Stephend

Spring Is Springing

2010-03-15T16:23:00Z

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.

The Boy In The Bubble

2010-03-06T12:44:00Z

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. . .

Cometh The Man

2010-03-01T14:09:00Z

A few weeks ago we were assessed by a surveyor who came and told we have a condensation problem in out flat. We were aware of this because we had spotted the patch of black mold growing in the corner of our bedroom and behind various wardrobes. The surveyor, a nice woman, surveyed the BiPap, the electric bed, the air-mattress, the hoist, the wheelchair, the battery charger, the cough-assist machine and nebuliser, and explained that we have too much equipment in too small a space. The air, she said, could not circulate and we need more space. We are not, she said, adequately housed. Contact your MP (Member of Parliament), she advised. And, having exhausted other avenues and being very suggestible, that is exactly what we did.

To that end, last week, we were visited by Tom Brake, Liberal Democrat Member of Parliament for Carshalton and Wallington at home. He came and drank a cup of tea, declined a plate of biscuits, discussed the forthcoming general election and listened attentively while we explained the situation. We showed him a folder full of letters from medical type people saying we need more space. We presented to him two growing children. We told him of some the problems we face on a day-to-day basis. We explained how the cramped conditions made it difficult for carers to work safely and how they had to squeeze past the end of the bed to perform their duties. Tom nodded in all the right places and said that although he could make no promises he would see what he could do.

A few days later Tom sent us a letter summarizing our meeting. He asked us to grant authorisation to someone on the council to access our files and in addition to following up on our request for rehousing and, in the short term, a suitable hoist. made this rather surreal recommendation -

“allocation of carers who are small enough to squeeze into the currently very confined space.”

This is a splendid example of parliamentary lateral thinking. We don't really need larger accommodation we just need smaller people. Brilliant. It seems an odd thing to focus on but that's probably why I've never sought public office, I just don't have that capacity for problem solving.

Obviously I will keep you informed of any progress. I'll also let you know if I see any signs of carer shrinkage.

Until next time.

Breakdown

2010-02-22T20:54:00Z

I had a breakdown in the bathroom early last week. It took three women to get me out of there. It all started when I was transferring from the toilet back to the wheelchair. The screen on the wheelchair controller flashed up a message informing me that there was a 'brake error 1301'. The wheelchair refused to move, ceasing to perform its primary function and becoming simply a chair. A chair located in the bathroom. The two carers and Polly manhandled the chair out of bathroom and into the living room by disengaging the motor and heaving and pushing the ungainly machine using brute force. Polly referred to the manual and looked up 'brake error 1301'. The manual helpfully told her that there was a problem with the brakes. Armed with this inciteful information Polly poked and pulled various wires and connections to no effect. Eventually she removed a panel on the back of the chair and prodded connectors hopefully. Suddenly the chair sprang back into life. The carers stood in open-mouthed appreciation of her technical abilities. Polly Deal, the 4^th emergency service.

I'm having problems writing at the moment which is why these posts are a bit short and a bit spaced out. Normal service will be resumed soon, I hope. Thanks for your patience.

Bumped

2010-01-31T12:34:00Z

Apologies for the lack of posts over the last week or so. What can I say? It's January. It's cold, grey and generally miserable. If there was any justice in the world I would be in Mauritius.

I am not, incidentally, in hospital. I was due to go in to the Royal Brompton on Tuesday so they could fiddle around with my BiPap settings and play with my mask in an attempt to sort out my CO2 levels. However I was bumped from my rightful bed by some sick person who was deemed to be in greater need than me. I was all psyched up and ready to go, ebooks downloaded and iPod charged, when the bed manager rang to say don't come.

Polly had to cancel her 'girls night' and we are both resigned to another couple of weeks of disturbed sleep with the BiPap alarm going off on average 17 times a night. It is worse for Polly because the high-pitched alarm doesn't always wake me but it does her. She has taken to kicking me in the back so we can share the experience. The sooner we can get it all sorted the sooner my bruises will heal.

I'll keep you updated.

Still Ticking Along

2010-01-21T15:16:00Z

Yesterday I made the trip to Kings Hospital for the specialist FSH clinic with Dr Rose and his team. Once we had negotiated the near impossible task of parking within seven miles of the main entrance and then found our way through the maze of corridors to the Therapy Suite we were greeted by an enthusiastic volunteer who presented us with a pile of questionnaires designed to reveal my innermost concerns regarding my condition. No sooner had I started answering questions about my sleep patterns than we were whisked off to the cardiac clinic for an ECG.

