure, via a hose to a nasal mask that is strapped to my face. Every night we fit the mask. Every bloody night I explain which way up it goes. Last night, one of the carers, let's call her Woburn to spare her blushes, not only failed to fit the mask, but in her panic managed to break it in to it's component pieces even as it was being painfully yanked about my face.
At this point I must explain that I have an irrational fear of anything that obstructs my breathing. Months spent in Intensive Care on ventilation have left me highly aware of just how fragile my respiratory system is. The rational part of me knows that I will not suffocate if carers mess around with my mask, but several close shaves in the past means that the irrational part of me kicks in and I find it massively stressful. Woburn has fitted the mask on many occasions over the last six weeks or so, but every night it's as if it's the very first time she has ever seen the damn thing. Last night, as the mask disintegrated in her hands, I freaked out and told everyone to f**k off.
Inevitably Polly was called to sort it out. The poor girl has been working incredibly long hours doing her Clown Doctor training this week but yet again she had to step in and do the care teams job.
It says a lot about how I feel about the situation that I am actually relieved that Carlotta is back tonight. She may be a bit loopy and prone to attempting to heal me using psychic energy, but at least she is reasonably competent and is really trying to be a good carer.
Wednesday, 7 January 2009
Why You Should Listen Carefully To Your Children
The other day, as Sam was about to go into the shower, he called out to Polly and asked “Mummy, please can I play with the foam in the shower?” There was a plastic bottle of shower foam he liked to play with, making foam bunnies and other foam based fauna. He had to ask before using it because previous occasions had resulted in the bathroom ending up knee deep in bubbles and the bottle emptied in a single session. Polly told him to go ahead and have fun and thanked him for asking so nicely.
Sometime later Polly went into the bathroom expecting foam bunny carnage but found it spotless. Sam was sat under the shower playing with something intently. “What have you got there, darling?” she asked. Sam, grinning happily, held up Polly's mobile phone. “Sam!” she exclaimed. “What are you doing?” Sam looked up shocked and burst in to tears. “But Mummy,” he wailed. “I asked very nicely if I could.” Polly, wrong footed for a moment, paused. Foam? Phone?
Polly looked at the now water-logged communications device and forced a smile. “Yes darling, you asked very nicely. Would you like to get dry now?”
“No thank you. I haven't finished playing my game yet. Can I play with some foam now?”
Sometime later Polly went into the bathroom expecting foam bunny carnage but found it spotless. Sam was sat under the shower playing with something intently. “What have you got there, darling?” she asked. Sam, grinning happily, held up Polly's mobile phone. “Sam!” she exclaimed. “What are you doing?” Sam looked up shocked and burst in to tears. “But Mummy,” he wailed. “I asked very nicely if I could.” Polly, wrong footed for a moment, paused. Foam? Phone?
Polly looked at the now water-logged communications device and forced a smile. “Yes darling, you asked very nicely. Would you like to get dry now?”
“No thank you. I haven't finished playing my game yet. Can I play with some foam now?”
Tuesday, 6 January 2009
The Healing Power Of Homecare
One of the best things about writing a blog is that when strange or exasperating things happen to you you at least have the compensation of thinking that it will make for an interesting post. I've been thinking this a lot recently.
With Godfrey off ill and Kalapo in Nigeria I've been left with a team of stand in carers. I've mentioned Abby and Carlotta previously. They are sweet women with minimal English who bicker and panic their way through each evening and morning call. Carlotta, who is a devotee of some Japanese spiritual enlightenment movement has taken to holding her hand a few inches from my body and transmitting healing energy in to me. She assures me it doesn't matter if I believe or not which is probably a good thing because I'm pretty sure that any heat that I am supposed to be feeling is coming from the mug of coffee I'm drinking than from any form of science defying psychic energy. Abby is becoming more and more irritated to find her colleague standing over me apparently doing nothing. Carlotta hisses that Abby must not know what she is doing because she is not a believer.
