Hear Hear!

Over recent years I have noticed something peculiar about people. They all mumble. They miss out bits of words. Children are the worst, what with their squeaky high-pitched incomprehensible rambling. Women are almost as bad. People in groups produce a wall of unintelligible and impenetrable sound. The whole world needs elocution lessons. Or... Just possibly it might be my hearing. To rule out this absurd possibility I recently attended the Audiology clinic at my local hospital. It turns out that 50% of us with Facioscapulohumeral muscular dystrophy have high frequency hearing loss. Guess which 50% I fall into. The charming audiologist placed headphones over my ears and played various sounds into each of my ears while I pressed a button if I heard anything. Often I heard burps and rumbles and I dutifully pressed away. Sometimes the machine wasn't working and I heard nothing. Eventually the audiologist used her computer to generate a graph to represent my bat-like hearing. "This line," she said, indicating a straight red line crossing the chart, "would represent perfect hearing. This blue line is you." For about two thirds of the way across the chart the blue line wobbled at fractionally below the ideal red line. Not too shabby. Unfortunately, at the final third - the third representing the higher frequencies - the line plummeted down the graph like an unsuccessful attempt at hang-gliding off Beachy Head. To remedy the situation the audiologist produced two shiny little hearing-aids and plugged them into her computer. "There," she said. "I've programmed them to compensate for the high frequencies you've lost." With that she inserted the plastic tube bit into my ear and turned them on. "You'll need to practice wearing them. It takes a while for the brain to process frequencies it hasn't heard for a while." This did indeed turn out to be the case. For the next few days my brain ascribed the same significance to all high-frequency sounds. The squeak of my tyres on the floor was accorded the same auditory status as peoples voices. The sound of a distant lawn mower the same as the television. Worst of all, our budgerigar, Cato, twittered and tweeted at the apparent same volume of a commercial airliner taking off. Eventually though my brain began to work out which sounds had significance and which could be safely relegated to background noise and a kind of sonic harmony was achieved. A few weeks later I had an appointment with the audiology consultant who was positively thrilled to discover there was a link between FSHD and high-frequency hearing loss. "Well, I've learned something new today," she said, delighted. She also suggested that the hearing-aids should have their programming tweaked now that my brain had adjusted to them so as to maximise their effectiveness. This was duly done but the result means that for the last couple of days the budgie has sounded like he's been given a megaphone. One brilliant thing though was that we had taken Sam, now 10, with us. On our way to the clinic we passed the League of Friends' cafeteria. "The League of Friends," mused Sam. "Does that mean it's run by superheroes?" "Yes," replied Polly. "All of them cunningly disguised as elderly ladies wearing tabards." Thank you for reading. If you choose to comment please write quietly and annunciate clearly. Thank you.

Return Of The Blogger

I'm back.

Thank you for your patience. It's been a long, and for the most part pleasant, summer and I feel I owe an explanation for my absence from the blogosphere for it's entirety. Way too much has happened for me to cover in one post but I'll give a brief summary here and expand on details as time and my typing allow.

I left you back in June because the long decline in my dexterity finally reached a kind of tipping point and my typing became so unreliable, erratic and difficult to perform that anything otter than essential email communication became all but impossible. I have not yet found a satisfactory remedy for this but I have purchased an iPad which, with it's superior touchscreen keyboard, helps a little. It then took more time to find a suitable, but hugely expensive, stylus with which to poke at it with because my fingers are no longer up to the job. I missed blogging but the longer I left it the more things kept happening and less I felt able to catch up. Consider this post a kind of bull being taken my the horns sort of thing. I'm getting back in the saddle and mixing metaphors once more.

You may remember that long ago we started the long process of being rehoused which resulted in a slightly surreal meeting with, and letter from our MP, Tom Brake. (See Cometh The Man back in March.) Well the wheels ground awful slow but we were at last notified of a new development being built that includes wheelchair accessible accommodation complete with through lifts to move users up and down between floors. We were told, unofficially, that we were 'pencilled in' for one of these desirable properties. For weeks and then months we drove past the development and watched the walls going up and the roof being tiled. At least one extra bedroom was on offer as well as an extra bathroom and more space generally. All ideal. A few weeks ago an Occupational Therapist arrived to discuss our specific needs; hoists, bathroom adaptations and the like. He took notes, measured the wheelchair and then disappeared back to OT Land. Days passed. Then we received a phone call from him to say that lift that was being installed was too small to take my wheelchair. The lift shaft had been built into the fabric of the house and it was too late to change it. We wouldn't be moving after all.