The woman who performed the ECG was one of those people who wants to tell you all about someone they know who is in a wheelchair. In this case we were regaled with the tale of her nephew who had been run over by a drunken vet in Ireland, paralysed and then mugged by four Polish men in an alleyway in Dublin of his Christmas bonus. I think the subtext was that I'm lucky to only have Muscular Dystrophy.

A little later we squeezed in to a consulting room with Jo, the physiotherapist, Chris, a post-doctorate researcher studying MD, and Dr Rose himself. The purpose of the consultation was to review progress since the last one six months a go and to anticipate what was going to be required in the future. Everyone admired the super-duper wheelchair which they had been instrumental in getting funding authorised for and bemoaned the lack of progress regarding our housing situation. We discussed various problems I've been having with my hands and everyone looked at my toe. I was rather alarmed by their reaction to it. Words like 'tissue viability' were used. I was firmly told to get my GP to look at it.

Various technological ideas were mooted to help with my increasing difficulties with communication and I'm being referred to the appropriate specialists.

On our journey home I found myself in reflective mood. These sessions are of immense value but they force you to confront the reality of the situation. My condition is degenerative and, in reality, this means I am forever playing catch up with myself, compensating for physical abilities lost forever. I am not a particularly 'head-in-the-sand' type person but sometimes anticipating the future is difficult. Sometimes it makes me want to pick a fight with four Polish men in an alleyway. Mostly though it focuses my attention on what needs to be done so that my quality of life remains as spectacularly high as it is. I'm not exactly looking forward to some aspects of what is to come but, all things considered, I'd rather know and be prepared than be caught by surprise and left wallowing. You can't anticipate every change but some are inevitable and, as such, forewarned is forearmed. I'll drip feed you the details as and when they occur.

I'm mentally preparing myself for what I hope will be a very brief stay at the Royal Brompton Hospital next week while Dr Simonds and her team try to get a handle on my blood gases by fiddling with the BiPap overnight. My beloved is so distraught at the thought of my absence that she has arranged for a 'girls night in' with a whole coterie of friends to help her cope emotionally.

If I can get a Wi-Fi signal in my ward I'll blog you from there. Until then, thank you for reading.

Toeing The Line

2010-01-12T17:41:00Z

There is little to write about at the moment as I am effectively snowbound. The heavens have dumped a largish amount of the white stuff upon us and rendered the local pathways wheelchair proof. Dancing On Ice could be broadcast from the Westcroft Centre car park, across which I would have to traverse if I wanted to get to the school or village. The boys had two snow days off school last week and have since been watching the weather forecasts with the same attention they usually devote to Spongebob Squarepants.

Apart from a slightly infected big toe I am well. Polly keeps looking at the toe and muttering that it is the wrong colour and doesn't match the other nine. It doesn't hurt unless someone pokes it so I haven't been particularly worried. Even so, to stop her worrying (fussing) I had one of the district nurses look at it and she put a dressing on it that makes it look like I'm wearing a finger puppet on my foot.

To add to the surreal nature of my life, this morning I ate my breakfast to the accompaniment of Polly having a Ukulele lesson and strumming 'She'll Be Coming Round The Mountain' in the chord of C. Her tutor has gone away to learn how to play 'The Wheels On The Bus' so he can teach her next week.

That's it for now. Until next time.

A Week In The Life

2010-01-06T16:07:00Z

We are now a week into 2010 and this is my first post of the new decade. It has been an interesting week, here are some of the highlights.

On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.

New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.

On January 2^nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.

January 4^th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.

In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.

January 5^th – the boys go back to school.

January 6^th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.

So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.

Until next time.

That Was The Year That Was

2009-12-30T14:52:00Z

As we slide down the razor blade of life (as Tom Lehrer had it) into 2010 I am compelled by convention to look back on 2009 with consideration.

I had a run of deterioration in my Muscular Dystrophy which caused me some concern early in the year but a new super-duper wheelchair has gone some way towards compensating for that. I lost the ability to raise my arm in such a way as to be able to eat meals. A devise called a Neater arm has greatly helped with that problem. Frankly it was a bit scary at the time but I've got a new consultant at Kings who actually knows something about FSH MD and managed to reassure me that my condition was not spiralling out of control, just reaching a tipping point. The new wheelchair combined with a decent air mattress has meant I've been able to cut down on about 90% of the painkillers I was on. I've decided to postpone my demise for another year.

