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As many of you may know, I am a Type 1 diabetic. What you may not know is exactly what that is.
T1D, as it’s known, often occurs early in life and requires constant measuring of blood glucose and many injections of insulin every day.
Without the insulin we’d be dead within a number of days. I was diagnosed with this auto-immune disease at the age of 17 and I have always fiercely faced it head on.
I have determinedly not allowed it to get in my way. I was advised to delay going to university for a year – no chance said I, and thank heavens for it. I wouldn’t be where I am now if I hadn’t done what I did at that specific time.
I’ve always felt empowered because I embraced what I had. I certainly didn’t ‘suffer’ from T1D, but it was a part of me, something I had to get along with, not fight.
I have known many people over the years who have tried to fight it – and it’s a losing battle, there is no way you can win.
I had very strong words with the major charity Diabetes UK when they changed their slogan to ‘Know Diabetes. Fight Diabetes’.
I argued with their CEO that it sent the completely wrong message to the young people and their families who thought they had a choice – that if they worked hard enough, they could ‘defeat’ T1D.
That’s something that, at the moment is medically impossible. The message of positivity is sometimes a hard one to sell.
We have to known what the glucose levels in our body are at any given time. We need to administer insulin to keep our bodies functioning all the time – called a Basal rate of insulin. Then there is food…… that requires us to know how much Carbohydrate is in everything we eat and drink – every last mouthful – and give enough insulin to exactly balance that out, so that our glucose levels don’t go too high, or too low. This is called a Bolus insulin dose.
If you a harbouring the misapprehension that that can’t be that difficult, bear in mind that we need to try to keep our levels between 4 and 7 (mmol/L).
A standard, small chocolate bar, with no insulin, would increase glucose levels by 11, to 15-18 mmol/L, a dangerously high level.
The insulin we use to control glucose is incredibly potent and has to be used extremely carefully. A can of Coke contains 330 ml of liquid. I use on average about 0.5 ml of insulin a day – divided into 480 separate tiny injections.
Now that IS a lot of injections – but I am very lucky to use an insulin pump, so that once I am all hooked up, the pump delivers those 480 squirts of insulin by itself, 1 every 3 minutes.
The technology is astounding. Companies like Abbott Diabetes Care, Insulet and Roche Diagnostics do amazing work in this field, much of it in the UK, providing jobs and growing expertise here and exporting worldwide.
But here is where my confession comes in. As much as I love the technology, as much as being T1D has given me a focus on health, has forced me to take a positive outlook.
As much as my specialists’ marvel at how well controlled I am and, to be honest, heap praise on me when I’m being checked out, 31 years in and I AM TIRED.
It is a constant drain. Always checking, always monitoring, always calculating. Sometimes it does just get you down.
Sometimes I would just love a pizza without worrying that I’m going to feel ill for 24 hours after, I’d love to indulge over Christmas without the same concerns.
Or I’d like to go for a walk, or a swim without worrying that my glucose levels will crash through the floor making me feel like I’m about to peg out.
I have mentored lots of young people over the years, tried to dispel their concerns over what their futures hold, and I’ve done with the very best of intentions, but for the first time ever, I get a sense of their despair.
So how do I combat this unusual feeling of being fed up? It’s pretty new for me and I hope it doesn’t last, because if I live as long as I want to, then I will have to live with all these complications too.
Perhaps this is just a tiny glitch in my otherwise very positive outlook as a T1D, perhaps I need someone as encouraging as I try to be to other diabetics, to chivvy me along.
Maybe just writing this is enough, so that people know that even when I am bright and breezy in the office or the supermarket or the swimming pool, I have 101 things going through my mind, trying to work out how to both BE well and FEEL well.
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