Alarmed – By Olly Double
There’s a tinny rumble, and the Harry Potter theme obnoxiously blares out from the smartphone lying by my side of the bed. It’s 2am, and believe it or not, I have deliberately set the alarm to go off at this time.
Joe has a virus, and his blood sugars have been running unpleasantly high since Friday night. Given that, there was no doubt that he needed us to check his levels in the night, to make sure he didn’t go off the scale. On Friday night at about three o’clock, he woke up feeling rotten and Jacqui valiantly got up to test his glucose and help bring him down from the high teens. She eventually managed to get back to sleep after that, but he felt so poorly that he stayed awake the rest of the night. So there was no doubt before we went to sleep last night that it was my turn to do the duties. So I set the alarm on my phone, and turned the light off.
‘It should be OK,’ I thought to myself as I drifted off. ‘It’s Sunday tomorrow, and after all I used to do this all the time.’
For years, Jacqui and I would take turns waking in the night to check Joe’s and Tom’s blood sugar levels, just to make sure they were OK. I know this is a divisive issue among parents, because I blogged about it while we were still doing it, and it stirred up a bit of a heated debate. Some people felt that to test blood glucose in the night was a symptom of being an overanxious parent, whereas others felt it was a necessary evil if you wanted your offspring to avoid the dangers of going out of range for long periods while everybody is asleep.
Our view was pragmatic. We tested at night because it was not uncommon for us to find Joe or Tom with a blood glucose level that was too high or low for comfort. The reasoning was, if we, say, found Tom is on 2.1 mmol/L at half past one in the morning, what would have happened to him if we hadn’t woken to test him and treated his hypo? Going on at that level for another five or six hours could have been a bit, well, dangerous, couldn’t it?
Regular testing at night was really draining. We tried alternating it so that Jacqui would do it one night and I’d do it the next. We tried doing it so that Jacqui would do a stint of four nights, and I’d do a stint of three. Either way round, regularly interrupting our sleep left us feeling permanently knackered. Eventually – for all kinds of reasons – we got to the point where enough was enough. Joe’s and Tom’s blood sugar levels seem to have become a bit steadier through the night, and they now have continuous glucose monitors which will communicate with their insulin pumps. Even better than that, they have the type of pump which will shut off the supply of basal insulin if the CGM thinks they’re going hypo.
So a year or so ago, we stopped testing at night as a matter of course, and decided only to do it if circumstances demanded. Unfortunately, Joe’s virus is just such a circumstance, hence my smartphone waking me up at this ungodly hour.
I’m a light sleeper, so I wake up instantly and cancel the alarm. I haul myself out of bed as quickly as I can manage in order to avoid the risk of just rolling over and going back to sleep. I’m so tired that I almost feel drunk as I stagger across the darkened bedroom to get my dressing gown. Believe it or not, even in this befuddled state I find myself thinking, ‘Oh, this could make quite a funny blog for Diabetes UK.’ This thought cheers me on as I stumble, Oliver Reed like, through to Joe’s room. ‘I can test his blood sugars, stagger back to bed, sleep through until morning, then write a hilarious account of my pseudo-inebriated nocturnal episode while I have my breakfast. Sweet!’
The first kink in my plan comes when I realise that Joe’s blood glucose meter, his finger-pricker, and the pot of test strips are nowhere to be seen. I have to force myself slightly closer towards being actually awake to think where they might be. Wait, he keeps it all in his pocket during the daytime, it’s probably still in there. I locate his jeans on the chair by his desk and fish around in his pocket. However, instead of the meter and its associated paraphernalia, my hand encounters nothing but a soggy tissue. Yum! Virus-laden snot all over my fingers! Delightful!
I try the other pocket, and this time I get lucky. It’s only a matter of time now before I can finish testing his glucose and stagger back to bed to sleep through until morning. As I wrestle his hand out from under the covers to prick his finger, I hear his pump alarm going off, as obnoxiously as my smartphone. ‘Maybe he’s a bit out of range,’ I think. ‘I’ll probably have to give him a little correction bolus, then I can stagger back to bed and sleep through until morning.’ I still haven’t worked out what’s wrong with this picture.
The little bead of blood goes into the end of the test strip and a few seconds later the meter shows the result. He’s on seventeen-point-something.
