And So To Bed

I'm writing this at 10.30pm which is well past my bedtime. Things were going so well. It had been a busy and fun weekend; we'd had the local carnival on Saturday where the boys had gone on the Ghost Train and climbed inside inflatable plastic balls to roll around a huge paddling pool. We'd watched reluctant birds of prey take part in a falconry display like sulky teenagers begrudgingly performing their party piece at the increasingly irate behest of their parent. We'd watched marching bands and cheerleaders put on displays helped and hindered by an intermittent fault on the PA. All jolly good fun. On Sunday the boys and I watched Polly run a 10k race around and around our local park which took up 65 minutes and 31 seconds of a sunny morning. The race was billed as a fun run which conjures up images of people dressed as Buzz Lightyear jogging alongside groups of firemen chained together waving buckets to collect coins for kittens stuck up trees. Forget that. This turned out to be an excuse for the local running club to put themselves through their paces under race conditions. There was a lot of Lycra on display. The male winner whizzed home in just 31 minutes and 39 seconds. Polly came in a very respectable mere 15 minutes after the fastest female.

Now the reason I tell you all this so past my bedtime is because I am awaiting an engineer to come and repair the hoist in the bedroom. The carers had come as usual to lay me down to rest and we were at the final stage of hoisting me from the wheelchair into the bed. The hoist, after some coaxing, lifted me airborne and over to the bed. What it would not do was to lower me down on to the aforementioned bed. I was left hovering like a fatigued Thunderbirds puppet two feet above my mattress. No amount of button pressing had any effect. The emergency release cord had mysteriously disappeared so I had no alternative but to dangle helplessly while Polly and the carers tried turning the power on and off and swinging me around a bit in an attempt to unstick whatever was stuck. After a few minutes I was beginning to feel distinctly uncomfortable, scrunched up in the sling as if I was a particularly large and unappealing fisherman's catch of the day.

Eventually, just at the point where I was considering having the straps of the sling cut through so as to allow me to tumble down on to the bed with a hope that the resulting dislocation of joints wouldn't be too painful, I had a brainwave. My super-duper wheelchair is capable of raising up several feet in the air. By carefully moving the hoist and therefore myself over the chair and by me performing a kind of wriggling contortionist act as the carers eased the sling off around me I would only need to fall inches. With a defiance of health and safety and with a bodily dexterity that would surely have earned me a place in the semi-finals of Britain's Got Talent I fell gracefully in to my risen wheelchair seat. Meanwhile Polly rang the emergency engineer.

The next day. . .

Well, the engineer came at 11.00pm, cheerfully declaring that he had had one foot in the bath when his supervisor rang. Apparently a previous engineer had fitted the strap back to front causing the whole kit and caboodle to get tangled up. It took him 20 minutes to undo the mess. It took Polly a further 20 minutes to transfer me to bed on her own, the carers having long since departed.

At least the emergency engineer turned up quickly and fixed the problem efficiently and without a fuss, unlike another company who have a contract to maintain my wheelchair. More details forthwith.

Until next time.

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...

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.

Not Just A Mattress

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

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

Bye until next time.

Perchance To Dream

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

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

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

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

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

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

In The Dead Of Night

Tonight is another night nurse night. Things have improve from the earliest encounters. (See here, here, and here, for previous posts about the night nurse saga.) Aside from some rather iffy understanding regarding how electric over-blankets work and me trying to find the doorbell to press and summon the nurse I have made some progress in getting a nights sleep. Polly is also getting a better nights sleep when she moves to the sofa-bed but the jury is still out on whether the disruption is worth it. Mind you, after last night she will probably be grateful for any sleep at all.

I was awoken at 4.30 this morning by an irate Polly. “What is it now?” she demanded of me. “Do you want a painkiller or what?” I swam into wakefulness and croaked, “what?” (I'm not at my most loquacious at that time of morning.) My mouth was sandpaper dry so I asked if I could have a sip of water. The reaction I got was akin to me having asked her to rustle up a grilled sturgeon with peeled grapes on a bed of larks tongue and slipper orchid petals whilst gently massaging my toes in calf-skin mittens. There are US army patented incendiary devices that give off less heat and fury than my beloved wife early this morning. Bemused I responded wittily with another “what?”

