Fair's Fair

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.

When Polly Gets Flu

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.

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.

Still Blogging On

I'm sorry that I appeared to have disappeared from the blogosphere recently, I'm all right, honestly. A combination of annoying difficulties to do with actually typing words, sheer business and a run of good weather have conspired against my blogging duties. Thank you to those who enquired as to my virtual whereabouts During my hiatus various things have been happening.

Polly and I made the trek in to London for one of my regular appointments at the Royal Brompton Hospital. While I waited among the wheelchairs and breathing apparatus Polly went on to her Clown Doctor office in Islington to sort out her expenses form. I read my book and waited, nodding occasionally to nurses, doctors, phlebotomists and sundry support staff I have come to know over the years, and watching the assembled disabled folk wheezing and waiting. Steve, a technician, took blood from my earlobe and tested my blood gasses and eventually I was ushered in to the consultant's consulting room. Dr Simmonds checked me over and pronounced that my carbon dioxide levels are elevated and that they could, in theory, be exacerbating the somewhat unnervingly rapid deterioration in my muscular dystrophy. More time on the BiPap will be required and the various settings will need to be adjusted to compensate. On the plus side, it might help.

By way light relief, and it being half-term, we took the boys to the cinema to see A Night In The Museum 2. It being half-term and raining the cinema was packed full of screaming, overly excited children, all munching vast buckets of popcorn and other noisy comestibles. We had to wait until a later screening than we had intended and had to queue for what seemed like hours by a poster advertising a film called Drag Me To Hell. Enough said.

I've more to tell you but my patience with tapping out one letter at a time has worn thin.

Oh, by the way, we're off to the Mobility Roadshow near Cirencester on Thursday, so if you are intending to go, drop me a line or leave a comment and maybe we can rest our weary wheels and grab a coffee together.

Bye for now. I'll be back soon.

A Day In The Life

Polly has been off Clown Doctoring at a hospital in London somewhere. I'm not allowed to give you too many details but it involves her speaking in a west country accent and saying 'curly-wurly' a lot. Oh, and she wears a carrot on her shoulder. As she left this morning she called out to me, “Have a good day,” and then she vanished into the metropolis. I settled down for a 'good' day, by which I mean quiet, and booted up the computer to check emails and manage my football team on Facebook.

11.00am The doorbell shrills and shrieks and warbles at aircraft taking off volume to indicate someone has arrived at the front door and wants my attention. I may have mentioned before that our doorbell is VERY loud because I am disabled, and therefore, presumably deaf. (Visitors to the flat who are here when it rings often think it must be a fire alarm and start tying sheets together in the hope of making their escape.) I attempt to use our intercom system to let whoever it is in but this proves easier said than done. It is supposed to operate via an 'environmental control' system but doesn't any more, so I have to manually push buttons on a unit fitted to the wall. On bad days it can take several minutes for me to align myself in such away so as to be able to press first the 'talk' button and then the 'enter' button. Often, by the time I have, whoever it was who rang the bell has grown old and given up. Today is an okay day and I manage to let the visitor in after he has identified himself as an engineer. You can be sure that if he had said 'robber' I would have asked for further identification. The engineer turns out to be from the Royal Brompton Hospital and has come to fix the BiPap ventilator which has been beeeeeeeeeeping all night for no good reason. (Polly maintains that the alarm should only go off if I am seconds away from death, and only then if it has tried to resuscitate me by itself.) 20 minutes later the engineer gives up and replaces the machine.

11.40am The ear-splitting doorbell goes again. Once again I successfully negotiate the entry system and once again someone identifying themselves as an engineer comes in. This one, from a company whose name is made up entirely from initials, has come to fix the back door opener. He has come equipped with a young man whose job it seem is to hold things. It takes an hour of mild cursing and a lot of Allen keys before the automated door stops opening and shutting of its own accord. The young man passes things beautifully.

12.30pm Kalepo, one of my carers, arrives to help me with lunch and to go to the loo. Fortunately he knows how to let himself in so we are spared being deafened by the doorbell.

2.50pm Once more my ears are made to bleed. This time it is a specialist dermatological district nurse. My skin has been erupting in mini-pimples since a change in my medication. I thought I'd left acne back in my adolescence so I am grateful to see him. He has given me a prescription for a number of salves and lotions that should restore my skin to adulthood.

3.20pm The district nurses (or big stick nurses as Sam calls them) let themselves in and help me go to the loo again. They also wrestle with the coffee-maker, a technology they regard as suspiciously futuristic.

3.50pm Our friend Andi arrives back from the school with Matty and Sam. Within seconds they are arguing about whose turn it is to go on the Playstation 3. I do my daddy thing and make them share.