We contacted Tom Brake again and stiff letters are being written but in the current climate of cuts it seems unlikely that new housing will get built in the foreseeable future. It seems a pity that no one thought to wonder what kind of wheelchairs might or might not fit in the house before they built them. I suppose they didn't want to waste precious space.

I will call it a day for now. Next time I'll tell you how I went yellow in August and ended up in hospital. Thanks for reading.

Until next time. (Soon, I hope.)

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.

Watch The Birdie

Once again Polly and I dragged ourselves over the speed-bump strewn roads of South London for me to attend the Lind clinic at the Royal Brompton Hospital. Once there, and having located one of the rare and obscenely expensive parking spaces, Polly vanished to have coffee with a clown doctor friend who lives conveniently nearby, pointing out that she hadn't taken a day off from working in a hospital to spend it sitting in another hospital, especially as she wasn't being paid. I sat reading and patiently went through the whole blood-letting experience so my blood gases could be analysed. Sometime later I was seen by a stereotypically efficient German doctor who informed me that my CO2 levels had fallen satisfactorily and that they won't need to see me again for a whole year. Polly reappeared and we stop-started our way back through the London rush hour just in time to take Sam to his first ever Beavers meeting.

I am, of course, delighted that all that faffing about in March when I had to stay at the RBH has paid off and that the changes of masks and BiPap settings have achieved what they set out to do, namely make me feel better. It is a slightly unsettling experience to be in a position where at least one aspect of my condition is improving rather than spiralling ever downwards. It is my ambition to confound all those health professionals who anticipate the worse. Viva Stephen!

On a completely different subject altogether, Polly, as you may remember if you have been paying attention, has spent months renovating my sisters house in Surrey while my sister runs what's left of the global oil industry. The house is still looking for a tenant and has a couple of agencies squabbling over who should manage the property. Last week we got a phone call from one of them to say that a bird had flown down the chimney and expired in the living room. “It's made a bit of a mess, “ they said. Sighing, Polly made her way to the house armed with some cleaning equipment to discover just how much mess a trapped magpie can make. It turns out that it makes a lot. She phoned me to say that the house looked like a scene from CSI Surrey. “What should I do with the. . . er. . . body?” she asked. I suggested she put it in a plastic bag. It was only on the way home that Polly realised the irony. She'd interred the magpie in a Sainbury's Bag for Life.

Until next time.

Sick And Tired

If you are unfamiliar with the term Norovirus you are exceedingly fortunate. I mention this because I am now on more than nodding terms with the little packets of DNA and RNA wrapped in protein. The last few days have not been particularly pleasant. I admit that I am self-diagnosing here, and I may be infected with a distant cousin of Noro but since my carers inform me that another of their clients has had the virus I think I'm justified at pointing the finger at the micro-parcel of misery.

Sickness and wheelchairs are not an ideal combination in anyone's book. I'm fortunate that I've had only a relatively mild case but it has still been distinctly grim. I'm over the worse but still feel a little delicate.

Today I had a visit from a Speech and Communications specialist called Nina who came to assess me. You will be surprised to hear that I do, in fact, have the ability to communicate but Nina plans to help me do it better. She is looking into technology that might help speed up my typing and also a system that could help me communicate in noisy environments. We will be meeting again next week. I will, of course, let you know how it goes.

Until next time.

Cometh The Man

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.

Still Bumped

In case you were wondering, I'm not in the Royal Bromton Hospital. I was bumped again, presumably by a very sick person whose need was deemed greater than mine. Because this week is half-term and the boys are off school I declined the offer to wait in all week on the off-chance that a bed would become available. Apparently we are going to try again in the first week of March, by which time I will be considered a priority.

Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.

Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.

My hand is hurting so I'll have to stop writing now. Until next time...

Padlocked

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...

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.

