Monday, 29 November 2010

Public humiliation on TV and live in person?

We're just back from our summer holidays. No, it hasn't been a long break, we have been busy at home this summer. We have had a few November days in Birmingham - we don't care for hot beach holidays anyway. Travelling by train and renting an apartment in the city centre, we enjoyed relaxing evenings in, looking after little Frank. The website promised lots of Sky entertainment, but the reality was that TV choice was rather limited, so we watched "I'm a celebrity, get me out of here".

I'm such a pompous snob that I have never bothered to watch this show before, but my common-as-muck friends love it. Plus everybody's heard about it through all the unavoidable news headlines. And I've got to admit I'm hooked, and am watching it now. It's quite troubling to see people voluntarily submit themselves to public humiliation, and I'm not comfortable with the way insects and reptiles are mistreated so that we can be served up with squeamish entertainment. But Ant and Dec provide some quality links. And I want Stacey to win!

Talking about public humiliation I have offered myself up for some. I am appearing as my creation "Fred Slattern - Colchester's Slum Poet" with extracts from Fred's latest collection "Fanfare for the Common Van".

It will be at "The Poetry Slam" at Colchester Arts Centre on 2 December. As audience reaction helps decide the winner, I'm hoping Fred's people will turn out for him. Or will it be the current day equivalent of bear-baiting, with the audience wanting to rip me to shreds? Give me no sympathy; I am, after all, a voluntary patient.

Tuesday, 9 November 2010

A calculated look at "dead in bed syndrome".

Ask the parent of a diabetic child about what is their greatest fear, they may well spout the charmingly named "dead in bed syndrome", which is exactly what it says on the tin. There was a death from this in the USA recently, triggering lots from the D-community to display remembrance candles. Of course, I have the utmost sympathy for the family of this child, but I found some of the D-community's response, (dare I say it?) a little mawkish.

Lots of D-parents, and let's be frank, it's mainly D-moms rather than dads, that blog or use facebook, were describing how they live in fear of DIB syndrome, how they watch their kids overnight, and are unable to sleep themselves. Maybe I'm a (part of the way along the autistic spectrum) cold fish, but I like to play the odds game, when assessing any situation, and determining my reaction on how to handle it. Maybe what I say will give some people some reassurance, others may just consider me analytical and heartless.

Looking at (and taking what they say at face value - maybe a big assumption?) it says that for every 10,000 patient years, between 2 and 6 people die from DIB syndrome. Taking the average figure of 4 deaths, that is of course 4 too many. But it means that one dies for every 2,500 patient years. (That could be expressed as "out of a sample of 2,500 people with diabetes, one of them will die from this syndrome per year".) Very unlikely for any single individual, but nevertheless distinctly possible.

So how does this compare with our risk from lots of other diseases and dangers? In the UK about 2,500 of us a year, get up in the morning, bright eyed and bushy tailed, and don't ever return home, as we get killed in car crashes. What about meningitis? Here today, but maybe gone the day after tomorrow. Heart failure and instant death from undetected problems may be out there stalking us. And there's hundreds of other diseases to fear, where maybe we have a day, a week, a month, or a year to live?

How do any of us (not just D-people) sleep at night knowing our loved ones could be taken from us at any time? The answer of course is that most of us just get on with life, and don't think too much about that aspect. But with chronic conditions like diabetes we are constantly reminded of our mortality by the nature of the condition, and the complex management that it needs.

So let us look at the risk that our beloved will die this evening from DIB syndrome. Starting from that 1 in 2,500 chance of it happening in a year, the odds for tonight are 1 in 912,000. A risk I could do without, but is it one we should habitually lose sleep over? I'm so tired I think I'll sleep tight, even though it's my turn tonight and I'll be up for the nightime duties with our little boy.

I hope Frank's picture above isn't too scary, and that this blog has given at least some of my readers some solace over something we would rather not have to think about. Best wishes to us all. And deepest sympathies to anyone who loses someone tonight.

Wednesday, 3 November 2010

The Cure is a tempting mistress, but we're not waiting around for you.

When running a marathon, or backpacking, you don't set off with a sprint. You find a pace you can sustain for the length of the event. And when the event lasts sixteen years, a calm steady approach looks best to me. With Frank's diabetes, we're now over two years in, with fourteen to go until it's his responsibility at the age of eighteen. Frank's condition has taught us much about diabetes, and much more about ourselves and our wider community.

Our National Health Service has come up trumps as far as we are concerned, and the Benefits system means that we can tick over without having to sell-up to fund the time we need to put in, to look after Frank especially during his younger years. So thanks to the UK taxpayers for helping us - and I'm one of them too!

So how do we deal with the condition, and how do we feel about a cure? I've covered managing diabetes in other blogs, so I won't go over the old ground of finger prick testing, multiple daily injections, observations every ten minutes during the day, and procedures during the night. We just have to get on with it all, we have no choice.

And "The Cure"? Well we're not holding our breath or counting down the days. Even before we had personal involvement with diabetes, we knew that a cure was many years away, so when we had the diagnosis, this lack of a fix on the horizon didn't come as a surprise to us.

We can't wait for a cure, in two senses. A cure would alter Frank's and our family's life, enabling us to jetison all the mental, physical and emotional effort in managing the disease, and avoiding all the personal discomfort for the boy with the fingertips of steel and the pin-cushion bottom. And we can't wait for a cure, as we've got to live our lives in the here and now; not some fantasy dream life at some unspecified time in the future.

The day-to-day management of Type 1 Diabetes takes all our capacity, and we don't think very much about The Cure. Sure, we support the efforts of the JDRF (Juvenile Diabetes Research Fund, an international organisation), and Diabetes UK who give lots of support. But we can't put our lives on hold until a miracle cure eventually turns up.

Frank's just an ordinary little kid, in almost every way. Apart from the time he's having medical attention, he's just charging about as four-year olds should. The picture shows him zooming off into the distance, on his scooter bike on the Wivenhoe Trail with his cousin.

We have benefited massively from the diabetes community. Thanks to the internet we have access to all the information we could ever want. But, even better, we have made contact with scores of people in similar positions, sharing experiences, looking at how best we can look after ourselves, and live a regular life. We have played our small part by forming Colchester Circle D, to support local families with Type 1 Diabetes.

There are super blogs out there (including "click of the light", "muffin moon", "instructions not included", "shoot up, or put up"), with lots of practical information, emotion and humour. I love these blogs, some written by people who have had diabetes many years. The way they pace their lives, and their approach to "bad days" are an inspiration. (For the information of non diabetics - even the most careful experienced diabetics have bad days - the condition certainly does not obey the rules that we follow when we do our best to manage the beast.) And little is said about a cure. They're all busy just getting on with their lives.

The Cure is a tempting mistress, and some type 1 diabetics are in hot pursuit. They expend lots of their energy pushing for extra funding, and posting on the internet to raise awareness of diabetes. Maybe it's our make-up, but we simply don't have the stomach for such a fight. Our energies are so focussed on getting by, that we simply don't have the capacity to be angry about the condition, or to lobby for its place in the public's and the authorities' perception of the ranking of Type 1 diabetes, compared with dozens of other rubbishy diseases.

It's Diabetes Awareness Month, and this blog is part of my contribution to this. So, if you were expecting me to beg you to donate to JDRF, or to rail on about our terrible lives, I'm sorry to disappoint. Actually, we enjoy a very good life and we're doing our best to get the most out of every day, inspired by our own brave little hero who just lives for the moment. The Cure may be a tempting mistress, but I don't think she's coming our way any time soon. But it would be nice, and hand over your money.....


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