True holidays – by Ben Rolfe
Ben is the father of Alice who has Type 1 diabetes. Here, Ben and Alice talk about the ups and downs of holidays when routine goes out the window. And if there’s any such thing as a true holiday if you’re always on diabetes duty.
Ben’s point of view
“Daddy my control is terrible. Why am I always high?”
I looked back over Alice’s recent numbers and she was not wrong. She had struggled to keep her blood sugar below 10 for a few days now.
“Have you tried shifting the time on the pump again?”
The summer holidays had proven this year to have similar issues as last year. During term time she would be up at 6.45, breakfasted and out the house by 7.40am, and eating healthy meals around 7 or 8pm every night, with a last check at 10.30pm. Of course the pump was set up for this rhythm, so in the holidays we had discovered that merely shifting the time on the pump a couple of hours suited her holiday rhythm a lot better – breakfast at 9am, dinner at 8pm, followed by ice cream or similar.
“Yes, I’ve already tried that. My control is rubbish. I’m going to go blind.” She went on. The potential negative long term effects of Type One diabetes are very much at the forefront of Alice’s mind, particularly when she believes that her control is not as good as it should be.
“Darling it could be anything – hormones, maybe you did less exercise than normal. You’ve just got to do your best. Adjust the pump doseage…”
“I ALREADY DID THAT!” she cut me off.
“Well you’ve got to do it again sweet pea. Just keep adjusting in micro doses until you get it right. Maybe you’ve grown this summer.”
“I hate it. I’m not going to do it any more. I just want to be normal like Emily and Izzy.”
It can often be hard to keep one’s temper as a parent of a 14 year old T1 Diabetic. Clearly there are other things going on affecting her mood (as her 16 year old non diabetic sister had proven a couple of years previously), but I know that being high puts her in a foul mood as well. The headache for one, and the worry for another. Over the last 2.5 years we know that it’s important for Alice to be able to come to us to talk about her diabetes, and ask us what to do, so losing one’s temper is out of the question.
“Your control is great though darling, you’re doing everything as you should, you’ve just got to keep doing it.” I shouted after her as she stomped off.
Alice’s control is terrific – she does, in the main, everything herself, checks obsessively and tries to fathom what combination of foods works best for her control, for example the fact that if she eats pizza late at night her levels will be high for 8-12 hours afterwards. In fact, her Diabetes Dr sent her to see the psychologist for a periodic checkup, and he took one look at her overall levels and said “Why have you come to see me?”
The holidays can be an issue, however, for the reasons I mentioned before. Timing, choice of food, and so on all go out the window. And a holiday is never a true holiday because Alice always has to manage her diabetes. That is why, for her, the Diabetes UK Summer Camps are a real holiday. Even the volunteers running the camp are in the main T1 Diabetic. To be immersed in that is for her a true holiday.
Alice’s point of view
I would love to have a holiday without diabetes, especially in the summer. Summer, for me, is about swimming and seeing friends for lunch – both of which diabetes changes how you do those things. Especially if you’re the only diabetic there. But on a Diabetes UK care event, you’re not the only one. You’re just like everyone else. We all check our blood sugars before eating and exercise, we all count carbs together, and the best part is that it feels normal. It’s also nice to know that you’re not alone, that people are going through the same things you are going through, and that you can enjoy the activities. I certainly enjoyed all the activities, we did abseiling, canoeing, fencing, rafting, Jacob’s ladder, zip wiring and we even went to Alton Towers (we even got fast passes!).
It really did feel like a true holiday.