In A Glass Box

Last night Polly, the light of my life, had been invited to perform a couple of pieces at a local arts centre as part of an evening of monologues called A Moment To Mutter. Being a thoroughly supportive husband, and appreciative of the high quality of cake served at this establishment, I agreed to accompany my beloved to the show. And since we hadn't organised a babysitter we gave the boys a late pass and took them with us. We even remembered, at the last minute, to cancel the carers.

The Lantern Arts Centre is located within part of the building that is the monolithic Raynes Park Methodist Church in south London. Over the years it has evolved from an enthusiastically amateur underfunded enterprise into a slickly professional underfunded enterprise. On Friday nights they put on, or invite artists to perform, shows in their Café Studio, a smallish theatre on the 3rd floor. After much fund-raising and lobbying for grants, a few years ago they installed a lift (elevator) which finally made the centre fully accessible to all. The management at the Lantern Arts Centre are committed to inclusivity as is testified to by the huge range of shows and services they put on and provide in and around the local community.

I have ridden the lift to the Café Studio many times in the past, both as a performer and as a member of the audience, I don't have a particular fear of lifts, and this one is essentially a glass box with minimal claustrophobic potential, but even so, my heart rate goes up a little as the surprisingly fragile seeming glass door closes behind me and an electric motor starts to whine. We had sent the boys haring up the flights of stairs that created the stairwell through which the lift rose and Polly and I had entered the lift and closed the glass door behind us. Polly pushed down on the large UP button and held it down and the electric motor engaged. The tone of the electric motor was not that of a contented piece of machinery going about it's business of perpendicularly raising passengers forty or more feet into the air in a safe, reliable manner, but was rather that of a straining put-upon cantankerous piece of groaning mechanical misery. Some eighteen inches into our alarmingly juddery assent Polly removed her hand from the aforementioned UP button and we came to a halt.

People peered over banisters at the new exhibits and I wondered if they were expecting some kind of show. Then it came to me, I could be a mime trapped in a glass box! Polly pushed hopefully at the UP and DOWN buttons but to no avail. Matty and Sam looked down from on high and asked if we were stuck. We assured them it was only for a minute and their angelic little faces turned from mild anxiety to one of sensing an opportunity of freedom, so they headed for the cakes to bat their eyelashes at whoever had the misfortune to be in charge.

Meanwhile the inestimable Georgie Talbot and her husband John, joint artistic directors of the arts centre, leapt into action. John opened a panel high above us and he and colleagues turned some ratchety thing that very slowly lowered us back down to the ground floor.

Various people fiddled with the lift mechanism, trying to reset the wretched thing, but to no avail. Much to Georgie's consternation nothing worked and defeat was admitted. Her fury was heightened by the fact that the centre spends a fortune maintaining the thing and that it had been inspected only days previously. The show, however, had to go on. Fortunately, at that moment, my friend Bob arrived, and within seconds had come up with an action plan. He and I would retire to a local tavern for the duration.

By now the audience was arriving so Bob and I hung around to chat with those we knew, many of whom nodded sagely at the lift and regaled me with stories of the times it had broken down with them in it. Bob, who hates lifts and only ever goes in one with me when we go to the cinema because I can't reach buttons (and even then sort of clings spread to the wall with apparent nonchalance in case the floor drops away) swore he'd never set foot in the thing.

It was also a chance to catch up briefly with Susie, who among her many responsibilities at LAC was tonight manning the box office. Susie, a talented writer, who co-ordinates the centre's children's and youth Theatre Clubs, endures the agonizing condition Lupus, and we have worked together occasionally over the last decade or so, with Susie in particular refusing to compromise because of disability. She had written and was performing two monologues and so, eventually, left Bob and me in charge of the box office while she went to prepare. I later learned that Matty thought her 'growing up' monologue was wonderful.

Once Bob and I had escaped box office duty we made off around the corner for a drink and chat. It occurred to me Polly might want to escape during the interval and get the boys home and to bed so we didn't stay long. As it turned out her second piece was still to come so Bob nipped upstairs to video her performance for me.

Not exactly the evening I was anticipating, but not bad.

Until next time...

