Making Connections - Diabetes Week guest post on DUK Blog

I was delighted to be asked to write a guest post for the Diabetes UK blog as part of Diabetes Week 2012. Diabetes UK’s theme this year is ‘Make a Connection’ – here are two takes on that:

1. Making connections is the worst thing about diabetes

Diabetes is, for want of a better word, *incredibly* annoying.

I can’t really comment on the vagaries of type 2 – though I have read enough comments from people trying to wrestle their type 2 control into submission to realise that it is at least as contrary and inconsistent as type 1. Let’s be honest, there are days when type 1 diabetes can seem to be deliberately out to get you. Some days it just seems to get it into its head to ‘go off on one’ and there is simply no reasoning with it. Confusion and contradiction abound.

It doesn’t help that on other days, weeks even, it can seem to be entirely reliable and meekly obedient. Behaving the way the doctors say it should. Ratios and factors all present and correct.

It doesn’t even help that of all the chronic conditions, diabetes is one of the most livable-with. If I was going to have to have a chronic condition, diabetes would be pretty high up the list of ones I’d choose.

I can remember comments I got from friends and colleagues in the years soon after diagnosis, “Oooh, I could NEVER inject myself! I don’t know how you can...” – as if that were the hard part! The injections, the testing, the clinic appointments… These are all minor inconveniences. Even carb counting is easy enough and becomes second nature after a short while.

The really tricky thing about living with diabetes is the number of variables involved in the day-to-day running of things – and all the inter-related connections between them. Whenever my levels go all over the place there always seem to be 101 possible causes, lots of head scratching and false-starts before things settle again. Only to go out of kilter a few weeks later.

The body is amazingly good at controlling blood glucose levels. Really, spectacularly good. Most ordinary people wandering about have NO idea of the complex goings-on inside them. The ebb and flow of hormones keeping blood glucose levels within a tiny range no matter what they eat or what they do. It’s only when you suddenly have to start playing at being your own pancreas that you realise how amazing the body is.

The difficulty for us, of course, is that the body is SO good, that it’s a pretty tough act to follow. If the body usually kept blood glucose levels somewhere between 2-20mmol/L we’d all be laughing . But there’s a lot to juggle when you are trying to ‘do it yourself’ and live up to the body’s high standards. The grams of carb eaten... The dose of insulin for those carbs... The likely speed of absorption of the carbs... Likewise the likely absorption profile of the insulin. Not to mention the background insulin required to cover output from the liver, or for that matter, the liver suddenly deciding that this hour, or day, or week needs far more (or less) glucose than normal. Activity? Illness? Stress? Ambient temperature? It’s a wonder we ever get a decent level.

It’s worth remembering that when you are having a bad week. Playing at being your own pancreas is a big ask. We won’t always have all the information. What worked brilliantly last month won’t necessarily work as well this week (because this week is, of course, slightly different in a million seemingly inconsequential ways).

There is never going to be a ‘right’, only ever a ‘right for now’. The best we can do is keep on testing, writing things down, looking for patterns and chasing the moving goalposts.

2. Making connections is the best thing about diabetes

Diabetes is, for want of a better word, *incredibly* annoying.

It can also feel like quite a lonely place to be. For perhaps 18 years I lived my diabetic life supported by friends and family, but without really knowing anyone else with diabetes. I’d met only a handful of people with type 1 in my life, and stumbled across a few more with type 2, but none of their experiences seemed to relate to a diabetes that was anything like mine.

After a while the suggestions and comments from my clinic team were all very well, but they didn’t seem to fit with what I was experiencing – or worse still, were things I’d already tried and knew didn’t work for me. I was having a few too many highs, a few too many lows (but then doesn’t everyone?). My HbA1c was OK-ish. I didn’t seem to be frying my eyes too rapidly. I supposed I convinced myself that this was as good as could be expected.

But then a few years back I had an unusually nasty hypo (long story, short trip to A&E). Suddenly my understanding changed. Good enough was no longer good enough. We began to write this blog as a family, to begin to think about diabetes in a slightly more ‘front of mind’ way.

I began testing far more frequently, writing everything down, looking for patterns. I began to look around for other people to compare notes with. Found and read some amazing blogs written by people with diabetes from all over the world. Joined forums where I could ask questions, read experiences, or just generally rant and moan about the silliness of it all.

There is nothing like making connections with other people who instantly ‘get it’.

There is no question you can ask that will be considered too silly or too obvious.

There is nothing like reading a post written by someone on the other side of the world who is able to express exactly how you feel about a shared experience.

There is nothing like sharing one of your experiences, only to give someone else a ‘lightbulb moment’ over something they have been struggling with for years.

There is nothing like sitting around a table at a social event and having everyone pull out a BG meter before eating.

Making connections gives you access to the latest thinking and approaches from clinics all around the country (or all over the world).

Making connections makes you feel less alone.

Making connections makes diabetes easier to live with.

There are hundreds of people all over the world (and just around the corner) who know what it’s like to face what you are facing every day. Who can encourage you and support you. Who can make your diabetes easier to manage.

Go and make some connections of your own.