Aggressive Treatment – by Olly Double

I’ve never been a brilliant sleeper. Chuck a bit of stress into my life and I’ll either not be able to get to sleep in the first place, or – much more commonly in recent years – I’ll wake up at stupid o’clock and not be able to get back to sleep. So I wasn’t too pleased yesterday morning when I was woken by the annoying miniature police siren of Joe’s continuous glucose monitoring system.

Everything sounds louder at night, and even though it’s a pathetically tinny little sound, there it was drifting out through Joe’s open bedroom door and in through my earhole. I think the sound invaded my confused dream state before I fully woke up and realised I’d need to lug myself through and check his blood with a finger prick test.

His pump told me the CGMS thought his blood sugar was low, but when I tested him he was on 4.3 mmol/L. I checked the time. 5am. Would it be OK to leave him be, or was there a chance he’d go hypo in the hour and a half between now and getting-up time? I decided to set his basal insulin rate to zero for half an hour, with the idea that this should stop his glucose falling any further. Given I was already awake, I thought I might as well also check Tom. His blood sugar was running high, so I gave him a correction bolus…

By the time I came back downstairs to the middle floor, Joe’s CGMS was already alarming again. I was now wide awake and lucid enough to consider going out to the shed, grabbing a lump hammer, and wreaking a smashy vengeance on Joe’s bleeping insulin pump. In the event, I controlled my rage and just went and cancelled the alarm instead. I really wish that when you update the pump with the level from the finger prick test, it could remember that it’s been informed that the blood sugar’s OK and therefore wouldn’t start its idiotically obnoxious alarming again.

I crawled back into bed, and although my body firmly intended to go back to sleep again, my brain had other ideas. It had decided to make me think about all the difficult, anxiety-provoking things that awaited me at work that day. I put the light on to see if it would help if I read for a bit, but it turned out I was too tired to concentrate on the words on the page. Too tired to read, too wide awake to sleep. Is that even possible?

At 6.35, my radio alarm went off as it does every weekday. It’s much less obnoxious than the CGMS alarm. It gently fades in with the sounds of Radio 4’s Today programme. I’m so used to it that I spring awake as soon as the fade-in starts, even when the volume is still infinitesimal. On this particular day, I was already all too bloody awake and the initial sound simply made my heart sink. The night was officially over. No more sleep for me.

Then the next story came onto the radio and James Naughtie was announcing ‘a huge fall in the increased mortality rates of people with diabetes’. Apparently, in the mid-1990s the mortality rate for people with diabetes was twice as high as for people without it, but now the rate is only one and a half times as high. I felt somewhat cheered. We still have a long way to go, but the fact is that people with diabetes are living longer than they used to, and when both of your children suffer from the condition, that’s the kind of news you really want to hear. It’s thought that one of the reasons is because diabetes is being treated more aggressively than it used to be, and we’re now really reaping the benefits.

I hauled myself out of bed and went and checked the boys’ blood sugars. Joe’s CGMS alarm was going off again. That bloody thing! Turns out that in spite of reducing Joe’s basal insulin rate, he’d still fallen to 3.9 mmol/L and had to start his day with a swig of Lucozade to bring him up from his hypo. Tom had come down but was still a bit high and needed another correction bolus.

Of course, I shouldn’t get annoyed by the CGMS alarm going off. It’s a bit like shooting the messenger. It was right when it woke me up at 5am. Joe’s blood sugars were starting to dip a bit low, and even though the action I took didn’t stop his hypo altogether, it probably avoided a more prolonged or severe one. And the correction boluses I gave to Tom probably gave him a much more stable start to the day than if I’d done nothing. In fact, since Joe and Tom went onto insulin pumps and started using CGMS, their blood sugars have been much more tightly controlled, and as a result their HbA1C results have been much better than they used to be. It might mean we have to work a bit harder, but the evidence suggests that this kind of aggressive treatment really pays off in the long run.