6.00pm Godfrey, another carer, arrives to help me give the boys their tea that has been in the slow cooker since Polly prepared it this morning.. He leaves 50 minutes later.

7.30pm Both boys fed, showered and ready for bed. Sam read The Avocado Baby, Matty surgically removed from computer. I am the daddy! Now, where's Polly?

7.50pm Polly returns, all curly-wurly'd out.

The Healing Power Of Homecare

One of the best things about writing a blog is that when strange or exasperating things happen to you you at least have the compensation of thinking that it will make for an interesting post. I've been thinking this a lot recently.

With Godfrey off ill and Kalapo in Nigeria I've been left with a team of stand in carers. I've mentioned Abby and Carlotta previously. They are sweet women with minimal English who bicker and panic their way through each evening and morning call. Carlotta, who is a devotee of some Japanese spiritual enlightenment movement has taken to holding her hand a few inches from my body and transmitting healing energy in to me. She assures me it doesn't matter if I believe or not which is probably a good thing because I'm pretty sure that any heat that I am supposed to be feeling is coming from the mug of coffee I'm drinking than from any form of science defying psychic energy. Abby is becoming more and more irritated to find her colleague standing over me apparently doing nothing. Carlotta hisses that Abby must not know what she is doing because she is not a believer.

Yesterday Carlotta went back to school so she will not be coming so frequently. She says she plans to visit family in Paris next weekend and promises to bring me back some French cheese. As I said, very sweet; it's just a shame she is is mad as a box of frogs. Carlota's replacement is Lola, a rather surly woman who seems to begrudge having to make evening calls, telling Polly she expects me to be ready to go to bed at 8:30. She can expect what she likes.

Meanwhile, Lola is being taught the ins and outs of my homecare by Abby who barely manages to remember her own role, let alone someone else's. As a result I spent several terrifying minutes dangling over the toilet yesterday while the two women randomly pressed buttons on the hoist remote control before calling for Polly to come and sort them out.

Oh, and just in case you think my days are any better, Polly is off learning to be a clown doctor again and the district nurses have been organised to come to help me go to the loo sometime between 2:00 and 2:30pm. It's now 3:15pm and there's no sign of them. If I knew for certain they would definitely turn up I'd be in half a mind to wet myself just to give them the extra work.

Thank you for reading.

P.S. They arrived at 3:25pm, very apologetic. Now I feel guilty.

A Pause

A brief respite from the American saga while I bring you up to date with events here at home. I'm sick again. Not very, thank God, but enough to be irritable and out of sorts. The culprit is Sam again. He has had a cough and has had to be off school all week. To complicate things, Polly has been doing another Clown Doctor training week. She has been coming home with a bizarre mix of tales of dying children and improvised comedy routines. But at least the district nurses turned up this week so I could go to the loo.

I'm taking a course of antibiotics in an attempt to head off a major chest infection. The pills are the size of small tombstones. How come they can shrink a camera, music player and games machine in to a microscopic mobile phone but can't gets a drop of medicine in to anything less than a stick of chalk?

I'll also take this opportunity to point you towards my old friend Paul 'Rock God' Loader's new blog How To Be A Bonafide Rock God. If you've ever wondered what it is like at the very bottom of the music business (think barrel, scrape etc.) this funny, honest and occasionally literate blog is worth a few minutes of your precious time. And if you are a parent of a would be X-Factor contender with dreams of super stardom, point them at this and show them how they'll probably end up. I mock Paul, because frankly I don't know how to do anything else, but this is a guy who actually gets paid to perform and has done so for some 30 years. That's a heck of a long time to gather stories of the reality of rock 'n' roll.

Wee'll Meet Again

You may feel this blog has strayed from the disability issues theme, what with parties, sick children and elephants of late. Well never fear, the disability factor is back. You may want to cross your legs for this.

Polly, as you know, has recently been accepted to train as a Clown Doctor. This involves a training schedule that would stretch your average neurosurgeon and which started this week. From Tuesday she has had to be in Islington or at Great Ormond Street Hospital for Sick Children by nine o'clock each morning so has had to leave by 7.00am and does not get back until 7.30pm. This has involved some pretty fancy childcare arrangements and a great reliance on family and friends to get the boys to school (particular thanks to Andi, Emma and Pam) and to cubs, swimming and what have you.

I feel I should say at this point that on more than one occasion Polly has been assured that if she wants to work full-time then she most definitely can. The whole social-care system will facilitate her to fulfil her destiny and will step in to help provide care for me should the need arise. Her needs are every bit as important as mine. Thus reassured Polly and I feel that a bit of Clown Doctoring is well within the realms of feasibility and a not unreasonable ambition. Polly wants to do it and I want her to do it, too.