Dancing And Dimensions

On Sunday it was Polly's birthday. For some reason she decided to spend it at an Israeli dance afternoon, held in the church hall. As it turned out, the session was led by a group of messianic Jews called the New Jerusalem Dancers, and although there were quite a lot of dances there was also an awful lot of exposition of “the bible says this and so it must be true” kind. Leviticus seemed to feature prominently. The dances were fun and there were lots of opportunities for audience participation and even a buffet of typical Israeli food. I do feel I now know everything I will ever need to know about the festival of Simchat Torah though.

At one point a demonstration of the blowing of a Shofar (a rams horn) brought about my favourite comment of the afternoon. “Bring me the anti-bacterial wipes!“ Such is a time of the times.

Oh, and in case you are wondering, the boys and I gave Polly perfume (Flower by Kenzo), some books, including a replacement copy of Delia's Complete Cooking Course, a pair of boots (not wellies), and a set of allen keys.

This morning we had a visit from a number of people from the housing department who came to look at our flat with a view to extending it. It took them less than thirty seconds to conclude that unless we open a portal to another dimension our home is as big as it will ever be. They've all gone away now to see if they can think of anything else.

Interestingly, on the corner of our street a new housing development is to be built. To mollify the local planning department the developers promised to build a disabled accessible house on the site. Perfect! But then, you will be astonished to hear, they had to make some changes to the plans and the house morphed into a small flat once the contract was signed and sealed. Almost like magic.

And finally, Matty was regaling Polly at breakfast with details of a dream he had had about slipping into another dimension and having to live dressed as a teddy bear. Sam, not to be out done, announced that he too had dreamed. He had been stung by a bumble bee and slipped into another Dalmatian.

Until next time. . .

Polly Ate The Table Leg

As this blog cruises past entry number 200 (at How To Be An Inspiration anyway) I have news. My new rinky-dink, super-duper wheelchair is back and working. What's more, they have removed the inhibitor that stopped me going fast when the chair is tilted back. This means I can whiz a long at speed and in comfort, which is exactly what I did last night when I careened down to the village to buy some chips for supper. There was a small sensation in the chip shop when I raised the chair up and up to the high counter and handed over the money.

Having my chair back is a relief in many ways. Almost instantly several areas of pain that I'm so used to are gone with such suddenness I am caught by surprise. Simply being able to adjust my position in a near infinite number of ways keeps me both comfortable and entertained.

Of course, life being life, and my life in particular, not everything goes completely smoothly. For example, Polly ate the table leg. (I'm so tempted to leave that sentence hanging.)

The new wheelchair, what with all its multi-function bits and bobs, is a little higher than the old one. This is not a problem, except that it wouldn't fit under our dining table. This meant that the already difficult task of having a meal was further complicated by me not being able to get close enough to the table to eat. The solution? Raise the table. You can buy 'table-risers' from various disability inclined outlets but we were uncertain exactly how high the table needed to go so decided to experiment using household objects. Eventually we discovered the ideal height the table needed to go up was that of a 220g tin of Heinz baked beans. Fortunately we had a 4 pack of these little tins and the table problem was sorted.

Until, that is, the wheelchair was taken away for repair and we had to lower the table once more because now it was too high.

The new wheelchair, now repaired and restored to us, means we needed to re-raise the table. “Fetch the baked beans,” I cried. 3 tins of beans were produced. “Er. . . Where's tin number four?" Polly looked me straight in the eye, daring me to complain. “I ate them for my supper last night when I got in from work. I hadn't eaten since 7:30 that morning and it was gone 9: 00 at night and I was too tired to knock up a non-baked bean orientated meal. Any problem with that?” None whatsoever. You soon learn not to argue with a tired, hungry clown. The table, even on 3 legs, is more stable.

Until next time.

Poorly Puppy

As you can tell from the fact that I'm updating this blog, I'm still alive. I'm being very sensible, eating a little, drinking fluids, taking my medicine, having nebulisers and not attending arena based spectacles in the south-east of London. No sir, I'm a good boy.

I am, however, sick of being sick. I can't even lie back in my new whiz-bang wheelchair without drowning in self-produced fluids. Worse still, in many ways, I know I should be grateful that this is still a relatively minor illness by my standard, and I should be happy that I've not been carted off to hospital to be ventilated through a tracheotomy. Still, it's only September, and a long winter looms. Oh enough, Stephen.

