As I’ve been looping now for a little bit, I thought it was worthwhile to share one aspect of the experience that’s perhaps not so frequently discussed.
In the past 12 months I’ve gone from MDI to pumping to SmartGuard to autonomous Closed Looping. By anyone’s measure, that’s a pretty phenomenal rate of change.
Throughout that period, the transitions have been straightforward, well understood and I’ve been in control of it. It’s been done at the pace I have selected and in a reasonably quantitative fashion, so that I’ve been clear about what’s going on at all points throughout the process. I’ve written blogs about what I’ve observed and been fairly clear when talking to people what it has entailed.
The biggest jump out of all of these has been the move from Smartguard to Hybrid Closed Loop. And not just from a “managing diabetes” perspective. Psychologically, it’s rather more of a jump than perhaps I had realised when I embarked on the journey, and it’s only when I look back now I can see how it played itself out.
So let’s start with the move off MDI to pump. This was something I wanted to do, and something that I thought looked straightforward. It was fairly simple, as far as I was concerned, to take my normal insulin use and transpose to a pump basal rate, then monitor it with continuous glucose recording in order to optimise it. I wasn’t bothered about being attached as I had been attached to a sensor for a year beforehand. That change, for me contained no anxiety. It was an opportunity.
Moving on to the 640G with Smartguard was also a challenge but raised my intellectual curiosity. Could it really live up to the idea? I felt the need to test its efficacy and was really enthused with the idea of what it would be able to do. Again, it lived up to my expectations, and as I wrote about going to Glastonbury, allowed a different way to manage my diabetes.
So when I embarked on the openAPS trail, it was with a sense of enthusiasm. I was massively looking forward to moving onto something different and that, in theory, would help me maintain a better level of management. I won’t pretend that it wasn’t slightly frustrating as I ran into various tricky issues that needed to be overcome, but I was pleased that I was able to create a loop and that it ran.
The bigger challenge was what came next. I’d built it myself, so that meant I knew how it worked, what went into it, had a decent idea of how it was working out what to do and what the inputs were. But stepping up to turning it on full time was much harder than I had imagined it would be. Before I’d even turn it over to run my diabetes for me overnight, I had to run it for multiple nights to make sure I was confident in the decisions it was making (even though there were thousands of hours of experience with it already booked). I felt a certain level of trepidation about handing this over.
The same was true when it came to flipping over to running it during the day. For the first couple of weeks, I spent the large amounts of time with the Nightscout monitor site readily available, able to see what was going on at a moments notice. I also had SSH ready to go at the drop of a hat, just to double check the logs and make sure nothing was amiss. It wasn’t just that I was concerned that I may be missing a loop cycle, but also that it wasn’t doing what it was supposed to.
“But it’s just a machine”, I hear you say, “An autonomous machine…”. It is, but:
- It is a machine like no other I have ever used.
- It is a machine that takes over a significant part of my life from me and does it without my intervention.
- It is a machine that means I no longer have to do things, because it replaces what I’ve been doing.
- It is a machine that takes a level of responsibility out of my hands.
- It is a machine that reduces my ability to control what’s going on.
- It is a machine that, were it to truly go wrong, could have significant and unpleasant consequences.
I know it has safeguards aplenty and that it doesn’t have the ability to deliver the knockout blows that could cause that to happen, and that I set the limits of those safeguards, but that didn’t stop the initial trepidation taking place. I think the key bullet above is that it takes the responsibility for monitoring and management out of my hands. A machine that changes how control works. I am no longer in full control.
Accepting that was the hurdle to overcome. It’s a surprisingly high hurdle, but it’s awfully pleasant when you settle down into the truth that it can do it, and can do it rather well. In many ways, even better than you!
Now I’m not going to pretend that it’s been bad. It hasn’t. It’s been entirely the opposite. It’s amazing. When it (either OpenAPS or Loop) reacts to changing glucose levels and coils you back in. When it ups basal rates because you are ill and stops the extra highs that you sometimes get in this context. That it provides feedback so you can set an “illness” fallback basal rate to deal with the issues. That it stops lows better than Smartguard has and better than that, stops the rebound highs that can occur with SmartGuard. And that after two months of looping, on and off at first and now constantly, I wouldn’t go back.
But here’s the BUT. If I felt a sense of trepidation, and nervousness about moving onto a closed loop that can even manage meal corrections, about giving up control to an autonomous machine, and I know what it is doing, how are others going to take it? It’s not only a bit of a change, it’s a huge paradigm shift.
For some, they won’t care. I suspect that anyone who doesn’t spend a lot of time being concerned about their diabetes, if they can cope with the attachment of the device, wouldn’t particularly struggle with the idea of an autonomous system doing “stuff”.
But for those who do? It’s perhaps a much bigger step. Dont’ get me wrong, I think it will come. And I think it will come relatively quickly, but I don’t think we can underestimate that for many it will be a challenge.
As a type 1 diabetic, you have to take control of your body. It#s just something that comes with the territory, but it also means that relinquishing that control is a much bugger deal. A very seriously much bigger deal. We know people don’t want to try pumps due to this. Autonomous closed loops are a much bigger step.
Those of us that have made it across the chasm are the ones putting up the bridge. We need to be there when more people can access this type of technology to encourage them across and help them understand. It’s okay to give up control.