Sam has had his kidneys scanned and they have been deemed satisfactory. Matty is now wearing glasses, something he is perfectly happy with and he is now perfecting his geek-chic look. Polly has now qualified as a fully fledged junior Clown Doctor. She works once or twice a week at Great Ormond Street Hospital and the Royal Marsden. The work is sometimes traumatic but always deeply rewarding. For reasons I don't fully understand she has decided to learn how to play the ukulele. And since Matty is intending to learn the guitar I dread to think what our home will sound like next year.

A highlight of the year was when we received our new car, a Volkswagon Caddy. It is significantly longer than our old van which means we all have a bit more space. We only have this fabulous new vehicle because of the generosity of my brother and sister. Best of all, it arrived in time for our holiday in Wales.

Since I last blogged we have attended the deadly Christingle service where hundreds of children wave oranges with lit candles stuck in them around. This year both Matty and Sam took part in the Nativity play. Sam was a fearful shepherd. He was given the direction to look scared when the angel of the Lord appeared. While the other shepherds stood rooted to the spot Sam 'acted'. You would have thought that the angel Gabriel had appeared in the guise of Freddy Krueger. Matty meanwhile was cast as Joseph. He managed, with 9 year-old aplomb, to walk Mary to Bethlehem in a manner that showed loving, husbandly devotion but at the same time subtly conveyed the message that, in real life, he and the girl were not actually an 'item'.

Christmas day morning was spent at home in a frenzy of present opening and included a visit from Nanny, Pam, Polly's mum. In the afternoon we travelled to Dulwich and my brother Simon's new house. To get into the house I had to cross the gravel driveway in which I got stuck. The tread of my wheels became embedded with tiny stones which had to be individually removed before I dared move onto the newly fitted real wood flooring. We had a great time as my entire family gathered, including my sister Helena and her family all the way from Texas. Fortunately Simon and Jaspreet's house is huge so 6 boy cousins and 9 adults had plenty of space. In fact, had we wanted to, I think we could have played 5-a-side football in the living room.

So, as 2009 comes to an end I'd like to thank everybody who has kept me alive this year and to everyone who reads this blog. I appreciate your company and your comments. I hope you will stay with me for the new decade. I'm certainly intending to stay with you. Happy new year.

Until next time...

Blackout - Call 999

2009-12-23T12:13:00Z

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...

Padlocked

2009-12-14T17:39:00Z

So there I was, bossing the children around. “Clear the table, Matty, it's tea time.” “Sam, put that toy away.” Polly was attaching the Neater-Eater arm. The chilli was ready. Strictly Come X-Factor was on the telly. I went to move backwards so we could move the table ready for tea. My wheelchair wouldn't move. I tried again. Nothing.

It is a law of the universe that electric wheelchairs only break down at the weekend. Stephen Hawking, in his seminal work, A Brief History of Wheelchair Related Inconvenience postulates that the relative complexity of a wheelchair multiplied by the disabled persons dependency on the chair divided by the distance a service engineer will need to travel and factored by the time any office of any person able to facilitate a repair closes will mean that a wheelchair will breakdown after 5:30pm on a Friday and before 8:30am on a Monday. The Hawking equation therefore determined that my chair broke down at 7:00pm on a Saturday.

I pressed any number of combinations of buttons to no avail. The LCD screen on the controller had a picture of a padlock on it which summed up the situation very well. Eventually we called SERCO and explained how stuck I was. We declined the offer of an appointment on Tuesday (between the hours of 8:30am and 6:00pm) and reiterated that I was very stuck. My chair, when working is a marvel of technology – when not working it is a very very heavy armchair with a substantial human male in-situ. There are rockeries with more mobility.

The problem with engineers from SERCO who, on the whole are nice, competent people, is that they do not have specialist knowledge of every model of wheelchair. It is not realistic for them to know the ins and outs of every make and my chair is very high spec and therefore relatively uncommon. As a result Polly and I did not hold out much hope when we were told that the duty emergency engineer was on his way. Still, at least there would be an extra person around to help push.

Meanwhile we ate tea and watched Stacey be voted out of the X-Factor final. We also started ploughing through the vast amount of paperwork that came with the chair. I dimly remembered reading a manual that appertained to my particular controller. Several manuals had pictures of controllers that bore no relation to the one I have, with its smug picture of a padlock displayed on the screen, but eventually, in a folder filed under U for Unlikely to be needed, we found a booklet with some details that roughly corresponded to mine.