Disconcertingly, my GP reads this blog, so, given my stupidity on Sunday, it was with some trepidation that I had Polly ring him to confess that the nasty green stuff in my lungs was, indeed, still nasty and still green, despite 5 days on Co-amoviclav and a course of Prednisolone. So, now, Dr T, having noted that according to Twitter, I was feeling a bit better, has forgone a switch to Ciprofloxacin but has upped the dose of Prednisolone. (He did phone to check I was actually improving – he doesn't just diagnose and prescribe based on Twitter tweets, he's a professional after all.) He's also ordered a sputum test. (I tell you all this because I know Jacq, Ronnie, and any other GPs reading this are itching to know.)

Polly went to the Chemist in the village to collect the prescription. It was not, she told me, our regular pharmacist, but another pretty young woman, who, having done the necessary identity checks, remarked, as she handed over the bag of drugs, that she had looked at my file on the pharmacy computer.

“Poor Mr Deal, ah, bless him,“ she said chirpily. “He has been a poorly puppy.” Sweet.

Polly says that in 16 years of marriage she's never thought of me as a puppy. Many other creatures however. . .

Until next time. Bye.

How To Be Sick And Stupid

Thursday evening: start to feel a bit rough.

Thursday night: Very hot, coughing.

Friday morning: ill. Nasty green stuff evident in lung. Phone the good doctor Toosy, who must have groaned inwardly. He decides not to mess around and prescribes anti-nasty green stuff-biotics and steroids. Take Paracetamol. Use Salbutamol nebulisers. Very anxious about something.

Late Friday morning: new wheelchair arrives with accompanying engineer and physiotherapist. . Too exhausted to be excited. Will write about chair soon.

Friday afternoon and evening: miserable.

Friday night: coughing, hot, sweaty, anxious.

Saturday: sleep until 3pm. Spend rest of day bravely rallying. Eat a little risotto. Go to bed. Have taken decision. Sleep.

Sunday morning: if you are a doctor, especially my doctor, stop reading now. Went to O2 arena in Greenwich to see Ben Hur – Live. It's our anniversary this week and Polly had booked it a while ago. I sooooo wanted to see it. Fabulously spectacular, will write about it soon. Drove home over every bloody speed bump in South London.

Sunday evening: pay for earlier stupidity. The whole going to bed thing a ghastly, messy, embarrassing disaster. Apologise to carers.

Monday morning: exhausting get up. Still getting used to new wheelchair. Drugs, nebulisers and cough-assist machine. Decide to update blog.

More soon, assuming I live. Bye.

Faster Than A Speeding Snail

Yesterday I had a fitting for my new wheelchair. Yes, it's the kind of wheelchair that needs fitting. Mind you, it also the kind of wheelchair that requires an engineer and a physiotherapist to explain how it works. It has so many configurations I began to think piloting a Harrier Jump-Jet would be simpler. The controller has more modes and computing power than Deep Thought.

The chair is amazing. Thanks to a grant from the Joseph Patrick Trust I have been able to have a seat-riser fitted which allows me to rise up to my standing height. The seat tilts as my current seat does, but in addition the back-rest moves independently. Each of the foot-plates can be adjusted at the press of a button. As I played with the controller I found that I could configure the seat so that for the first time in years I actually felt comfortable. The expression of relief on my face made Polly feel quite emotional. Little details like calf supports and silicon gel covered armrests add to the degree of comfort. Even the head-rest is infinitely adjustable.

Of course, this being me, not everything was perfect. The chair is significantly higher than the present one which means we need to raise our dining table using blocks. And because the motorized foot-plates are more complicated to take off the carers are going to find transfers more difficult. The chair is a little longer as well which means taking certain corners around the flat will be more challenging. I'm sure these things will lead to a deal of frustration and no doubt those frustrations will be reported on these pages but at the moment I am almost beside myself with excitement.

The wheelchair has gone away for fine tuning and adjustments, not least to reprogram the controller so that the chair goes at more than the 0.5 miles an hour it would only go yesterday. This was particularly embarrassing when I wanted to nip out to the car and check that the chair would fit in it. It took nearly 15 minutes to get round the corner while the engineer frantically phoned the office for instructions on how to access the power menu. I am assured it was only a programming glitch and can be easily fixed. I hope so or all I will be taking delivery of next week will be a very comfy armchair, albeit one that moves faster than a speeding snail.