I only wish it didn’t leave me feeling so knackered.

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You are all so lucky to have these optional treatments and means of monitoring. I live on St Helena where we have no specialists in diabetics, although GPs do their best but advice compared to what you guys receive is minimal. We have just 3 types of insulin available to us – given by injection and this comes in the old style bottles of course. Only in the last few months are pens being introduced to only some of the 600 plus known diabetics out of a population of 4000. I am one of two patients on trial these last few weeks using the newly introduced Lantus as I have had poor diabetic control for most of the 15 years I have been a diabetic and now feeling the effects. As I needed to try this treatment I have to pay the full cost of importing this to the island. I search the internet to try to understand and get help with managing blood sugar levels. I also pay over £50 per month for my treatment out of a take home salary of £800 per month. (I am an above average wage earner). This is not a complaint as I consider myself more fortunate than a lot of other people in poorer countries but I say this to emphasise the level of support available here and how much I would like to get in touch with anyone out there who might be using Lantus and would be willing to share how you are coping and how you manage your diabetes.

hi i have just came across your blog and i enjoyed reading it, like you i know what its like to have to kids that are T1 diabete and having to check on them during the night. where do i find out more info about CGM machines as that would help my daugthers.

I know what you mean…. those CGMs do need a good kicking now and then. There’s no button that says ‘STFU’ when when the BG’s gone into the pump so it should ‘know’ it’s OK. I think voice recognition in the pump would be a great feature. All the aggressive treatment is definitely working and longer life expectancy is excellent, but it’s only happening because diabetics and their parents are driving themselves nuts being good at it. You do have to climb into the machines and become pancreatic yourself, or else there’s no point having the technology. Ergo – knackered.

Hi, just remember the capillary (i.e. finger prick) glucose is 10 minutes behind your actual glucose so although the pump alarmed and the finger prick was ok then his actual reading would be lower if the glucose level was on its way down. Hence why you don’t recheck capillary glucose readings 10 minutes after giving hypo treatments as they are usually lower than before the treatment was given. I hope you get some better nights of sleep though. (from a continual nocturnal hypo-er who has been a pumper for 3 years (and also a diabetic nurse).

Another fab blog Olly. Am also in your club of CGM alarms sounding from my daughter. They are fantastic pieces of kit when they are right but I really begrudge the constant alarms when they are out. Damned things but I wouldn’t swap them to be honest, I love them even though I would love to smash it with a hammer in the middle of the night as well. Hope you got some sleep the next night

Well done you! Its not easy, is it.? Those CGMs sound fab though. I wish I had one. Had two hypos in night for no reason I can really fathom except walked dog at 9pm for 20 mins ? If I had one of those I imagine I would not have gone down so low

Oh and there’s me feeling sorry for myself because my own hypo symptoms wake me up from my slumber. Doesn’t bear thinking about that one of my daughters might have diabetes! Hats off to you Olly!

Im sorry for your lost sleep. I would say been there do that but honestly telling someone who is suffering that you also suffer seems asinine. Im sorry I don’t know you and shouldn’t cuss. The idea that another parent suffers never makes me feel better – I just feel worse because I end up feeling bad for them.
I am glad you hear the CGM. My daughter is currently wearing a CGM that I can’t discuss because it is not FDA approved and she is part of a trial. For all I know you are using the CGM that we are trying to get approved here in the states.
Anyway I can’t hear it from her room and she just silences it without really even waking up. Right now I would welcome a fog horn. I too have 2 kids with T1 and a 3rd kid that well – diabetes is in a holding pattern until we redue his last GTT that he failed.
It is good news that the mortality rate for pwd has decreased. I am grateful always for the improved technology and management techniques. Still Id like to see that it is equal with those without D or better yet – no diabetes. we will get there – I won’t say in 5 years or even 10 because you don’t know me yet and if I say 5-10 years even I would want to punch myself.
I hope you get some sleep soon.