I am fully recovered from my visit to planet Noro I am pleased to say. Thank you for all the messages of sympathy and I'm sorry if you have suffered similarly.
Yesterday Nina, the speech and communication specialist, came for another visit. During our conversation last week I had mentioned that I often have difficulty making myself heard in noisy environments because I am unable to project my voice loudly enough. Nina was excited because she had a solution to this problem and this week she had brought with her a plastic case containing a voice amplifier. The device was about the size of an old fashioned Sony Walkman and came with a transdermal (throat) microphone. The EchoVoice has a built in speaker, an on/off switch and a volume control and that's pretty much it. The idea is that you can speak at a low volume and the device amplifies the voice through the speaker. Simple.
Unfortunately not only is the device the size of a Sony Walkman it also looks like it was designed by Amstrad and built in the 1980s being made primarily of beige plastic and with a speaker that wouldn't have been out of place in a transistor radio. As soon as I turned the volume up to a useful level my voice distorted as if it were being fed through a guitar fuzz box. It would be perfect if I wanted to announce the 2.37 from Paddington and not want anyone to understand but not so good for a chat in the school playground. Nina, who had tested the EchoVoice in her office, was disappointed by the reality in the field. I sounded like a rather breathy Dalek. Unfortunately not a very loud one.
Nina left to see if she would have more luck finding something to speed up my typing. I'll let you know how we get on.
Until next time...
Friday, 21 May 2010
Wednesday, 12 May 2010
Sick And Tired
If you are unfamiliar with the term Norovirus you are exceedingly fortunate. I mention this because I am now on more than nodding terms with the little packets of DNA and RNA wrapped in protein. The last few days have not been particularly pleasant. I admit that I am self-diagnosing here, and I may be infected with a distant cousin of Noro but since my carers inform me that another of their clients has had the virus I think I'm justified at pointing the finger at the micro-parcel of misery.
Sickness and wheelchairs are not an ideal combination in anyone's book. I'm fortunate that I've had only a relatively mild case but it has still been distinctly grim. I'm over the worse but still feel a little delicate.
Today I had a visit from a Speech and Communications specialist called Nina who came to assess me. You will be surprised to hear that I do, in fact, have the ability to communicate but Nina plans to help me do it better. She is looking into technology that might help speed up my typing and also a system that could help me communicate in noisy environments. We will be meeting again next week. I will, of course, let you know how it goes.
Until next time.
Sickness and wheelchairs are not an ideal combination in anyone's book. I'm fortunate that I've had only a relatively mild case but it has still been distinctly grim. I'm over the worse but still feel a little delicate.
Today I had a visit from a Speech and Communications specialist called Nina who came to assess me. You will be surprised to hear that I do, in fact, have the ability to communicate but Nina plans to help me do it better. She is looking into technology that might help speed up my typing and also a system that could help me communicate in noisy environments. We will be meeting again next week. I will, of course, let you know how it goes.
Until next time.
Sunday, 9 May 2010
Birthday Boy and Quiz Night
Saturday was Sam's sixth birthday. We have been counting down to the day for months. It is beyond my abilities as a writer to communicate just how vibratingly excited my second born has been in anticipation of the day. His maths has improved no end as he's mastered subtraction and the day has been built up in his mind to a day of birthday perfection. No pressure then. At six o'clock am precisely our bedroom door flew open and our newly minted six-year-old burst in followed seconds later by a slightly blurry-eyed older brother.
Amidst the mass of wrapping paper covered presents was a blue camera from his great aunt Megan. From then on it was like being in bed with a Paparazzi, a blinding flash going off time and time again. Fortunately he was eventually distracted by a game for the Wii which required a retreat to the living room, although every step of the way was photographed and recorded for prosperity. All the time he was clutching a yellow furry thing called a Puffle which Matty had given him.
Later that morning we found ourselves at Kidspace in Croyden, one of those indoor maze of climbing, rope, plastic and tunnels in garish colours that children vanish into to scream and chase and perform death-defying slides in foam encased safety. Eight of Sam's friends, plus Matty were in attendance for this much anticipated party. We had booked the party months ago and all we had to do was turn up with some children and a cake. The cake, Sam had specified, was to be in the form of a caterpillar with each segment a different colour and with each child's name written upon it. The staff at Kidspace were taking care of the rest, including the food, in the exclusive birthday party orientated Orange Pod. You will be unsurprised to know that I managed to find a table and a cup of coffee to retreat to.