Finally I work out where I’ve been going wrong with my thinking. The reason I’ve woken myself up to test him in the first place is because he could be out of range. He’s been high pretty much the whole time since Jacqui woke up with him in the middle of Friday night. His pump’s buzzing because his CGM thinks he’s out of range. The chances of me being able to deal with the situation simply and stagger back to bed and sleep through until morning were always going to be low. Now the BG meter has confirmed what I should have realised – that I’m going to have to take action which will require me to wake up later on in the night and test him again. Maybe it’s just my befuddled state, but I swear I can hear Joe’s BG meter whispering to his pump: ‘Blimey, he’s really slow on the uptake, isn’t he? He must be the crappest diabetes parent in the world.’
I realise I need to raise my game. First, I give Joe a full correction bolus. Then I remember that we had a takeaway last night and, unusually, Tom didn’t tell me what his blood sugars were doing before I went to sleep. I clamber up the stairs to the top floor, wash my hands particularly carefully – remembering the tissue incident – and test Tom’s glucose. Mercifully, his level is more or less normal (8.0 mmol/L). At least I won’t have to test him again before tomorrow.
Now, finally, it’s time for me to stagger back down to my bed, even if I won’t be able to sleep through until morning. Before my head hits the pillow, I have the hateful task of having to set the alarm again. I set it to go off again in about an hour’s time, so I can check that Joe’s blood sugar level is coming down. Then I lie down, turn over, and wait for sleep to come.
Come on, sleep! It’s the middle of the night! Time for you to come along and take me off to the land of nod! Come up, sleep, hurry up about it! If you don’t come soon, that sodding alarm will be going off again! Come on, sleep, be reasonable! You can’t let the fact that I’ve interrupted you by getting up to carry out medical procedures put you off! Come on, sleep, this is getting annoyi…
There’s a tinny rumble, and the satanic sound of electronic cicadas beeps obnoxiously from the smartphone lying by my side of the bed. Oh, I must have got back to sleep eventually then. But now I’m awake. Why is my phone playing a different alarm sound this time? No idea. This is kind of worse than last time. As I flounder around ineffectually pawing at the carpet in an inept attempt to pick up my dressing gown where I think I dropped it before getting back into bed, I feel not just drunk but also like I’ve been punched in the face.
I lumber through to Joe like a groaning thing from a George A Romero movie, and test him again. My heart sinks as I hear his pump alarming while I wait for his meter to tell me what his glucose is doing. Please, for the sake of all that is holy, don’t let it be so radically out of range that I have to wake up AGAIN. No, praise be! He’s on thirteen point something! Not great, but not bad enough to demand another wake-up. I give him another correction bolus and go back to bed.
This time, sweet sleep comes much quicker, and before you know it, I’m waking up – this time unaided by an obnoxious smartphone. I check the time. 7.40am. Not a bad time to wake up on a Sunday morning. I read for a bit, then get up and check Joe again, He’s down to ten point something. I give him another correction bolus, then go downstairs for breakfast, taking my laptop with me.
I sit there typing this hilarious blog as I eat my toast. Towards the end, I realise that there’s no real moral to this story. I sit for a moment, trying to think what the conclusion should be. Then I realise I’ve been writing for over an hour, and I should probably check Joe again. This time, the process of having his finger pricked wakes him up. ‘Seven point one, good and healthy!’ I declare with satisfaction. Joe decides he’s had enough sleep and decides to stay in bed reading.
I come back down to finish my blog. Maybe the moral is how knackering it is dealing with a chronic health condition like type 1 diabetes? No, I’ve already done that. Maybe it’s how quickly your body forgets the toll it takes to deliberately interrupt your sleep to do blood glucose tests at night? Not bad, but I’m not sure how useful that is as a moral.
OK then, how about this?
Joe’s 17 now, and at the beginning of December he’ll be 18. By this time next year, if everything goes to plan, he’ll be at university and we won’t be there to test him at night if he has a virus and his blood sugars are as high as Jim Morrison. What a massive, unfair responsibility that is on somebody who’s technically a young adult but in many ways is still just a young kid. I know he’s mature and responsible and he’ll rise to the challenge. But why the hell should he have to?
Afterthought – Jacqui is reading through my blog checking for mistakes, and as she gets to the bit where I test Tom she gets exasperated and cries out: ‘You DID know what Tom was on before he went to sleep, because I TOLD you what he was on!’ OK, so it seems I now have to change the moral.
It turns out that I AM the worst diabetes parent in the world. Official.