Polly stomped around the bed (or rather as she describes it, climbed around the end of the metal framed bedstead, negotiated the air-mattress pump, stubbed her toe on a wheelchair wheel, tripped over the charging cable and caught her hand in a ventilator hose) and shoved a glass under my nose and indelicately inserted a straw between my parched lips.

“Thank you, darling,” I said and prepared to drift off back to sleep. Polly seemed to find this offensive.”Oh no you don't,” she said through gritted teeth. “Five times! Five times you have woken me up. Don't you dare just go back to sleep.” “What?” I replied. (I swear it was all I could think of to say.) “I haven't done anything.” Talk about 'light the blue touch-paper'. She went incandescent. Apparently I had woken her several times through out the night to move my leg, shoulder or arm. I had absolutely no memory of this, I promise you.

Polly listed the catalogue of interruptions she had endured. “ You keep waking me up by shouting Polly, Polly, help me! Help me! Move my shoulder! Help! Help!” When I intimated that she may be exaggerating I inadvertently took my life in my hands. “It's all right for you,” she growled. “You just go straight back to sleep! I, on the other hand, am left wide awake, unable to go back to sleep, because I'm listening out for for your every groan, creek or fart in case you are suffocating or choking or something!”

All I could think to say was “What?”

Polly stomped back around the bed, stubbing her toe on the battery charger, and crashed huffily back under her duvet. “If you just go back to sleep I will poke you with a sharp stick.” I was going to ask her to scratch my shoulder blade but thought better of it. I closed my eyes instead.

So, tonight, as she snuggles down on the sofa-bed, I hope she appreciates the sacrifice I'm making. Instead of simply calling out for help I will have to press the button on my doorbell and wait for the nurse. That's love that is.

Sleep well.

Night Nurse Night Three

Last night, at about 9.00pm, after surgery had closed, Dr Toosy, my GP, dropped in to go through and reassess my medication. We have tweaked and adjusted the list with the aim of getting me a decent nights sleep. And since last night was the night of the night nurse night three I could really do with one. If you've followed the story on Night Nurse and Night Nurse Night Two you may feel a modicum of sympathy.

Polly and I have continued trying to make this work for both of us. Polly has forsaken her princess and the pea act and tried sleeping on the sofa-bed mattress which she had laid on top of a futon and stabilized with the sofa cushions. And, after years sleeping along side me, she has found the absence of the continual rhythmic noise of my BiPap ventilator distinctly off-putting, so she moved the dehumidifier into the living room with her and set it to maximum so the ensuing hum could lull her to sleep.

Meanwhile, at my end of the flat, I had been equipped with a wireless doorbell and the receiver was placed in the kitchen. This meant the nurse could ensconce herself in relative comfort with the kettle and enough space to lay out her comprehensive collection of celebrity gossip magazines and there would be no need to bathe the hall outside my bedroom with a million candle powered floodlight so she had light enough to read them. All that need happen should I need her was for me to press the button on the doorbell and she could forsake Jennifer Aniston for a moment and shuffle up the hallway to attend to my needs. Simple. You'd think so, wouldn't you.

Now, as has been mentioned in previous posts, I feel the cold and lack the means to regulate my temperature efficiently. I also find warmth to have a analgesic effect, especially when I am tired and trying to get to sleep. To this end I have an electric over-blanket inside my duvet cover. I usually have it set at maximum (9) when I first get into bed and turn it to a lower setting after a while. Last night Polly showed the nurse the simple control for the blanket and explained that I'd like it turned down to about 3 in an hour or so. The nurse nodded sagely and returned to the kitchen and to the trials and tribulations of Lily Allen.