That evening we left the happily exhausted birthday boy in the loving care of Pam, his grandmother, and attended a quiz night at the school. As previously mentioned in these pages, I love quizzes and become insufferably competitive when partaking in one. For years I have competed in the school quiz and for years my team has come second. This year, unlike last, I was not suffering Oxygen deprivation and a lifetime of accumulated trivia came to the fore. Yes I knew what Dane Godtfred Kirk Christiansen gave the world in 1958. Where was the Magna Carta signed? Easy. Ha! Who was Queen Elizabeth II first prime-minister? Ask me something challenging. The chemical symbol for Potassium? Okay. Fortunately I was a member of a team who knew such things. They also knew such useful things as the number of dominoes in a set. By the time of the final round, general knowledge, it was neck and neck Which superhero's secret identity is Steve Rogers? If my facial muscles were capable of it a huge grin would has spread across my overly smug face. We had that round nailed.
The final scores were totalled up and we, by the massive margin of 1 point, had snatched victory. At last my awesome talent had been recognised. As Polly and I wandered home, our victory bottles of wine clinking together, we considered that, all in all, it had been a pretty good day.
Until next time. . .
Answers – Lego. Runnymede. Winston Churchill. K. 28. Captain America.
Amidst the mass of wrapping paper covered presents was a blue camera from his great aunt Megan. From then on it was like being in bed with a Paparazzi, a blinding flash going off time and time again. Fortunately he was eventually distracted by a game for the Wii which required a retreat to the living room, although every step of the way was photographed and recorded for prosperity. All the time he was clutching a yellow furry thing called a Puffle which Matty had given him.
Later that morning we found ourselves at Kidspace in Croyden, one of those indoor maze of climbing, rope, plastic and tunnels in garish colours that children vanish into to scream and chase and perform death-defying slides in foam encased safety. Eight of Sam's friends, plus Matty were in attendance for this much anticipated party. We had booked the party months ago and all we had to do was turn up with some children and a cake. The cake, Sam had specified, was to be in the form of a caterpillar with each segment a different colour and with each child's name written upon it. The staff at Kidspace were taking care of the rest, including the food, in the exclusive birthday party orientated Orange Pod. You will be unsurprised to know that I managed to find a table and a cup of coffee to retreat to.
That evening we left the happily exhausted birthday boy in the loving care of Pam, his grandmother, and attended a quiz night at the school. As previously mentioned in these pages, I love quizzes and become insufferably competitive when partaking in one. For years I have competed in the school quiz and for years my team has come second. This year, unlike last, I was not suffering Oxygen deprivation and a lifetime of accumulated trivia came to the fore. Yes I knew what Dane Godtfred Kirk Christiansen gave the world in 1958. Where was the Magna Carta signed? Easy. Ha! Who was Queen Elizabeth II first prime-minister? Ask me something challenging. The chemical symbol for Potassium? Okay. Fortunately I was a member of a team who knew such things. They also knew such useful things as the number of dominoes in a set. By the time of the final round, general knowledge, it was neck and neck Which superhero's secret identity is Steve Rogers? If my facial muscles were capable of it a huge grin would has spread across my overly smug face. We had that round nailed.
The final scores were totalled up and we, by the massive margin of 1 point, had snatched victory. At last my awesome talent had been recognised. As Polly and I wandered home, our victory bottles of wine clinking together, we considered that, all in all, it had been a pretty good day.
Until next time. . .
Answers – Lego. Runnymede. Winston Churchill. K. 28. Captain America.
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.
Wednesday, 21 April 2010
We'e All Going To The Zoo Together
On Monday we went to London Zoo and contrary to my pessimistic expectation it didn't rain. In fact the weather was rather nice. We went with our friend C and her son, Matty's friend from school, taking advantage of the way we could all fit into our car because C's husband, an airline pilot, is currently stuck in Washington because of the Icelandic volcano.(Every volcanic aeroplane death cloud has a silver lining, apparently.)
London Zoo has changed since my youth. Gone are the elephants and Polar bears circling confined enclosures, going slowly mad. Instead the emphasis is on conservation with Gorilla Kingdoms and Rain Forest experiences. I particularly enjoyed the Night Life experience, which was not a disco but a chance to see all sorts of nocturnal creatures knocking about naturally.
