Coast to coast on a continuous glucose monitor

It’s four in the morning; I’m tottering to the fridge to find some milk to put on some muesli. It’s not that I have the night time munchies, I’m not hungry – it’s this little box that I’m attached to that has woken me up, well actually it woke my wife who in turn woke me. It’s an insulin pump, I have type 1 diabetes and unfortunately my pancreas is bust – this box kindly pushes insulin in me, a bit more like a working pancreas.

What makes this chunky box of tricks wake me up is that I’m also connected to a continuous glucose monitor (CGM) which checks my blood sugar levels every five minutes. On this particular night it picked up that my blood sugars were worryingly low, so not only did it wake my wife up but it also suspended insulin delivery.

I have only been on the pump for a few weeks and prior to this I was on multiple daily injections, testing my blood six to eight times a day. I’d test before I went to bed and in the morning, often I’d wake up feeling like I’d been whacked with a spade with my blood sugars rising. What the CGM now tells me is that I was most likely having night time hypos, all treatable with the help of my diabetic nurse.

Normally the NHS is not so generous with CGMs as they are expensive, about £60 per sensor every six days and that excludes the transmitter which is £500 every year. They are often used by ladies trying to get pregnant (who need perfect blood sugars) – I’m pretty sure I’m not pregnant. Part of my reasoning to go on an insulin pump is that I’ve struggled to manage exercise and injections – it is easier to turn down the pump when I go out for a run than it is to change the effects of an injection I put in five hours before. All of this is going to come in useful next week as I run 190 miles coast to coast across the UK to raise money for JDRF, a charity who fund research to cure, treat and prevent type 1 diabetes. My father has diabetes and it would be kind of nice for my kids not to be faced with this lifestyle. Perhaps, just perhaps the research they do will help them reach their admirable goal of curing diabetes.

The CGM is immense help when out running as not only can it tell me what my blood sugars are doing but importantly it can tell me whether they are going up or down and how fast. In the past knowing that my blood sugar is 6.5 at a point in time is useful, but with the CGM it can tell me it’s 6.5 and falling rapidly. This would have me reaching for some glucose if I was out on a run.

I’m sure anyone who walks or runs up a hill as fast as they can will feel slightly sweaty, maybe a tad dizzy – symptoms not too dissimilar to a hypo. When out running I need to ask myself: “Am I unfit or is this a situation that needs a response with food?” Going out for say 10 hours running, I could find myself in this situation seven or eight times – without a CGM I’d have to take a punt that I’m OK or reach for a blood glucose meter, which don’t work that well in really cold weather.

As I head out in a few days’ time to run across the country I will also don a heart rate monitor, it helps me as someone doing this level exercise but also I’ve found that when my HR goes about 150 – 160 my blood sugars drop at an alarming rate. I’m hoping the use of the insulin pump can manage this better.

Coupled with a phone just in case, food and if in remote areas glycogen pen, I’m carrying around a reasonable amount of tech as you can see below.

I’m sure in years to come I’ll chuckle about carrying all of this. It would be nice to see a bit more integration, perhaps to see your blood glucose levels and heart rate on a watch. Maybe even set the delivery of the pump from a watch. The closed loop system of the CGM defining level of insulin being delivered sounds great but technically has many hoops to jump through. Whilst that nirvana is sought, more development could be done on making this technology accessible and useable (glucose monitors that work in the cold please).

Lastly, as I set off to run across the country I have to remind myself that for 40 years I’ve had a working pancreas – if you have one it’s an amazing bit of kit. I recently read this Facebook post from a mum of a six year old on a pump (she has given me permission to reprint):

“Omg…. I feel like my heart has just been ripped right out of my chest. My 6 year old, who has always been so strong and never complained about being diabetic (diagnosed at 2), broke down in tears as we removed her cannula and properly sobbed. Something I’ve never seen her do about anything. She is the most smiley, happy child around. She then said she wished there was a cure to diabetes. She didn’t want to be different to everyone anymore and that she just wished her body would produce insulin. It broke my heart. She cried, I cried, we hugged for ages and we talked. It just seemed such a grown up thing to say, and a cure has never been anything I have talked of so I don’t know where she got that from. I just don’t know what to say and how to help her cope.”

Let’s hope that technology can help that mum and six year old have a better life.

For more details on my exploits as an endurance runner and how support JDRF visit www.howfast.org