An hour or so later I put down my book about television in the 1970s, sated with memories of Kojak, Alias Smith and Jones and Fawlty Towers, and now ready for sleep. The bed was beginning to get uncomfortably warm so I rang my doorbell and heard the bell chime in the kitchen. The nurse came down the hall and politely asked how she could help. I asked for a sip of water and for her to move my arm a little and turn down the electric over-blanket to it's number 3 setting. Moments later I was drifting off to sleep.

I awoke from a dream wherein I was an oven-ready chicken being roasted for dinner. Bathed in sweat I realised that I was being cooked in bed by my blanket which must still be on at its highest setting. I fumbled for my doorbell and summoned the nurse. Once again I asked her to turn down the blanket to the number 3. She fiddled with the control and confirmed it was set on 3. Relieved I slipped back to sleep.

Sometime later I was in a sauna with the door locked on the outside and the temperature indicator reading 'You Are About To Melt'. For some reason my night time carer had failed to actually turn the blanket down it seemed. I rang my bell. Moments later she was assuring me the control was set on 3. Perhaps my faulty body temperature control was even worse than usual. I asked her to turn the blanket down to 2. She did so.

The inside of the volcano was very hot indeed. Molten lava dripped onto my securely bound body. I struggled into wakefulness, bathed in sweat and entangled in my red hot duvet. Once again I called for help and once again I was assured that the control was set at 2. This was very strange and very very uncomfortably.
By the time I had walked through the Kalahari desert dressed as a long-haired pink kitten in a frogman's suit and later been barbecued over a pit of burning coals whilst wrapped in a woolly mammoth's fur coat I was beginning to become stressed. Surely my internal body temperature control wasn't that screwed up?

Puzzled, I asked for the controller to be placed in my hand by the nurse, who was by now regarding me as demented, so I could turn it off myself. As the bed finally began cool I slipped into an uneasy sleep. A glance at the clock told me it was 5am.

An infeasibly short time later Kalepo and Godfrey were calling me awake. As I clawed my way to consciousness I asked to see the controller that had caused me such heated distress all through the night; the controller the nurse had assured me was turned right down. It wasn't of course, it was still set at 9.

So what had happened? Well, it's possible that the nurse was getting some perverse pleasure from torturing me but I'm willing to concede that that is improbable (not to mention libellous).A more likely explanation is that she confused the on/off slider switch which has 3 stages with the temperature dial which has 9. When I asked her to set it to 3 or 2 she thought she had, but in actual fact she had set it to either 75 minutes or 12 hours. It does beg the question why she failed to notice the dial but more significantly why after the third or fourth time I called her and asked her to check it was turned down she didn't wonder about looking at the rest of the controller, which is, after all, only the size of my hand. Could it be that she thought I was making a fuss over nothing? Or, more likely, that she thought I was a bit simple and kept asking her to the same thing over and over again because I didn't know what temperature I actually wanted. I don't know. What I do know is that it was yet another long and difficult night.

Next time it'll be Night Nurse Night Night Four. Fourth time lucky?

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 Fabulous Adventures Of Wheelchair Man

Sometimes you paint yourself into a corner. I, like countless other parents around the globe, tell my children bedtime stories. And when I can't stand another Horrid Henry or Captain Underpants story I make one up with the help of Matty and Sam. By far and away the favourite of these made up bedtime stories are The Fabulous Adventures of Wheelchair Man, in which the eponymous hero and his two sidekicks, Speedster Sam and Destroyer, save the world and, not infrequently, the entire solar system. Wheelchair Man is a mild mannered father of two with a wheelchair that, at the press of a button, transforms into a flying, laser shooting Superchair. The boys, who chose their own hero names and powers, super speed and super strength respectively, assist their father in his missions to save the world and demand disabled access to the Fortress of Evil. All the adventures, alien invasion not withstanding, have to be fitted in around school and homework, or, as in the case of the current adventure, during school holidays, because saving the world is all well and good but if you can't read and write how will you be able to understand the instruction manual of a top secret space ship?