I am slightly suspicious that many of the terrariums in the reptile house were empty despite signs saying they contained a Taiwanese Spitting snake, a Borneo Bouncing lizard or a Completely Invisible Sleeping newt. Occasionally I did spot a snake but it might quite easily have been a rubber one from the zoo souvenir shop. Telling me how cunningly they used camouflage didn't fool me.
Sam, having been to see the film How To Train Your Dragon was keen to see the Komodo dragons. He was disappointed to find they neither flew nor breathed fire but was slightly mollified when I told him how they could kill a buffalo. Matty found it difficult to choose a favourite animal, being torn between the giraffes and “those catty things with spots near the tigers.”
It was a good final day of the school holidays.
Until next time. . .
London Zoo has changed since my youth. Gone are the elephants and Polar bears circling confined enclosures, going slowly mad. Instead the emphasis is on conservation with Gorilla Kingdoms and Rain Forest experiences. I particularly enjoyed the Night Life experience, which was not a disco but a chance to see all sorts of nocturnal creatures knocking about naturally.
I am slightly suspicious that many of the terrariums in the reptile house were empty despite signs saying they contained a Taiwanese Spitting snake, a Borneo Bouncing lizard or a Completely Invisible Sleeping newt. Occasionally I did spot a snake but it might quite easily have been a rubber one from the zoo souvenir shop. Telling me how cunningly they used camouflage didn't fool me.
Sam, having been to see the film How To Train Your Dragon was keen to see the Komodo dragons. He was disappointed to find they neither flew nor breathed fire but was slightly mollified when I told him how they could kill a buffalo. Matty found it difficult to choose a favourite animal, being torn between the giraffes and “those catty things with spots near the tigers.”
It was a good final day of the school holidays.
Until next time. . .
Sunday, 18 April 2010
The Easter Break
Okay, I admit it, I'm a bad blogger. I have failed to post anything new for what seems like an age. My excuse? It's the Easter school holidays and I have two ebullient boys to keep entertained. Oh, and it's been (mostly) sunny so I've been sitting in the garden reading and trying not to get sunburn.
Last week we went for a picnic in Greenwich park to meet up with my aunt Megan. We picked up my nephews, the boys cousins Oscar and Ollie, on the way and arrived in time for lunch. Obviously the glorious weather we had been enjoying took a break and we ate our Scotch eggs and buffet style chicken pies in a light drizzle that slowly progressed to a torrential downpour. Fortunately I had my ultra-stylish wheelchair raincoat with me which Matty says makes me look like a toddler in a pushchair. At least I was dry. We took refuge in the fabulous Royal Observatory, enjoying the historical setting and the state of the art interactive displays before watching a show in the Planetarium.
To help the boys burn off some energy we enrolled them both in an intensive trampoline course for the last week. Matty, in particular, has shown an aptitude for the sport and attained his grade 5 certificate. We have also replaced our broken tiny garden trampoline with a slightly bigger unbroken one. Even as I write Sam has just bounced off it to swing on the washing line in an attempt to create his own theme park ride. We will now need to buy a new rotary dryer.
It was also this week that our washing machine chose to break down, making horrible grinding noises and refusing to perform its raison d'etre. We emptied our piggy bank and ordered a new one. It was then that our friends Catherine and Stuart told us that they had inherited a virtually brand new washing machine and it was sitting idle in their shed and would we like it. Would we ever. Stuart even came round and plumbed it in. This saved us a small fortune and we are very grateful. Now, has anyone got a fridge/freezer?
Now as the holiday draws to a close, the boys have an inset day tomorrow so have one extra day off school. We are taking them to London zoo so you can expect it to rain.
Until next time.
Last week we went for a picnic in Greenwich park to meet up with my aunt Megan. We picked up my nephews, the boys cousins Oscar and Ollie, on the way and arrived in time for lunch. Obviously the glorious weather we had been enjoying took a break and we ate our Scotch eggs and buffet style chicken pies in a light drizzle that slowly progressed to a torrential downpour. Fortunately I had my ultra-stylish wheelchair raincoat with me which Matty says makes me look like a toddler in a pushchair. At least I was dry. We took refuge in the fabulous Royal Observatory, enjoying the historical setting and the state of the art interactive displays before watching a show in the Planetarium.
