A day without a loop – it feels like an eternity. As crazy as it seems. But why? Well let’s start at the beginning, and then I hope you’ll see.
Yesterday evening, it had reached the point where I was seeing more “???” than numbers from my Dexcom G5 set up, so there was only one option at that point. Change the sensor. A process I’ve done many time before. So I did. My last sensor in the box with more due to arrive this week. No problem.
Half an hour into the restart and I got a “Sensor failure, replace sensor” alarm. Slightly perturbed, I tried again. Another half an hour went by and the same issue. I gave it one more try, but no, nothing. And no spares. I had to resign myself to the fact that I was without a loop until the delivery of the new ones. It was time to take the retrograde step of moving off a 722 pump to a 640G and “only” having Smartguard to live with.
I’d done this for months before, so it wasn’t like it was hard to do, and I’d spare Enlite sensors, so once again, a perfectly usable set-up. Just, well, no loop, unless I rolled out OpenAPS and the 640G uploader once again, which wasn’t that portable. I decided that I wouldn’t do this and would just run with Smartguard, as I knew what I was doing. It would be fine.
Well, maybe I need to rethink that decision. Maybe, I was wrong. And it’s been less than 24 hours without the loop. I’d only been using it for a little over a month.
I wrote about the psychological impact of going on to the system, and the need to give up “control” to a machine before. But it’s remarkable how quickly, once you accept this, you don’t give it a second thought. And now I miss it. I miss that I don’t have to be concerned about what my BG level is doing and that there isn’t something there just sorting it out for me. I miss that I don’t have to think about the increases in blood glucose level driven by protein rich breakfasts that mean I have to bolus three hours after I’ve eaten. I miss that it was just being taken care of. I miss that I can forget about my diabetes for a few hours a day, in a way that I’ve never been able to in nearly 28 years.
And that’s it. That’s the point. With the loop running in the background, I could forget about it, safely. I didn’t need to think about my diabetes in the same way. It was much less something I had to be aware of and making decisions on 24/7. If my bg levels went up, for whatever reason, they also came back down. That’s the real world benefit of a loop. It takes away some of the constant pressure that is always there with T1.
So what does this mean in the real world? Well I’m taking a sample of n=1 and extrapolating how I feel to n=20mn population, so it’s clearly not a good representation, but I’d bet that every single one of the n=150 or so OpenAPS users and Loop users would feel the same. With loop, please, rather than without.
People often talk about the “burden of diabetes” and I’d never really thought about it until my loop went off. A month of not having to think about it 18 hours a day makes you realise just how much you were thinking about it 18 hours a day beforehand.
Whilst I meander around the point, there is one. And it’s this:
However expensive diabetes technology is, when it works like this and makes life easier to live, then it should be available to everyone, in every jurisdiction, with every type of healthcare scheme, and it should be funded.
For the UK, when the first supported commercial pumps come into play, NICE should be taking their QALY analysis and stuffing it down the toilet. The real benefit of closed loop systems is not a better Hba1C or lower glycaemic variability. These are simply corollaries of using one, and are similar, in their way, to improving outcomes by dealing with Diabetes Distress. The benefit is simply “Life”.
It’s relieving the ongoing, neverending pressure that every Type 1 Diabetes experiences. Many of us don’t like the word suffer, because we feel it doesn’t reflect what we do. But after a month with a closed loop system, you know what? That’s exactly what we do. We’ve simply learned to cope.
So there you have it. That’s what I think. Closed loops are not simply therapeutic devices that give better clinical outcomes. They are so much more. They are a technological marvel that relieves the ongoing psychological pressures of living with Type 1 Diabetes, and in the longer term, the mental health of those using them will be better handled. They are far from a cure, but they are about as close as we can currently get.
And for me? Well I’ll be hacking my 640G uploader and OpenAPS rig back together again, regardless of the portability or lack thereof, until I have Dexcom sensors once more. I’ve discovered I’d rather not be without my pancreas. Not at all.