I have a helper who seems to know my diabetes even better than me

I was recently able to attend a Breakthrough T1D Discovery Day in London, a wonderful day of talks and demonstrations, as well as the chance to chat to other T1Ds, and all done amidst a resounding chorus of alarms emanating from hybrid closed loop (HCL) systems.

I’ve never sat in a room with lots of other people before where speakers reassure you that it’s really ok to beep and bleep and buzz and ring during their presentations. After forty years, T1D has for me become a lot noisier, and it’s not just the sounds of the new technologies, it’s also our voices in talking about it and, dare I say it, our excitement about the latest developments and what else may lie around the corner.

T1D in the family

T1D is rampant in my family. My brother and sister have it and uncles on each side of the family have it as well as some more distant relations. As a child I can remember seeing my uncles inject and I recall one having a contraption that looked like a handgun which he would hold against his leg and pull the trigger! Now that did look painful.

When I was diagnosed in 1985, I must admit I had the same level of ignorance most non-diabetics have about the condition. I’d seen family members taking injections and was aware that they didn’t take sugar in their tea nor enjoy sweet desserts after a meal. I also knew about hypos, mainly because it was an opportunity to partake of a Jelly Baby or two when someone had to burst open a packet in a hurry – after they’d gobbled their emergency handful of course. But I had no idea that it was about much more than that; matching carbs to insulin and trying to keep blood sugars in range so as to avoid long term damage. As a doctor told me, it was to be a 24 hours a day operation every day for the rest of my life. That was a bit of a downer.

Living with the condition

I was in my first year at university and having to mix two different insulins in one syringe and finger prick aren’t exactly cool things to be doing when you’re young and trying to impress, but, like everyone else I just got on with it and I got used to it and I found I could live a reasonably normal life and in many ways it made me stand out among my friends as everyone soon got to know ‘JP the diabetic guy’.

Since then, it’s been pretty uneventful. Decades of blood tests and the occasional arm bruising; eye screening and the wearing of sunglasses on a dark winter’s day imagining I’m a rock star; hospital check-ups and the little white lies when asked how my control has been. There have been downsides of course. Hypos are a pain. I had a very bad hypo many years ago where I passed out on the street and knocked out a few of my teeth, but such incidents are few and far between.

All in all, I’ve been plodding along doing the very best I can with what’s been made available to me. When I was first diagnosed a doctor assured me that there would be a cure in my lifetime. That hasn’t happened yet and I’m not sure it will but something else has changed drastically – and that’s in how we manage it.

Hybrid closed loop

I’ve been on HCL now for about three months and I can say with confidence that it has been the most amazing thing to happen in my forty years as a T1D. In fact, it feels almost as good as a cure. I’m on the Omnipod 5 with the Freestyle Libre 2 sensor.

They’ve both found a new home on my upper arm and I hardly notice they’re there. Rather than bounding around in endless peaks and troughs like they’re breakdancing, my sugar levels now move in a flatter, straighter line like they’re in a ballet. I’ll admit, this has taken me completely by surprise. I never thought I could ever remain in range for so much of the time.

HCL has been the most wonderful discovery at this later stage in life after decades of trying to do it all myself. Now, I have a helper who seems to know my diabetes even better than me. We all desperately want a cure but, in the meantime, HCL is the next best thing.

Good management of our T1D is crucial for us to enjoy long and healthy lives and the sooner everyone of all ages and in every part of the country gets whichever system attached to their bodies, the better.