Guest blog – I still love my pancreas and other things I have learned this year

We like to highlight some of the best diabetes blogs on the internet, and this time we have a guest post from Mike who set up his own blog, “Every day ups and downs“. We hope you enjoy reading it as much as we did – and do check out his blog. You can also follow him on Twitter.

My name is Mike and I’ve had Type 1 diabetes for around 20 years. Almost exactly a year ago I had a particularly nasty hypo. Looking back, although it seems a bit of an odd thing to say, I’m really glad I did.

The hypo itself involved a loss of speech function, a trip to casualty, concerns about a suspected stroke and generally shook me up a bit. Fortunately all turned out to be well, but it made us as a family begin to take a rather closer look my diabetes. I wrote at the time that when you’ve lived with a condition like diabetes for a good few years it’s very easy to let it slip into the background of the everyday.

You never completely forget about it of course, but you can stop thinking about it in any focussed, front-of-mind way. It’s just there, the elephant in the room, getting in the way and generally making a nuisance of itself, but in a strange sense almost ignored. My control over the years had always seemed pretty good. I had got this far without developing any significant complications (aside from the callouses I’d built up on the sides of my fingers from all those finger prick tests). I had a decent record with HbA1c tests, which monitor average blood glucose control over the last few months. I had a few too many highs, a few too many hypos; but then, doesn’t everyone?

By and large I suppose I had convinced myself that I was doing all that could be expected without living like a monk. Suddenly though, it felt like the goalposts had shifted. I knew I didn’t want to run ridiculously high with all the risks that entails, but neither did I want to have a hypo like that ever again. Good enough was no longer good enough.
We began to write a family blog. A place where we could explore our experience of living with diabetes from each of our different viewpoints. To turn the condition over and over. Poke at it with a stick. I began to look around on the internet for other people doing the same and discovered what the Americans call the Diabetes Online Community (the awesome D-OC to give it its full title). It has been an utter transformation.

There is nothing quite like reading an account of a diabetic day written on the other side of the world and feeling that the person knows exactly how you feel. There are forums and online communities where you can ask questions, share experiences or simply vent your frustrations among others who instantly ‘get it’. It becomes easy to compare the advice you have received and the approach of your clinic or GP with others around the world, or around the corner. Of course like any community there will be extremes of viewpoint and clashes of opinion, but it is easy enough to find a corner of the D-OC where you feel comfortable. For every ridiculous herbal ‘cure’ you will find proper ground-breaking scientific research sifted, debated and discovered by people who take the time to search for it because for them it is more than just a passing professional interest.

While I am very grateful to the Registrars, Consultants and Diabetes Specialist Nurses over the years who have spent time explaining aspects of diabetes to me, I can honestly say that I learned more in the first few months in the D-OC than I had done in the previous 20 years. Many seemingly inexplicable blood glucose results began to make sense. By sharing experiences with other diabetics, both Type 1 and Type 2, I have been able to try new techniques and approaches which have gone a long way to improving my day-to-day control and quality of life.

So I still love my pancreas, for all the other jobs it continues to do. I suppose I’ve even forgiven it for rather letting me down on the whole insulin-production front. I’ve discovered the absolutely crucial nature of basal insulin rates, even on MDI (multiple daily injections) and how these can be properly tested and adjusted. I have learned about Dawn Phenomenon, the Somogyi Effect and various other ways in which my liver often likes to take matters into its own hands releasing significant quantities of glucose and generally making things tricky.

I’ve found that many of the foods I had always thought were fine are no easier on my levels than a jam doughnut, and the value of systematic post-meal testing. I’ve realised the importance of considering the often overlooked emotional and psychological impact of the condition. I’ve finally begun to understand just a little of what it must be like to live with Type 2.

Most of all I’ve discovered that while diabetes of any type is frustrating, relentless and often seems infuriatingly inconsistent there are always new things you can try. Slight adjustments to make that will improve your control. It’s about doing your best every day, and not beating yourself up if things don’t go quite how you hoped. It’s about learning from mistakes and moving on. It’s about taking diabetes one test at a time.

So write that blog, post that comment, ask that forum question. You might just turn someone’s diabetes around. And if you are just beginning to discover this amazing community, come on in. There’s a lot we can learn from each other.

Mike K

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