I will keep you informed.

Unbalanced

Okay, where were we? Back from holiday, that's right. Back from holiday and straight in to a carer crisis. One of my long term carers suddenly started arriving late or not arriving at all. There were, of course, all sorts of reasons, some understandable and some not so. The result, anyway, was that I spent several days stuck in bed for an extra hour or so, or hanging around in the evening, ever shorter of breath, waiting for replacement carers to arrive. The situation has settled down somewhat but I'm still not sure who is going to turn up morning and night.

Further complicating the situation has been my BiPap mask problem. As mentioned last time, I appear to be leaking in deep sleep. The air pushed in to my lungs by the BiPap machine is under pressure and the mask I use is a nasal one. In other words, a mask fits to my nostrils and blasts air up them and in to the lungs, fully inflating them, and thus facilitating O2 and CO2 exchange. The system only works effectively because of the pressure. However, when I am in deep sleep, the muscles in my face relax and the pressurised air short cuts the lungs and escapes via my mouth. The BiPap machine has interpreted this as a leak in the system, it's little computerized brain assuming someone has stuck a pin in the tube or unplugged something in an attempt to assassinate me in my sleep. Although I don't actually die (you'll notice), the effect is, over the long term, a build up of CO2 and resulting headaches and mental sluggishness.

To solve this problem I have been sent, from the Royal Brompton Hospital, various alternative face masks. The first one covered both my nose and mouth, which obviously solved the mouth leaking problem, but was terribly hot and uncomfortable and turned any saliva in to dry, crispy flakes. It also leaked tiny amounts of air around the sides causing occasional high-pitched squeaking sounds. Horrible. The next mask was a full-faced one, covering eyes, nose and mouth. It looked suitable for deep-sea diving. I am not a naturally panicky person but the moment I put this mask on I felt unbearably claustrophobic. My eyes watered and my nose itched and I couldn't touch them because of this plastic casing. I managed nearly two minutes before freaking out and trying, unsuccessfully, to rip the thing from my face. Fortunately Polly came to my semi-hysterical rescue while the carers flapped ineffectually.

So, at the moment, I'm using my old mask with an alternative, non-alarming BiPap machine. Unfortunately this machine is less affective (due to its limited pressure settings) and although I am not being woken by an alarm I am, presumably, still leaking air in deep sleep. This is a situation that can't go on too long. If I start writing complete gibberish (as opposed to the normal nonsense), you can assume my gas levels are unbalanced and I'm being poisoned.

Until next time. . .

Wales 09 or Don't Hold Your Breath

When going on holiday what is the last thing you want to forget? Sun cream? Swimming costume? Wheelchair battery charger? Ah yes, another Deal holiday gets under way with its customary smoothness.

Fortunately the Paul Sartori Foundation who had the misfortune to be responsible for my homecare while we were in Wales are a superb group of people and managed to wangle a suitable charger from the very nice man who had undertaken to mend the electric bed and overhaul the hoist. Sophie at Paul Sartori must have wondered what terrible thing she had done in a previous life to have merited such severe punishment as having to organise the seemingly endless and complex list of requests phoned and emailed to her from London. The result, however, was a model of homecare provision with a succession of nurses arriving to sort me out morning and evening with good humour and skill. Their team was supplemented by 'No Problem' Greg who drove vast distances morning and night every single day to form the lynch-pin of my holiday care, and met every task asked of him with a cheerful “not a problem”.

The holiday passed with a mix of Welsh sunshine and showers but left us plenty of opportunities to enjoy the lovely local beach. The Pembrokeshire countryside is wonderful and we got to explore some places we had never been before. The boys particularly enjoyed the freedom afforded by a very safe environment and would disappear to play, armed with wooden swords, for hours on end with Alex from next door and other holidaying children. Ten days was not long enough so next year, Paul Sartori Foundation willing, we may try for longer.