The stories have a somewhat eccentric narrative because both Matty and Sam like to fully participate in the telling, so anything from monkeys to red-armoured scorpion robots have to be incorporated. Matty, who has improvisational skills to dazzle Robin Williams, likes epic adventures with lots of battles and cliffhangers. Sam is currently most concerned with finding the exact right word to initiate the transformation from school boy to superhero. “Transformulation!” seems to do the trick at the moment. However, since each metamorphosis requires getting out of bed and spinning around whilst shouting the trigger word, we tend to limit the number of times school boy Sam is required to become Speedster Sam each episode.

Currently, the super team are on a remote tropical island helping a team of scientists to install 'the tower of electricity', which will help solve the worlds energy problems. They've already battled pirates and now, whilst exploring the island and rescuing a trapped monkey, have been caught in a deadly trap themselves. With Destroyer down a spike filled pit, Speedster Sam entangled in a net hanging from a tree, and Wheelchair Man faced with a ramp steeper than 1:12 (and a huge number of guns), can they escape? If yes, then how? Let me know, there are only a couple of hours until bedtime!

An Alarming Night

Just in case you think that my life is all fun fun fun, you might enjoy hearing about last night. Every night since everything went pear shaped a couple of weeks a go (see A Series Of Unfortunate Events) two carers have come each night to help me get to bed. Every night that is except last night. At 9.00 pm I reluctantly started to watch Poirot, knowing that Kalepo and Godfrey would arrive long before the murder was committed, let alone before Poirot's little grey cells could unmask the killer. The murder came and went, no carers. Alibis were established, still no carers. Motives were revealed, still a severe lack of carers. Suspects were gathered together and alibis were discredited, carers still absent. The killer unmasked, justice achieved, no carers. It's now 11.00pm and Poirot-like Polly and I deduce that the carers aren't coming. Polly then does the job of two men and gets me to bed.

I surrender myself in to the arms of Morpheus and have an uninterrupted and blissful nights sleep. Or alternatively the BiPap alarm goes off just as I drift away. And then it goes off again. And again and again through out the night. Oh, and to make things perfect my air mattress slowly deflates until I'm lying on the metal bed frame.

Today a series of engineers have arrived to repair and replace things. The air mattress pump has been replaced and the BiPap's electronic log examined. It turns out the alarm only went off 269 times during the night so I was obviously making a fuss about nothing but they replaced it anyway. Care managers and district nurses have been contacted, berated and informed of needs. Polly and I have made our way through the day in a sleep addled haze.

I've got to go now, Matty is doing his homework and wants to know the difference between regular and irregular verbs when using the third person plural. He's 8 for crying out loud! Shouldn't he be colouring in pictures and trying not to cross the lines?

Now We're Cooking

Just a very quick post tonight. The boys have both been away on sleepovers. It has been wondrous quiet. Polly has used the time to cook a vegetable Dansak for 80 people, in preparation for her birthday party in a couple of weeks time. She's also made Channa Bhajee and Dall for 80 as well so I hope everyone comes or guess what I'll be having for tea until Christmas next year.

Oh, and I've realised why I'm not sleeping so well. My air mattress is slowly deflating during the night. I'm ending up lying on a metal bed frame which seems to defeat the point of the hugely expensive equipment meant to facilitate a decent (bed sore free) night. Also the alarm keeps going off on the BiPap whenever I pull the duvet up near my face because it thinks I'm suffocating. If it keeps doing it Polly says she'll give it a reason to go off. Sweet dreams.

Love And Biscuits

One more story about the early days of my relationship with my mother-in-law, Pam. In the run up to the wedding Polly was busy converting my flat into our home. She was treading the fine line between respecting my tastes and possessions and despairing of my tastes and possessions. We eventually compromised, in that I surrendered completely with one proviso, that we keep my books. I had hundreds and hundreds of books. One wall in the living room was lined floor to ceiling with shelves, double stacked and there were two more bookcases in the corner. In the bedroom, in an alcove were another two long shelves and there was a bookcase in the hallway. Yes, I know, all very geeky, but there you go. I'd love to be able to say that all of them were philosophical treatise and books by Russian authors exploring the nature of humanity and suffering. Truth be told, there were a fair number of John Grisham and Terry Pratchett.