To unlock the padlock, which we were informed was a necessary security feature, we had to move the joystick in a particular sequence of movements. No one was more surprised than me when this worked and my chair was restored to full working order. We immediately phoned SERCO to cancel the engineer. Unfortunately he was already committed and wasn't going to return to the depot without a signature on his paperwork. He duly arrived and sucked air through his teeth whilst examining the controller in a manner meant to reassure us he had seen this model before. According to him, the padlock security feature is to enable the wheelchair user the ability to lock the chair whilst they pop into a pub or an inaccessible shop. This makes perfect sense. Anyone who needs a multi-thousand pound high specification wheelchair often wants to get out of it to wander around shops or to get some liquid refreshment. He also informed us that the padlock could be activated by nearby magnets or electrical devices like mobile phones. Perhaps you can begin to see why I don't have complete faith in the abilities of SERCO engineers.

To be fair, the engineer was very gracious about being called out on a wasted mission. We signed his paperwork and promised to keep the electric wheelchair away from anything electrical. I also assured him I'd use the padlock security feature whenever I got out of the chair to go shopping. Now, if only I can work out why the bloody thing activated in the first place.

Until next time...

The True Meaning Of Christmas

2009-12-10T19:59:00Z

As any parent knows, 'tis the season to watch your children dress up as angels or shepherds or, in my case, angry chefs. Yes, I've been to see Sam in the infant school nativity play this afternoon. The age old story was told this year using the conceit of Ned the donkey seeking out the true meaning of Christmas.

There is something wonderful about sitting in a crowded school hall, searching the assembled ranks of costumed children, who are in turn searching the audience, for that spark of mutual recognition. The surreptitious wave, Sam's grin and the look of possessive joy and slight relief that daddy is there to see him perform will be a memory that forms one of those great pleasures of parenthood. He is dressed in black and white, wearing a chef's hat, and is only partially obscured by the piano. As Ned searches for the true meaning of Christmas, Sam and his band of angry chefs prove that the festive season is not all about food, with my boy delivering his one solo line, “With flour in my hair!” loudly and clearly. It is up to other parents children to dismiss toys and even Santa as being the essential element of Christmas but my attention is focussed on my child as he sings and dances his way towards the nativity. Eventually we learn that Christmas is about a baby, born in a stable and, as demanded by tradition and grandparents in the audience, Away in a Manger is sung.

Last week I trundled over to the school to see Matty in the junior school performance of Panto-Pandemonium, a witty subversion of traditional pantomime stories. Matty was a member of the vast choir that supported the big kids of year 6 who got to do all the acting. Next year Matty will be one of the big kids of year 6 and he is already angling for a major role. He lives in genuine terror that the school will change its tradition and next year the acting will be shared out amongst the years and as a result there will be less starring roles for him to audition for. Matty is determined to be an actor and sees next years Christmas show as his potential big break.

We are now well into the festive season as far as the school is concerned. Tomorrow the boys have their Christmas dinner. I may be persona non grata after Sam told his class that daddy says sprouts are the devil's food. Next week they have their class parties. Matty has to take six satsumas. I'm sending Sam with a bag of sprouts.

Until next time.

Fair's Fair

2009-11-30T16:31:00Z

Last Saturday was the school Christmas fair and it was all hands to the deck. A school fair is the Burn (Polly's maiden name) family's natural habitat. Despite being swamped in clown doctoring and Polly Mixturing, Polly somehow managed to find herself agreeing to design, make and wear a Polly's Pockets crinoline hooped dress covered in pockets for children to pick presents from. Of course, it was a huge amount of work, involving a temperamental sewing machine, some hula-hoops and yards of material, and quite a few late late nights, but the final result was thoroughly satisfactory.

Meanwhile, Pam, Polly's mum had agreed to run and stock Nanny's Stall. She had been collecting toys, ornaments and bits and bobs for months, as well as knitting cardigans at a prodigious rate. It took two car trips to transport the accumulated stock to the school.