A highlight of the holiday was our day spent at the Pembrokeshire County Show. This vast three day event takes over a local air-field and despite my wife's disparaging attitude of “why am I going to look at tractors?” turned out to be great fun. There were horse jumping competitions, dog agility trials and a truly breathtaking motorcycle display team who shot up ramps with such gravity defying acrobatic death-wish like grace both Polly and I wondered if their mothers knew what their sons did for a living. As one young man leapt some fifty feet in the air and casually let go of his bike, we both turned to our open-mouthed boys and said simultaneously “No!“ There were lots of rides and bouncy things for the boys to go on, including an army operated climbing wall which both of them gleefully scrambled up. As Sam abseiled down he banged his head on the tower and a whole platoon of battle hardened soldiers went “Ouch!“ (Sam was fine, his main concern was making sure we had all seen he had climbed as high as Matty.)

Of course, it wouldn't be a proper Deal holiday if all had gone smoothly. About a week into our stay the alarm on my BiPap ventilator began to go off with increasing regularity each night. Now the display on the BiPap is something akin to the tactical array on the USS Enterprise and it tells you such useful things as pressure, duration of breath, number of breaths per minute and whether your Phaser is set to stun. You can also turn off the alarm – for two minutes, after which, unless the problem is sorted, the piercing alarm goes off again. . and again. The display told us that there was a leak in the system but if there was we couldn't find it. The alarm began to go off at about 11 o'clock every so often, but by about 3 o'clock it was going off continually. Polly would get up to disarm it time and again but it always went off as soon as she crawled sleep deprived back to bed. It got so bad that Paul Sartori arranged for a night-nurse to stay over for the last night because they were concerned about Polly being safe to drive back to London. The nurse spent the night frantically stabbing at the alarm off button while I was dragged in and out of sleep. I was seriously thinking of taking the wretched machine down to the beach and throwing into a rock-pool. We rang the Brompton hospital but getting an engineer into the wilderness of west Wales is no easy matter especially when mobile phone reception is as variable and unreliable as a Libyan terrorists conviction. In the end we decided to leave it until we got home.

We stopped in Bristol to see my mum on the way home and didn't get back to Carshalton until gone 9 o'clock. That night Polly slept with the BiPap virtually tucked under her arm. Throughout the night the alarm went off time and again. The next day an emergency engineer drove a hundred miles to come and fix it. After prodding and poking it he checked the record detailing the machines history. “There must be some mistake,“ he told Polly. “It says here the alarm went off 582 times last night. That can't be right.“ Polly just laughed hysterically. Further prodding and poking revealed there was nothing wrong with the bloody thing. Which means the problem is not with the machine but with me. Sigh.

As far as I can gather in my sleep befuddled state the problem occurs when I am in deep sleep. Apparently my facial muscles must be relaxing and allowing the pressurised air to escape through my mouth. The BiPap thinks there is a leak and alerts us to the fact. The engineer has given us a different machine that does not have an alarm but unfortunately it is not as powerful as the old one so is only a temporary solution.

I sense that a trip to the Royal Brompton Hospital is on the cards.

Of Wales And Wonders

Well, we've had the new car for a week now and it remains unscratched and undented. Polly has discovered Sport on the gear stick and now uses it whenever there is a bend in the road or a hill, or indeed, a tree by the side of the road. She is still getting use to the football pitch length of the vehicle and we have had to massively cut back a bush to get it into our parking space.

We are off to Wales on Monday for two weeks so if you don't hear from me it is because I am in the land of my fathers and wireless broadband access is rarer than hens teeth. If I can post I will but the odds are against it. Talking of Wales, I would like to take this opportunity to thank the people at the Paul Sartori Foundation who have bent over backwards to make arrangements to organise care and equipment for our holiday. It must seem to them that accommodating the Deal's for a fortnight is more hassle than sorting out care needs in the rest of Pembrokeshire. I assure them we do appreciate the hard work.

Today a man from Possum came to fit a bracket to my wheelchair that can hold the Possum environmental control unit I have had for a while. This little grey box of electronic wizardry can operate all kinds of equipment, including the TV, the lamp, the back gate opener, and the front door intercom and opener. Up until now it has sat frustratingly just out of reach of me and the children have used it as one of the world's most expensive light-switches. Now it is attached to my chair. The only problem being, what with the already attached Neater Arm, my wheelchair is now the length of a pantecnicon. I have the turning circle of a bendy-bus and the chair is beginning to look more than a little Heath-Robinson. I am not safe to be out when there is even the merest hint of an electrical storm.

