Sunday, 2 May 2010

Hellhound on our trail

We've a Hellhound on our trail, and its name is Diabetes. It's a foul nasty beast that gets extra pleasure from popping up and biting at the rare moments when we're daring to relax. Just when we think we are doing well, our very own Cerberus visits from Hades and brings a nasty morsel for us. It jumps into our faces, and bites our arses.

Frank's been diagnosed Type 1 diabetic, for nearly 600 days. It's not just the 1800 finger-prick blood tests, or the 1200 insulin injections since then. (And the sums will be much larger for the next 600 days.)

It's not just the side issues of excessive thirst, and the consequent bedwetting, sometimes needing three sets of a linen per night.

It's not just the health implications of his conditions - will he lose his sight by the time he's 15, will he have kidney damage by the time he's an adult, will his circulation deteriorate so that he becomes gangrenous by the time he's 30, will he suffer the pain of neuropathy, will he have a stroke or heart disease at a young age, will he develop related conditions like coeliac's? And who will look after him if we're not around (yes, we're all getting older..)?

It's really not the diet, coming up with suitable meals for diabetics is no problem for foodies like us. Calculating carbohydrates and insulin doses is a doddle.

What's so difficult is the incessant nature of it all. It's not just an every morning pills cocktail, it's not about remembering to take a set dose before each meal, in the way one would for some diseases. With diabetes, it's about watching all the time, looking for signs. We take into account what has been eaten, how much insulin has been given (and what type - he takes two), how far out of "normal" range he is, and the balance between carbs, protein, fats recently consumed. Then it get spiced up with thinking about exercise he's had in the last few hours, what's happening now, and what's coming up next. Then we can only guess if he's having a growth spurt or fighting a bug he's recently been exposed to. Constant observation, and fine tuning with insulin shots or snacks or pushing him to exercise.

"I gotta keep movin', I've gotta keep movin', blues falling down like hail" And that's our life with Frank, keeping moving, checking him every ten minutes, running through the mental calculations to assess where his blood sugars might be, avoiding the hail that could blast him off balance, into hyper- or hypo-glycaemia, with more damage to the body, and the possibility of coma, brain damage and death. "And the days keeps on worrying me, hellhound on my trail"

Frank's parents are run ragged by it all. But Frank looks well on it all; he appears and behaves like a normal healthy little boy. Knowing we are doing our best with a very imperfect and rickety assessment, is the greatest possible reward. It keeps us going in the face of the Hellhound that will never leave us alone.

("Hellhound on my trail" recorded by Robert Johnson, Dallas, 1937)


  1. by the sounds of it, you're working damn hard to make sure he doesn't suffer any kind of complication. keeping his levels stables is pretty much the key - has he thought about an insulin pump? they're supposed to be amazing.

  2. Hi Shiv, great to hear from you. We expect he will have a pump in due course. He's four soon, but I reckon he will need to be older before he could accept a catheter and pump permanently strapped on. We reckon it's the way to go, and it's what our specialists are recommending for later. We'll follow your progress!

  3. Heart wrenching stuff Swifty. I have no idea how you guys cope. Puts my wee troubles into perspective.

    Keep on fighting....

    kind regards....Al.

  4. Comments from the Facebook link to this story -

    Louise Denyer: Have you ever thought about writing a book to help other parents of children with T1D?

    William Bramhill: I'll help you publish it -

    Julie Budd: I'll help you write it!

    Sarah Hearn: It's nice to read that I'm not the only parent to think the same thoughts. You might like to come along to our sept meeting, it is going to be all about family matters and children orientated, and hopefully children will be there too. Jordan is going to write a little about how she feels being diabetic and how it affects her, her brother Harry is writing a bit about the affect on him having a diabetic sibling. They should both be there too.

    JO COLDWELL: Powerful writing.

  5. Clare Urwin: Your blog is always so well written. Can’t imagine what’s it’s like having to be so aware of the diabetes all the time. It must be exhausting. Take care.

  6. I think you are doing a fantastic job at reducing the risks of complications. and if you were my parents I would be very proud. I love reading your blog and just wanted to say your doing great =)



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