Yesterday Carlotta went back to school so she will not be coming so frequently. She says she plans to visit family in Paris next weekend and promises to bring me back some French cheese. As I said, very sweet; it's just a shame she is is mad as a box of frogs. Carlota's replacement is Lola, a rather surly woman who seems to begrudge having to make evening calls, telling Polly she expects me to be ready to go to bed at 8:30. She can expect what she likes.
Meanwhile, Lola is being taught the ins and outs of my homecare by Abby who barely manages to remember her own role, let alone someone else's. As a result I spent several terrifying minutes dangling over the toilet yesterday while the two women randomly pressed buttons on the hoist remote control before calling for Polly to come and sort them out.
Oh, and just in case you think my days are any better, Polly is off learning to be a clown doctor again and the district nurses have been organised to come to help me go to the loo sometime between 2:00 and 2:30pm. It's now 3:15pm and there's no sign of them. If I knew for certain they would definitely turn up I'd be in half a mind to wet myself just to give them the extra work.
Thank you for reading.
P.S. They arrived at 3:25pm, very apologetic. Now I feel guilty.
With Godfrey off ill and Kalapo in Nigeria I've been left with a team of stand in carers. I've mentioned Abby and Carlotta previously. They are sweet women with minimal English who bicker and panic their way through each evening and morning call. Carlotta, who is a devotee of some Japanese spiritual enlightenment movement has taken to holding her hand a few inches from my body and transmitting healing energy in to me. She assures me it doesn't matter if I believe or not which is probably a good thing because I'm pretty sure that any heat that I am supposed to be feeling is coming from the mug of coffee I'm drinking than from any form of science defying psychic energy. Abby is becoming more and more irritated to find her colleague standing over me apparently doing nothing. Carlotta hisses that Abby must not know what she is doing because she is not a believer.
Yesterday Carlotta went back to school so she will not be coming so frequently. She says she plans to visit family in Paris next weekend and promises to bring me back some French cheese. As I said, very sweet; it's just a shame she is is mad as a box of frogs. Carlota's replacement is Lola, a rather surly woman who seems to begrudge having to make evening calls, telling Polly she expects me to be ready to go to bed at 8:30. She can expect what she likes.
Meanwhile, Lola is being taught the ins and outs of my homecare by Abby who barely manages to remember her own role, let alone someone else's. As a result I spent several terrifying minutes dangling over the toilet yesterday while the two women randomly pressed buttons on the hoist remote control before calling for Polly to come and sort them out.
Oh, and just in case you think my days are any better, Polly is off learning to be a clown doctor again and the district nurses have been organised to come to help me go to the loo sometime between 2:00 and 2:30pm. It's now 3:15pm and there's no sign of them. If I knew for certain they would definitely turn up I'd be in half a mind to wet myself just to give them the extra work.
Thank you for reading.
P.S. They arrived at 3:25pm, very apologetic. Now I feel guilty.
Saturday, 3 January 2009
Polly Come Quick - It Broke
Cast your mind back all the way to new years eve. As the country prepared to party and light overly loud fireworks Polly and I, exhausted from and at the whim of a week of temporary carers, prepared for a reasonably early night. Carlotta and Abby arrived and got in each others way but somehow got me ready for bed. But then the familiar cry went out, “Polly, Polly, quick. Come!”
The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.
Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”
The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.
Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.
One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'
The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.
Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”
The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.
Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.
One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'
Thursday, 1 January 2009
It's Lovely - Did You Keep The Receipt?
Happy New Year.
It's been a long week. Christmas day seems a long time ago now. And the dust has finally settled. In my defence I would like to say that I have a pretty good record of present giving. In the last few months we've had a 15th wedding anniversary (perfume) and a 40th birthday (artwork) and now Christmas. I gave Polly some magic tricks that she wanted for her clown doctoring and the latest book in the No. 1 Ladies' Detective Agency series that she loves. I also gave her a Tefal ActiFry Low Fat Electric Fryer. She took one look at it and said, “Oh lovely, a chip pan.” There was a pause while icicles formed before she asked, “did you keep the receipt?” Apparently what I really meant to give her was some rather expensive face cream.
