I always liken it to steering a boat – by Ben Rolfe

ben-and-alice-150x150Ben is the father of Alice who has Type 1 diabetes. Here, Ben and Alice share their views on diabetes complications..

Ben

Alice is 14, with all the associated problems that incurs – moodiness, fatigue, rebellion, door slamming, experimental clothing, growth spurts, hormones, and so on. Some of these manifest themselves with a barrage of Whatsapp messages, my iPhone struggling to keep up with the chimes, all sort of melding into one long noise.

“My HbA1c is too high, it should be in the 6’s.”
“I’m going to go blind.”
“I’m going to lose a foot.”
“I have to see the dietician because I’m too fat.”
“I have to see the psychologist because I am too stressed.”
“I have to see a hypnotherapist to try and deal with my stress.”

No matter how hard we try to make Alice understand that the HbA1c is not some sort of quarterly exam with a pass or fail attached to it, it always feels like it. And a “fail” is incredibly hard. Of course it is going to fluctuate because of Alice’s age – she is growing, so we have to experiment with insulin doseage on the pump – increasing it sometimes hourly. Her hormones will also interfere with the efficacy of the insulin. And of course the fact that she has sport at school one day but not another, or maybe she has to run for a bus, or she has a slice of cake with her mates after school.

And of course Alice is all too aware of the potential complications of Type 1 Diabetes. Which can be a double edged sword. As if it is not enough to deal with the pretty regular hypos (low blood sugar which can be debilitating and leave her shaking and starving) or hypers (high blood sugar which give her a dry mouth, fatigue and a headache), she also has to deal with potential longer term complications. Knowledge is power is the old adage, but it can also be thoroughly depressing, particularly when exiting from the quarterly visit with the Endo (Endocrinologist) with an HbA1c slightly elevated from the previous visit.

Whilst the HbA1c gives the Endo a great indicator as to how well her blood sugar is being managed, it is a daily battle to try and maintain the correct insulin dosage; I always liken it to steering a boat – tiny corrections one way or the other, and whilst it might appear to be a zig zag trajectory you will always arrive at the same place, and as she gets older, Alice will find the corrections become smaller both ways, and her HbA1c should become more stable.

Endo visit

The quarterly visit is always fraught with worry for all concerned. Whilst I tend not to go as I am chiselling away at the metaphorical coal face at work, my wife gives me a running commentary on Whatsapp on how Alice is getting on. Yesterday was no exception, from the usual “discussion” with the receptionist about booking the next quarterly appointment before this one, and wanting her to queue again after the Dr’s appointment, to the fact that the Dr was running over an hour late. Then of course I wait impatiently to find out about the all important HbA1c level (the HbA1c is an average of the blood sugar levels over a period of weeks or months, the higher the number, the greater the risk of complications). Inevitably, they told me, the white coated bespectacled tester comes out with a piece of paper, and looking at it (but hiding it from Alice) he asks what her previous result was, and then compares the current result with the previous result with some words such as “Well done” or just a look of disapproval and a sharp intake of breath if it has gone up, obviously trying to be funny and friendly but in reality turning the whole exercise into some sort of exam result.

Eventually my iPhone chimed with another Whatsapp. “7.4”

That was it. No explanation, no nothing. I nod to myself, brow furrowed, and think actually that’s pretty good.

Alice

As a perfectionist, I’ll always want my HbA1c to be better, even if it comes to be 6.5%. I’ve always stressed about everything, but diabetes has made me more stressed. Every time a dreaded three digit red number appears on the screen of my finger prick checker, that’s it. I immediately jump to the worst conclusion, which makes my blood sugar even higher. I worry my control will be like this all the time, and I’ll have to be amputated or go blind. People tell me all the time that I’m probably high because I’m “growing up”, but I don’t want to be high, even if I have an excuse.

I think people with responsibilities that they have to manage constantly 24/7 like diabetes, stress more and pay more attention to things. Sometimes it can be a good thing to pay more attention to simple things but I tend to skip to the worst thing that can happen and there is no need. I know that if I’m high once nothing will happen, but I can’t help thinking about the worst that could happen.

Read more of Ben and Alice’s blogs.

Information on Diabetes UK website.
Find out more about diabetes complications and minimising them.
Go to our teenage section for young people with diabetes.

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