Kalepo and Godfrey come and get me up and can hang around until about 10.30am, so the last time I can go to the loo is at about 10.00am. Polly therefore dutifully rang my care manager and told her the situation, giving her the dates and asking if it could be arranged for Kalepo and Godfrey to pop in mid-afternoon over the course of the 4 days to give me a hand. No. Since I've been transferred from social care to medical care it would be cheaper if the district nurses came instead. Okay. Two of them came around one afternoon and Polly and I explained the procedure. All well and good.

Tuesday came and my mother-in-law Pam came over to take the boys to school. As it turned out Sam had been sick again and was off for the day so she kindly stayed here to look after him. The hours passed and there was no sign of any district nurses. Pam had been supplying me with a steady flow of coffee and so by late afternoon I was beginning to really feel the need for the loo. Eventually, I had to ask Pam to help me. She graciously and with good humour pulled legs and passed bottles and generally helped me get sorted.

You may be wondering why I didn't phone the district nurses and simply ask where they were. This would tell me you have never had dealings with district nurses. They are akin to the gold at the and of a rainbow, forever just out of reach. You can't call them directly and so have to rely on messages and answer machines. Or, just as effectively, ESP and smoke signals.

That evening Polly rang, left messages, released carrier pigeons, and so on. Wednesday would be sorted. A good thing too as there would be no Pam around today.

You can probably guess what happened. Nothing. Without Pam around I had been able to severely restrict my fluid intake, but, even so, nine and a half hours is an awfully long time. To make matters worse I had to take the boys out to tea and take Sam to his swimming lesson. Splish splash. I made it, but if there are awards for iron will and endurance I deserve one. I was relieved in so many ways when Polly finally came home.

That evening there was an extensive, frank and comprehensive phone exchange between Polly and someone at the district nurses administration. Finally, everything was sorted.

Which brings us to today. At 1.00pm two nurses arrive. I hardly need to point out that 1.00pm is not mid-afternoon. Still, only six and a half hours 'till Polly gets home. Fingers (and legs) crossed.

Is There A Clown Doctor In The House?

A few months a go we were watching one of those regional programmes that are usually about cleaning up the local canal or restoring an old theatre or such like. This one was about a group of people who go in to hospitals to visit children and help them come to terms with their conditions, or help explain the procedures they will be going through. They are known as Clown Doctors and use humour, magic and sometimes just plain silliness to to help relax and comfort the children. It turned out these Clown Doctors weren't just a bunch of annoying would be children's entertainers in wigs and red noses but were trained in all manner of things from psychology and infection control to close-up magic and balloon modelling. Personally the idea of someone coming up to my sick bed and asking me to 'pick a card, any card' would make me reach for the pain relief, but I'm not four years old and facing months of chemo.

I turned to remark to Polly something facile about rather having morphine than laughter as my preferred best medicine when I noticed a smile on her face and a far away look in her eyes. “I could do that,” she said. And truth be told I knew she could.

A few weeks later, after an exchange of phone calls and emails, an application form arrived. I say application form but I mean a demand for an autobiography combined with a dissertation on the philosophy of child care. I swear it would be easier for an ex-junkie, militant communist to join MI5 than for a experienced children's entertainer and nursery nurse to become a clown doctor. I know I'm biased but with more than 15 years experience as a story-teller, professional qualifications and real life experience as a nursery nurse both here and abroad, and years of earning a living as a jobbing actor (playing countless parts as cute woodland animals and fairytale creatures) there is no one in the whole country more qualified than Polly for a job like this. She spent hours and hours filling in the form and then dropped in the post.

As you might imagine, following the TV programme, the Clown Doctor people had been swamped with requests for application forms from would be balloon modellers and wig wearing circus wanna-bees. In the end some 375 people actually made it through the form filling and of those a handful were invited to a workshop. Polly was among them. After a morning of finding her inner clown and evolving from the primeval swamp into a dinosaur she was called back for an interview which is where we were up to today.

This morning Polly made her way back to Angel Islington for the interview. There were only six trainee places vacant so I did the “You've done really well to get this far” speech. Later, I received a phone call from her telling me how she had gone mad and been unable to stop talking. “I was surreal even by my standards,” she groaned, “At one stage I was telling them about ready rolled pastry already cut in to circles.” “Why?” I asked. “I don't know,” she wailed. “But after it was over one of the panel asked me where she could get some. Is that a good sign?”

Apparently it was. This afternoon they rang to give her the job though whether for her acting and entertainment skills than for her particular knowledge of frozen patisserie we'll probably never know. Next month she starts a process of training that will last two years. That's an awful lot balloon animals.