I think we talk about blood glucose a lot. Of course we do, those numbers play a large role in our lives. They can dictate how our day will go, if we'll be sleeping that night, if we're grouchy, moody, exhausted, worried, in an intensive care unit, an ambulance or sat on the kitchen floor, surrounded by wrappers and juice boxes. They can (and often do) dictate how we are treated in the clinic, too. Modern thinking HCPs may see the numbers for what they really are - data and use that data as a way to maintain or improve the health of the Diabetic. Others might see the numbers as an easy way to form a judgement of the Diabetic, of being "too..." high? low? disengaged? Take your pick from those and many others.
I'm not writing about judgement or stigma, today. The blood glucose in the photo above is one of mine and it's a little high for me. So, because I'm writing about high BGs I thought it would be useful and authentic to show one of my high readings.
13.7 is a number which is in that area of "Hmmmm, I'm not feeling great. I'm not sick but something is wrong" for me. Do you have a blood glucose area like that? The number for this area has reduced in the last 5 years or so. It used to be the high teens, maybe twenties. Now that my BG management has improved, my feels have changed at different levels. Hypo symptoms are all but gone but the hyper symptoms are far stronger, far sooner.
A week ago, I managed to detach my pump tubing while I slept. I woke on 21 mmol/l and I can confirm that numbers in that vicinity now feel absolutely dreadful. Once I'd recovered from the shock of such a high number, I began to sweat profusely - so much that it felt like a hypo symptom. Treating it as such would've been disastrous. I also began to feel hungry, not long after correcting the high. Twitter users explained why that might be - My body didn't have the insulin on board to convert food into energy. I guess that explains why many newly diagnosed often complain about feeling so hungry all the time until they start getting shots of insulin. The hunger was combined with a terrible headache and a feeling of slugishness which lasted all day. All that from 3 or 4 hours of no insulin, following an accidental tube yanking.
Hypers feel terrible and I'm extremely lucky to have never been admitted to hospital with DKA because of one. However, I do have a history of not giving Diabetes enough attention for a lot of my life. That lack of attention undoubtedly played a part in me developing retinopathy in my 30s and as a result I live with the consequences today, in my mid 40s.
The fear of high blood glucose is very much a real thing for me, as you might imagine. I'd like to avoid further T1D related complications and live a good, long, life into old age. The fear is somewhat of a driver as is the experience of visual impairment in my 30s.
What can I do to avoid things going wrong again? The past has been and I cannot alter my choices from decades ago. I've accepted my mistakes and talk about them openly because it might help others to tread a safer path. I can only influence the now and the future. The now is making the most use of the tools that I have; a CGM and an insulin pump. I think I'm doing alright! I witter on about them through my social media all the time, take a look and form your own judgement. I'm doing alright but I can do better in the future, however. To achieve better I need the support of the NHS. I need NHS funding for a pump for the rest of my life or until technology & medicine change to a different way of treating T1D. Beyond that, I need NHS support in my use of closed-loop to manage my condition. I believe that's as good as things will get for me with the technology and insulins we have right now. It might be enough for me to live to a ripe old age without further complications.
The HCP who gives that the go-ahead can sleep soundly, knowing they went to work once and made a significant difference to someone else's life... maybe millions of lives, now and in the future. This will happen and I continue to push in different directions to make it happen soon.
Being a "patient patient" is usually a great idea because it shows an understanding for how things work, HCP red-tape, etc. I know that. However, such a narrative is difficult to accept if it comes from a person living without complications or the prospect of any, a person who does not have T1D or a person who does have T1D but is very happy with their current regime. Diabetes and the urgency of the technology to treat it really does vary.
Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!
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