Pam came to visit and assess her daughters prospective domiciliary arrangements. Her eyes brightened when she saw the books. “Oh lovely,” she said. “The church is having jumble sale. There's bound to be a bookstall.” I don't think she heard my whimper.

A. few minutes later she and Polly were surveying the bedroom so that Polly could seek her advice on the best place to position the double bed we intended to purchase. Pam looked thoughtful for a few moments and then said, perfectly seriously, ”the room's quite small. Have you thought about bunk beds?” Polly had to help me clean up the mouthful of coffee I had sprayed across the living room.

Today, as Pam came over to help look after her grandchildren while Polly was at work, and amidst the frequent offers to make coffee and whilst declining the full English breakfast she wanted to cook for me, I felt a wave of affection for this wonderful and generous woman who has so completely taken me into her life and filled it with love and biscuits.

A Risky Business

So there I am, sitting on the loo when the front door opens as a carer arrives. It was a quarter of an hour before l was expecting them but hey-ho. A moment or so later the door opens again and the second carer arrives. Then the doorbell goes and two more women arrive. There is a polite knock on the bathroom door and then four women enter. Polly comes in too. So now there are six of us in our not so big bathroom. I pretend I'm not sat on the lavatory. It doesn't work. Every one smiles at me.”Hello,” I say weakly. “Hello,” they chorus.

It turns out I'm having a risk assessment done. There are two carers to do the hoisting, washing and getting me into bed, one to carry out the risk assessment and one to observe, presumably to step in. if it all gets too risky. Every stage of the transfer was meticulously noted down (you put the shoulder straps on first apparently – it might be risky if you didn't). I washed and brushed my teeth without hurting myself or others. (There was a dodgy moment when my electric toothbrush nearly slipped and took my eye out, but l recovered the situation and no one was harmed.) My entourage followed me to the bedroom and assessed the risk of entering. The all clear was given and they hoisted me, using the approved method, on to the bed. I'm happy to report that nothing untoward occurred and that it was deemed risk free enough for me to go to sleep. Phew!

So now I've got an evening care plan being drawn up. Carers will be able to refer to it and know exactly what they need to do to get me safely to bed with out hunting me or themselves. I'm only sorry I forgot to mention that I usually spend a few minutes juggling flaming razor sharp petrol powered chainsaws before I get ready for bed and that I expect the carers to help me light them.

In to the NHS

So there I was lying in bed on Saturday night. We'd had a pleasant evening, the boys had gone to bed and Polly and I had enjoyed a curry and watched TV and everything was fine. I'd dozed off but was woken by a dull ache in my left side. I did the manly thing and ignored it. Suddenly I'm sort of sick. I say sort of because what came up was clear but with flecks of blood in it: The pain grew worse. Polly woke up at the sound of me gagging and once she saw the blood realised I wasn't attention seeking. “Oh great”, she groaned. “We manage less than a week with out a medical crisis”. At the crack of dawn she rang the doctor and I stoically endured the pain and gagging. Croy-Doc, our out of hours GP service rushed into action and dashed to my sickbed by 2.00pm that afternoon. He looked at me cautiously and prodded my side and took my temperature and did the usual doctory things. “I'll call an ambulance”, he said gravely.

When the ambulance arrived, the paramedic and the technician looked at me lying in bed and gazed anxiously at the ventilator I was attached to via a hose and face mask. “Can he walk?” they asked hopefully. Once Polly had explained that I couldn't walk, stand, hop, skip or jump they decided to bring in the stretcher bed. My friend Stewart, who is a police officer and regards the other emergency services with respect but with the suspicion that they are only doing the job they do because they couldn't get into the police service, pointed out that they might get the thing in but they wouldn't get it out without tipping me on to the floor. The corners were too tight. Eventually I could stand it no longer and said that I'd get up and into the wheelchair. (You see I'm THAT brave.)

Once in the ambulance they spent several minutes securing the wheelchair. “There”, they said with satisfaction, “That's not going anywhere.” I, on the other hand, was totally unsecured. “What about Stephen?”, asked Polly. “Hold on tight,” I was advised. I did.