To help the boys burn off some energy we enrolled them both in an intensive trampoline course for the last week. Matty, in particular, has shown an aptitude for the sport and attained his grade 5 certificate. We have also replaced our broken tiny garden trampoline with a slightly bigger unbroken one. Even as I write Sam has just bounced off it to swing on the washing line in an attempt to create his own theme park ride. We will now need to buy a new rotary dryer.
It was also this week that our washing machine chose to break down, making horrible grinding noises and refusing to perform its raison d'etre. We emptied our piggy bank and ordered a new one. It was then that our friends Catherine and Stuart told us that they had inherited a virtually brand new washing machine and it was sitting idle in their shed and would we like it. Would we ever. Stuart even came round and plumbed it in. This saved us a small fortune and we are very grateful. Now, has anyone got a fridge/freezer?
Now as the holiday draws to a close, the boys have an inset day tomorrow so have one extra day off school. We are taking them to London zoo so you can expect it to rain.
Until next time.
Wednesday, 31 March 2010
A Mile In Their Shoes
On the 21st March Polly, Sam and Matty ran the Sports Relief Mile along the Embankment in London. It was something of a last minute affair, Polly only having signed up a couple of days before hand, so she only committed to raising £50 for the charity. They all ran the mile with ease, circumnavigating Eddie Izzard (who was running yet another full marathon), and completing it in about 10 minutes. (Polly insists they could have run it faster but there were too many baby buggies in the way.)
Thank you to everyone who sponsored the three of them, we really appreciate your kindness, generosity and support The money goes to support important projects here in the UK and in some of the poorest countries in the world. You can find out more at http://www.sportrelief.com/ and if you would like to retrospectively sponsor Polly and the boys you can at http://www.mysportrelief.com/dealboysrunning . I am delighted to announce that the total raised so far by the three of them is £380. . . so far.
Until next time.
Thank you to everyone who sponsored the three of them, we really appreciate your kindness, generosity and support The money goes to support important projects here in the UK and in some of the poorest countries in the world. You can find out more at http://www.sportrelief.com/ and if you would like to retrospectively sponsor Polly and the boys you can at http://www.mysportrelief.com/dealboysrunning . I am delighted to announce that the total raised so far by the three of them is £380. . . so far.
Until next time.
Wednesday, 24 March 2010
Laser Death Pizza Extravaganza
I have been to hell and it is in Croydon. All right, perhaps I exaggerate, but not a lot. On Saturday we had Matty's 10th birthday party which was held at the Laser Quest franchise in the Colonnades on The Purley Way. From the outside the building looks like a rather bland office block but inside it is designed to resemble a Mississippi steamboat, I kid you not. The steamboat illusion does not pass deep inspection and is soon revealed to be mostly a front for an extremely noisy amusement arcade replete with the latest shoot-'em-up games called things like Zombie Killer 4 and Death Jungle Zone 3. Each game comes with at least one machine gun and absolutely no volume control. Interspersed with the death dealing mayhem machines were driving games that gave very little consideration to the highway code called Death Racer VII or Mission Road Kill X or such like. Also dotted around the Stygian hall were several non-working pool and air-hockey tables serving primarily as surfaces for teenagers to lounge against and as anti-wheelchair obstacles. The thermostat was set to 'boil blood' level but they economised by having the lighting set at a level that required an infra-red night scope to see more than a few murky feet. Along one side of the arcade was the Laser Quest zone where groups of identical looking pre-teens loitered whilst awaiting their turn to dispense laser justice upon each other.
Matty and his micro-army of 9 laser armed friends vanished into the kill-zone to enact Armageddon while I hunted vainly for a cup of coffee. Eventually I took refuge in the party room we had reserved and was at last able to have a conversation that did not require shouting over the death throes of machine gunned zombies. After an hour or so Matty's army retired from the battlefield to devour hot-dogs and relive successful ambushes. Oh to be 10 again.