We spent Christmas day at my brother Simon's house where the Deal clan had gathered. My sister-in-law Jaspreet had prepared a fabulous dinner of which the centre piece was a 5 bird roast which as best I can work out consisted of a fresh Turkey breast, stuffed with Chicken, stuffed with Duck, stuffed with Guinea Fowl, stuffed with Wood Pigeon. The boys were in ecstasy having received from overly indulgent relatives various electronic games machines including a Wii Fit, Nintendo DS's and joy of joys, a Playstation 3. Even as I write Matty is busy playing with. . . some Lego. (Some toys are timeless.)
Polly gave me a beautiful print by a local artist of Carshalton pond and a Bill Bailey DVD. Among other wonderful and generous gifts, I received from my sister Helena and brother-in-law Andrew a gadget designed especially with me in mind, a Sony Reader. I now can carry an entire library with me at all times. I find I can read much faster when I don't have to fiddle with turning pages. Wonderful.
Boxing day was delightfully quiet but of course not everything has gone smoothly. Kalapo, one of my regular carers has gone home to Nigeria for Christmas and Godfrey, the other regular, has been very unwell. As I result I've been left with two sweet, but rather scatty women, neither of whom have a full grasp of English (or indeed caring). The week has been full of perilously dangerous transfers and shrieks of “Polly, Polly, come help. Quick!” I've run out of ways to explain how to fit the foot-plates to the wheelchair and I've been too scared to have a shower all week. Carlotta saying “I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry,” is no compensation for a broken leg.
Today, New Years day, we forsook the carers and Polly got me up and gave me a much needed shower in half the time that the women take to give me a wash. So I've started 2009 all clean and shiny. My new years resolution is to only buy Polly presents that don't cook food.
It's been a long week. Christmas day seems a long time ago now. And the dust has finally settled. In my defence I would like to say that I have a pretty good record of present giving. In the last few months we've had a 15th wedding anniversary (perfume) and a 40th birthday (artwork) and now Christmas. I gave Polly some magic tricks that she wanted for her clown doctoring and the latest book in the No. 1 Ladies' Detective Agency series that she loves. I also gave her a Tefal ActiFry Low Fat Electric Fryer. She took one look at it and said, “Oh lovely, a chip pan.” There was a pause while icicles formed before she asked, “did you keep the receipt?” Apparently what I really meant to give her was some rather expensive face cream.
We spent Christmas day at my brother Simon's house where the Deal clan had gathered. My sister-in-law Jaspreet had prepared a fabulous dinner of which the centre piece was a 5 bird roast which as best I can work out consisted of a fresh Turkey breast, stuffed with Chicken, stuffed with Duck, stuffed with Guinea Fowl, stuffed with Wood Pigeon. The boys were in ecstasy having received from overly indulgent relatives various electronic games machines including a Wii Fit, Nintendo DS's and joy of joys, a Playstation 3. Even as I write Matty is busy playing with. . . some Lego. (Some toys are timeless.)
Polly gave me a beautiful print by a local artist of Carshalton pond and a Bill Bailey DVD. Among other wonderful and generous gifts, I received from my sister Helena and brother-in-law Andrew a gadget designed especially with me in mind, a Sony Reader. I now can carry an entire library with me at all times. I find I can read much faster when I don't have to fiddle with turning pages. Wonderful.
Boxing day was delightfully quiet but of course not everything has gone smoothly. Kalapo, one of my regular carers has gone home to Nigeria for Christmas and Godfrey, the other regular, has been very unwell. As I result I've been left with two sweet, but rather scatty women, neither of whom have a full grasp of English (or indeed caring). The week has been full of perilously dangerous transfers and shrieks of “Polly, Polly, come help. Quick!” I've run out of ways to explain how to fit the foot-plates to the wheelchair and I've been too scared to have a shower all week. Carlotta saying “I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry,” is no compensation for a broken leg.
Today, New Years day, we forsook the carers and Polly got me up and gave me a much needed shower in half the time that the women take to give me a wash. So I've started 2009 all clean and shiny. My new years resolution is to only buy Polly presents that don't cook food.
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