St Helier, our local NHS trust hospital, was built in the 1930`s It was originally an impressive art-deco structure, perched at the top of Rose Hill. Viewed from the south it was quite spectacular, so the council built a road on the north side, so now all you see is the back of the building, a rambling jumble of extensions and incongruous new add ons. I was guided into the ER and had a canular fitted to my arm so they could take blood. After a while we were moved to the Clinical Assessment Unit from where I was sent to X-Ray and had an Echo-cardiogram, labelled Nil by mouth and left to watch Polly gleefully drink a cup of tea. Sometime later a doctor came to say they would be admitting me to ward B6. My heart sank. Eight years a go I had nearly died in ward B6, if my sister had not been visiting me and noticed I'd virtually stopped breathing, I would not be here writing this. Polly would regularly come in to find several doses of medication placed out of reach on my locker. The nurses would sorrowfully tell her that I wouldn't take my medicine, “He can't move!” she'd explain again and again. “He didn't say anything,” they would counter. “He has a tracheotomy! He can't speak.”

Eight years a go the ward was filthy. There were specks of blood on the floor and walls. Suction tubes that are inserted into the lungs to remove gunk were used and reused, equipment didn't work and patients with infectious diseases were placed in beds next to patients with pneumonia. I had been moved to the far end of the ward, presumably to get better on own. Instead I caught double pneumonia. Eventually I was transferred to the Royal Brompton Hospital in an ambulance complete with blues and twos.

Eight years later the ward had changed beyond recognition. Gone was the huge single room lined with beds with a nurses station in the middle. Instead the ward is divided in to bays and single bed rooms, the whole place is decorated in a subtle shade of anti-suicide green. The place looked reassuringly clean. I was allocated bed 10, one of four in a bay. They took away the Nil by mouth sign and I was allowed a much needed cup of coffee.

Hospitals are not designed for disabled people. No, it's true. They are designed for the sick, the frail and the injured. Disabled people upset the system. They find it difficult to distinguish between the disability and the illness you've been admitted for. A case in point: my ventilator. I use a machine called a BiPap. It pushes air into my lungs and then negative air pressure draws the air out, the result is that the base of the lung is inflated and carbon dioxide is expelled. Ward B6 is the hospitals specialist Respiratory ward. The nurses are trained in using all kinds of ventilators. Except, apparently mine. The nurses looked at it with a mixture of curiosity and suspicion. The control panel looks as if it has been stolen from the bridge of the Starship Enterprise and the mask has a tangle of webbing that can make the Gordian knot look like something tied by a brownie. The nurses begged Polly to stay and set it up.

The next problem was getting me to bed.

More to come tomorrow if you can bare to wait.

Next time - The Diagnosis

A Marathon Day (Part Three)

The Long Way Home.

Muscular Dystrophy had arranged a reception for those runners running to raise money for the charity. It was held at Westminster Central Hall, a building I have been to and worked in many times. We crossed Parliament Square and walked along side the Queen Elizabeth II Conference Centre, which took us over one of the worst things you can inflict on a wheelchair user - cobbles. Every turn of the wheels results in teeth-shattering, bone jarring misery. They might look quaint and olde-worlde but any architect or planner who wilfully designs them into their landscaping should be made to sit in a wheelchair and rolled over them for a while. Once they have collected up the bits of wheelchair that have shaken loose they will almost certainly appreciate the merits of Tar-Mac.

The reception was held in the basement of the labyrinthine building and when we eventually found it we settled down to wait for Polly and Anna. We didn't have long to wait, they arrived flushed and exhausted, proudly wearing their medals and after receiving a huge cheer from the gathered supporters settled down to a plate of spagetti bolognaise and a sports massage. Anna went off with her family and Polly, Darren, Paul and I headed for home.