On Monday it was Matty's actual birthday and we took him (and Sam, obviously) out for tea. You put your taste-buds in the lap of the gods when you let a 10-year-old choose the restaurant you dine in, so it was with a sense of 'it could have been worse' that I trundled into Pizza Hut. I am not a huge fan of Pizza Hut so I was pleasantly surprised to find on the menu some relatively interesting looking Tuscani style pizzas. I settled on the Pollo Portobello with the “thinnest, lightest, crispiest pizza base” and “recipes inspired from the heart of Italy.” Perfecto! Unfortunately Matty had been swayed by the advertising that induced him to try a pizza surrounded by “a ring of 28 individual doughy bites bursting with cheese.“ Such a divine culinary experience only comes with pizzas the size of truck tyres and so he pleaded with me to share a vast meat-feast deep pan pizza. I closed my menu with a small sigh and said that I'd be delighted to share. It was his birthday after all and considering the years of pleasure he has given me it was a tiny sacrifice. As he sat, grinning from ear to ear, chewing on peperoni flavoured stringy bits, he thanked us for taking him out to 'a posh restaurant'. Is it any wonder I love him?
PS - Only have the ring of 28 individual doughy bites bursting with cheese if you enjoy cheesy flavoured chewing gum.
Until next time.
Matty and his micro-army of 9 laser armed friends vanished into the kill-zone to enact Armageddon while I hunted vainly for a cup of coffee. Eventually I took refuge in the party room we had reserved and was at last able to have a conversation that did not require shouting over the death throes of machine gunned zombies. After an hour or so Matty's army retired from the battlefield to devour hot-dogs and relive successful ambushes. Oh to be 10 again.
On Monday it was Matty's actual birthday and we took him (and Sam, obviously) out for tea. You put your taste-buds in the lap of the gods when you let a 10-year-old choose the restaurant you dine in, so it was with a sense of 'it could have been worse' that I trundled into Pizza Hut. I am not a huge fan of Pizza Hut so I was pleasantly surprised to find on the menu some relatively interesting looking Tuscani style pizzas. I settled on the Pollo Portobello with the “thinnest, lightest, crispiest pizza base” and “recipes inspired from the heart of Italy.” Perfecto! Unfortunately Matty had been swayed by the advertising that induced him to try a pizza surrounded by “a ring of 28 individual doughy bites bursting with cheese.“ Such a divine culinary experience only comes with pizzas the size of truck tyres and so he pleaded with me to share a vast meat-feast deep pan pizza. I closed my menu with a small sigh and said that I'd be delighted to share. It was his birthday after all and considering the years of pleasure he has given me it was a tiny sacrifice. As he sat, grinning from ear to ear, chewing on peperoni flavoured stringy bits, he thanked us for taking him out to 'a posh restaurant'. Is it any wonder I love him?
PS - Only have the ring of 28 individual doughy bites bursting with cheese if you enjoy cheesy flavoured chewing gum.
Until next time.
Monday, 15 March 2010
Spring Is Springing
I feel a little as though I am coming out of hibernation. As the weather improves and the temperature slowly climbs I have been able to get out a little more. My mother came to visit and Polly and I took her for lunch at the local garden centre (rock n roll, hey). Then at the weekend I went to collect Sam from a party and also chased the boys around the park on the their bikes. (This took a while because Sam can only ride in a straight line and crashes dramatically at the slightest curve.)
Both Polly and I are benefiting from me having the new BiPap mask. So far the alarm has not gone off once since my return from the Brompton. Getting a good nights sleep has had a reinvigorating effect; Polly has taken up running again. She has been looking through catalogues and trying to fathom which running outfit will not emphasize her bottom.
I am pleased to report that my regular carer, Kolapo, has returned to work. He is much recovered from his injured back but is not going to be working 7 days a week any more. While he has been away we have had a series of other carers visiting. One of these was a very nice man called Balham. At the end of his stint with us Polly did what she had been dreading doing all week, as Balham departed she bid him farewell and wished him a good week saying, “Goodnight, Mitcham!”
Until next time.
Both Polly and I are benefiting from me having the new BiPap mask. So far the alarm has not gone off once since my return from the Brompton. Getting a good nights sleep has had a reinvigorating effect; Polly has taken up running again. She has been looking through catalogues and trying to fathom which running outfit will not emphasize her bottom.
I am pleased to report that my regular carer, Kolapo, has returned to work. He is much recovered from his injured back but is not going to be working 7 days a week any more. While he has been away we have had a series of other carers visiting. One of these was a very nice man called Balham. At the end of his stint with us Polly did what she had been dreading doing all week, as Balham departed she bid him farewell and wished him a good week saying, “Goodnight, Mitcham!”
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. . .
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