Not Thinking About It – By Olly Double
Once you get used to dealing with type 1 diabetes, you almost stop noticing it. It kind of hangs around in the background of your life, lurking quietly and not drawing attention to itself. Of course, you still have to do things to keep it quiet, but the blood glucose tests, the infusion set changes, the bolusing of insulin, the counting of carbohydrate and all that become just stuff you do without thinking about it too much. The problem is, however quietly it lurks when life’s straightforward, as soon as you move outside your normal pattern you’ll start to remember just what a pain in the backside it is.
Last month, for example, my Mum died. Anybody who has lost a parent will understand the kind of elemental grief that such a loss brings with it, but bereavement also brings with it lots of practical problems – and they’re the very kind of thing that make you start noticing diabetes again.
Mum’s funeral took place in Lincoln and we went up there for a few days, staying in the kind of establishment that has recently become known – for no apparent reason – as a ‘boutique hotel’. We managed to get us two nice double rooms, one for Jacqui and me, and one for Joe and Tom. Normally, we try to get two rooms next to each other in case we have to test the boys’ blood sugars in the night, but on this occasion we could only get rooms on separate floors. We did wonder whether this was wise, but eventually decided that it would probably be OK. Joe and Tom are well into their teens by now, and putting them in a room on the floor above us seemed like a good way of making them feel a bit more independent.
In spite of the intense sadness of the occasion, there were also pleasant aspects to the trip – not least spending a few days looking around a beautiful historical city and wallowing in my memories of growing up there with Mum and the rest of my family. But all of this was seriously outside our normal pattern, so of course diabetes strode out of the shadows where it had been quietly lurking and started making a right nuisance of itself.
Just as Jacqui had anticipated, the funeral itself led to some seriously wonky blood sugar levels. In theory, stress is supposed to make you go high, but it’s always tended to have the opposite effect on Tom, and sure enough he had a nasty hypo in the church. Then, having been treated for that – and scoffing loads of cake at the wake – his blood sugars then went zooming through the roof.
The real chaos-bringer, though, was having to eat out every night we were there. I know that’s not exactly the kind of moan to bring much sympathy – ‘Oh darling, isn’t it simply a frightful bore to constantly eat in restaurants and never having to cook for oneself?’ – but the rich, fatty foods we were eating didn’t half play havoc with the boys’ glucose levels. It didn’t matter what kind of cuisine we plumped for. Indian, Italian, or trendy European fusion menus all meant a parade of delicious dishes ready to do battle with their digestive systems. However carefully we tried to carb count, they both ended up with stratospheric blood sugars after every meal. Sometimes, the boluses they gave themselves to bring them back down ended up making them crash back into hypos. This was annoying enough during the day, but at night time it was a right palaver.
With hotel rooms on separate floors, checking their blood sugars was a bigger challenge than usual. Normally, you just set the alarm for 2am or whenever, and when it goes off you wake up, swear, turn off the alarm, try and avoid the almost irresistible temptation to just roll over and go back to sleep, painfully haul yourself out of bed, stumble through to the next hotel room all bleary-eyed, realise you’ve forgotten the key card for their room, swear, go back and get the key card, realise you’ve locked yourself out of your own room, swear, knock on the door until your partner lets you back in, go back to their room, flounder around in the dark trying to work out where everything is, stub your toe on something, swear, eventually find the light switch, test their blood sugars, realise they’re both out of the normal range, swear, treat them, stumble back to your own room, and try to get back to sleep, quietly swearing to yourself until you manage it. Simple.
On this occasion, they had agreed to wake themselves in the night, test themselves and call us on Jacqui’s mobile to let us know what their blood sugars were doing. Just in case they didn’t manage to wake up and do that, Jacqui set her alarm so she could phone them on their mobiles to remind them. This actually meant that Jacqui’s alarm went off at 2am or whenever, she woke up, swore, turned it off, tried to avoid the almost irresistible urge to go back to sleep, tried to call Joe on his mobile, he failed to answer, she swore, she tried to phone Tom on his mobile, he too failed to answer, she swore, she woke me up to tell me that neither of them was answering his phone, I swore, I suggested trying Joe again, she called Joe again, he woke up, swore, and answered the phone, Jacqui reminded him about testing blood sugars, Joe woke Tom up, Tom swore, both of them tested their blood sugars, both found out they were out of the normal range, both swore, treated themselves, called Jacqui to tell her what they were on, she swore, told me what they were on, I swore, then we all turned over and tried to get back to sleep, quietly swearing to ourselves until we managed it. Much, much more complicated.
By the third night, we decided to knock this whole rigmarole on its head, and I went back to plan A – which was exactly like the first account above, but with the added delight of having to stumble up a flight of stairs thrown into the bargain. Getting home to simple, home-cooked, carb-countable meals was a huge relief, as you can imagine.
A week or so after we got home, we were sitting down for a meal and going through the automatic process of checking blood glucose, counting the carbs and bolusing insulin, when a thought struck Tom. ‘Do you know, I’ve only just realised that most people don’t have to think about it when they eat things,’ he said. He’s had diabetes for as long as he can remember, so he rarely notices how it lurks around in the background of his life. What had struck him with astonishing clarity is how much he has to think about ordinary, everyday things, every day of his life. This was remarkable because there was nothing out of the ordinary here to remind him that diabetes is a pain in the backside. Normally he doesn’t think about how much he has to think about things.
All of this reminds us is that insulin is not a cure for diabetes, but merely a treatment. A cure would mean he could eat without thinking about it.