On the day Polly and Pam disappeared off to the school early leaving me to sort out the boys. It turned out that it is easier to corral custard than get two boys ready to go out. You say, “we're leaving in five minutes. Have you got your shoes on?” They hear, “we're leaving in five minutes. You have time to start a computer game, build something large out of Lego, and have a pillow fight whilst bouncing on the bed.” It is a miracle to me that Polly ever gets them to school of a morning. Eventually they announced they were ready to go. Sam appeared dressed in a t-shirt and a pair of shorts. I sent him back to find some jeans and a warm top. He was indignant but reluctantly went back to change. He reappeared wearing a cardigan that had last fitted him when he was three. I sent him back to change again. Sam, with a perfectly straight face, denied that he had any other clothes.

Many minutes later we were on our way, walking across the local leisure centre's car park, when Sam announced he had forgotten to bring his purse which contained all his spending money. Back we went.

By the time we arrived at the school the fair was well under way. Polly was surrounded by a horde of small children handing over their 50p coins and rummaging in her many pockets to find presents. Pam was doing a roaring trade on Nanny's Stall. Hundreds of people were milling around. I retreated to a corner and hid.

My wheelchair allowed me to rise up and survey the scene. Occasionally the crowds would part to allow Sam, wielding a puff of pink candy-floss like a sticky magic sword, to pass through. Matty would appear periodically to beg more money to invest in trying to win the fastest Mario Kart lap on the Wii stall.

We're not sure yet how much was raised for the school at this years fair, but if the efforts of my family are anything to go by, it should be a lot.

Until next time.

Me Versus The Blackberry Storm 2

2009-11-23T18:40:00Z

I am one of those fortunate people who knows instantly what to do when faced with a computer or technology based problem. I call my friend PJ and beg him to sort it out. However, occasionally I am the person called upon to impart wisdom on matters technological. I swear that I have never pretended knowledge of anything more complex, computer-wise, than an abacus but sometimes people mistake my intense concentration when I am writing for computer literacy. My mother, who has one son with a doctorate in computer science who runs a highly successful software company, still prefers to ask me to solve her internet connection problems. My advice usually goes as follows: “Turn everything off, mum. Wait five minutes and then turn everything back on again.”

Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.

Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.

The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.

Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.

The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.

I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.

Until next time.

When Polly Gets Flu

2009-11-17T15:41:00Z

Polly has had flu. Now whether this was the infamous Swine flu or your common or garden flu flu we are not sure. In fact no one is sure, not the NHS helpline, our doctor or indeed, the several other people who have suffered similarly.

Now I love Polly. She is wonderful in so many ways I do not have time to list them all. She (and by extrapolation the children) is absolutely the best thing ever to have happened to me. She is kind, clever, caring and funny. But she is rubbish at being sick. Firstly she believes she is completely indispensable to the running of the universe and that the whole of creation will fall apart if she takes any time off. If she is enforced to go to bed for a while she gets annoyed if the world manages to continue orbiting the sun without her personal assistance and guidance. If, however, the universe somehow manages to struggle on without her, she gets incredibly annoyed if it doesn't tidy the living room in exactly the way she would have done.

Polly has to feel really ill before she relinquishes control of the cosmos. On this occasion she was ill enough to go to bed during the day which is something she begrudges deeply because she 'should be doing other things'. 'Doing other things' means doing all the things that mummies do, children's entertainers do, clown doctors do and rulers of the universe do.

Polly being ill is nothing compared to Polly feeling a little bit better. Polly very reluctantly cancelled a gig at the Royal Marsden but only because flu, cancer, chemotherapy and sick children are a volatile combination. However, Polly feeling a little bit better essentially means Polly catching up with all the things she feels she hasn't done as well as continuing to do all the things she would normally be doing and perhaps a few other things in case anyone suspects her of idleness. Lesser mortals, such as myself, are left wallowing in her wake as she bakes cakes for cub fund-raisers, manages my sisters house restoration, entertains at 4 year-old boys parties, makes Christmas cards and oversees the middle-east peace process. Suddenly she will complain of being tired and look at me as if it is entirely my fault.

At night, my usually delightful bedtime companion becomes an irritable, tetchy, scratchy sleepless nightmare. I cannot move, breathe or mumble sweet nothings without bringing about the kind of reaction that is usually a precursor to all out war. Every creek, every variation in light, every child's nightmare, is my fault. Will no one let her sleep? Don't I realise that she is sick?

The problem for Polly, and no doubt mothers everywhere, is that just because she is ill does not mean that life stops to compensate and allow her time to catch up. I do my best to help make things run smoothly but honestly, is it too much to ask that we don't run out of proper coffee? I've had to drink instant. Yes, when Polly is sick we all suffer. Thank God it's only woman flu.

Until next time.