Right, I'm off to push random buttons on my gadgets to see if I can launch a nuclear strike.

Bits And Pieces

This, as the title suggests, is post of little bits of news, updates and observations. As I write I find myself in a slightly peculiar situation. Polly has gone to Buckingham Palace with her mother for the day and I am left here with the children. The Buckingham Palace visit was arranged as a birthday present for Pam and involves a tour of the state rooms and various exhibitions, but not, as both Pam and Polly secretly wish for, a chance to poke around Her Majesty's and Prince Phillip's private quarters. I am, however, not left alone with boys. Polly decided to make use of some of the help offered to us by various agencies at a meeting held a while back. As a result I am writing this with a woman sat silently in the corner of my living room. She is poised to do my bidding but I don't have anything to bid her to do. The boys are behaving in an exemplary manner, happily engaged in various games and I am finding it vaguely disconcerting having a stranger sat watching our every move. I'm sure she is very nice. I just don't know what to do with her. I'm busy writing this so I can pretend to be busy and not have to talk to her.

We have had the boys for nine and five years respectively and have managed not to break them. Then, in the course of one week, we discover that Sam has had urinary reflux and could, theoretically, have damaged his kidneys and that Matty needs glasses. Sam has always been prone to urinary tract infections but it is only after this weeks ultra-sound scan that we discovered how potentially serious it could be. Fortunately the kidneys don't appear to have suffered any damage, being of normal size and shape, but further tests may be needed to check for scarring. We have noticed Matty squinting a little recently and so Polly took him to the optician. He returned home sporting a rather smart pair of glasses which he now will be wearing most of time. Matty is not particularly upset by this because glasses are quite trendy at the moment at school and he reckons he suits the geek-chic look.

Meanwhile, we are breathless with excitement as the new car is due to arrive on Thursday. I can hardly wait. Polly, however, has had her patience tested to the limit getting the new car insured. Despite every other TV ad being for car insurance, getting an adapted vehicle insured can be tricky. You need to approach a specialist broker, of which there are a few but nowhere near the number available to non-adapted vehicle owners. We have had the old Renault Kangoo van insured at a reasonable rate with a company and were happy to transfer the cover to the new Volkswagon Caddy. Only the Volkswagon Caddy is not a van but a car. You might suppose we intend to drive our new car to Basra via Helmand province carrying crystal chandeliers and open bottles of Nitroglycerin by the amount of time it took Polly to complete the transaction. She was on the phone for over an hour and a half. Normally we like to insure our vehicles for anyone over 25 to drive. Now you have to be over 30 and have the proven ability to yodel whilst reversing.

Right, I'm off to see if my lurking stranger can teach the kids country dancing or something.

Until next time.

You Swine

The school holidays are under way. Traditionally in our household one or other or both of our children instantly become sick a few seconds after the final bell rings and spend the first week of the holidays dosed up on Calpol and Ibuprofen. It is as if their little bodies struggle through the final weeks of sports days, class assemblies and dressing up days - this year a circus theme. Matty and Sam went as strong-man and elephant trainer respectively – and then, when the excitement is over, they wilt and cough and sneeze and descend into puddles of sweat and puking misery. This year however both boys seem fit and healthy, if a little tired and scratchy.

Obviously this is good news, doubly so because of the lurking threat of Swine flu. It is a relief to know that H1N1 (the post code for Walls, incidentally) is typically a mild variant of the influenza virus, and only a danger to those with underlying health issues. Of course, being someone with the odd underlying health issue I have to refrain from poking the television with a stick every time some smug government spokesperson assures the country that Britain leads the world in pandemic readiness. I'm glad we do lead the world but when we are told “So-and-so died of complications arising from Swine flu BUT they had underlying health issues,” I am not, unlike the vast majority, greatly reassured.

I refuse to cower in self-imposed isolation but I would appreciate it if you are feeling under the weather that you stay (say 15 metres) away from me. At least until the much vaunted Swine flu vaccine is available. Meanwhile, I'll be clutching my batch of Tamiflu close to my chest