We negotiated the three lifts at Westminster station and hopped onto the Jubilee line. (We were getting quite slick at this underground lark by now). To be honest Polly didn't so much hop as hobble. Checking that there was a disabled access sign, we alighted at Waterloo and followed the signs for the Northern line. We navigated a maze of tunnels and moving walkways until we came to a dead end. Puzzled, we pressed the conveniently placed assistance button on an intercom that connected directly to customer services and were told that there was no wheelchair accessible route between the Jubilee and Northern lines. Wait a sec`, the Northern Line is wheelchair accessible? Yes. And the Jubilee line is wheelchair accessible? Yes. But you can't get from one line to the other? No. Now I know it's been a long time since my O level maths but unless there has been a huge revision of the rules of topology then that makes no sense. Er... ? So we retraced our way back through the maze, with Polly moaning that she'd already run more than 26 miles today and that this was the last bloody straw. Defeated, we limped back on to the Jubilee line (we'd given up on hopping) and made our way back to London Bridge.

We eventually made it home and Paul and Darren took their leave. Exhaustion and post-race anti-climax left Polly looking a little dejected. I asked her what the matter was. She was a bit disappointed with her time of 6 hours 13 minutes. I pointed out that the last week had hardly been ideal preparation for such a marathon event and that there were several thousand runners behind her. Suddenly she smiled. I did beat the man dressed as a McCain's oven chip!

Epilogue

That night Polly and I slept soundly. Ha!

That was the night of all nights that the air mattress on my bed chose to break down. We were greeted by the sound of a concrete mixer crossed with a pressure hose. The pump was labouring fruitlessly to inflate the mattress and was glowing red hot. I spent the night on the metal frame whilst Polly had to move me intermittently. How we laughed.

Up and at 'em

Let me tell you about my morning. At about 7.00am one or other of the children comes in to demand breakfast and I become aware of a pain in my hip. I've been lying on my right side all night and perhaps there is a crease in the sheet. Now I am aware of the pain I can't ignore it. The painkillers I've taken the night before have long since worn off and it feels as if the hip is burning. I try to move but the air mattress absorbs my efforts and if anything the pain is increasing. I finally have to ask Polly to help me, which is something I hate to do. She tugs and pulls at the sheet but can't un-crease it so I pretend it has helped and let her get on with seeing to the boys. The next two hours are anything but relaxing as I wait for the carers to arrive at 9.00am.

Jerry and Anna sign in and tootle about for a bit. Eventually they come and start the process of getting me up. First the duvet is removed and then the electric bed is tilted. Then Anna lifts and swings my legs out of the bed. The head end is then raised and Jerry sits me upright. My shoes are placed on my feet so I can grip the floor to balance and the ventilator is unstrapped and the plaster protecting my nose from the pressure mask is removed. I take a sip of water through a straw and begin to feel the burning in my hip ease. Jerry helps me move my leg in to position and Anna manoeuvres the electric wheelchair so that my knee is pushed along the side of the bed. The bed is raised and I do a controlled sideways fall in to the chair. Jerry crosses my legs at the ankle to stop me running over them and I make my way to the bathroom.

The transfer to the toilet takes about five minutes. I usually manage on my own but this morning I need Jerry to place my hand on the handrail. I make the transfer and relax a few moments. A couple of minutes later I call for Anna or Jerry to come. Jerry responds and places a glide sheet on the chair and then leaves again. At this point S, the little one, barges in and demands the potty.I start the transfer back. The process usually another five or six minutes but this morning I get stuck as I have been doing so more frequently recently and need to call for help. Jerry and Anna help me brace my arm on the chairs armrest and with a grating twist of my shoulder I slide uncomfortably on to the seat just enough to balance. Jerry and Anna leave me to cautiously negotiate my way to the handrail where I can heave myself fully on to the chair.

They wash and shave me and then we make our way back to the bedroom. Getting dressed takes several more minutes but is done with practised ease. Getting my trousers on is the only unorthodox handling, a procedure that involves tipping me bodily forward on to the bed head first and whipping them up before I fall back down. Once dressed I make my way to the living room for breakfast. Now I can start my day. Polly, of course, has already been going for hours.

All the best and 'bye for now.