World Diabetes Day: Going Back To My Roots

Once upon a time I was, for want of a better term, a “diabetes blogger”. By which I mean I wrote a blog dedicated to diabetes – my experiences, my thoughts and my fears. It was a good way of venting my frustrations at a time when I was burned out with my chronic health conditions and, as cheesy as it sounds, it helped me to put things in perspective and opened the door to a support I’d not previously known.

The problem was, it was only a diabetes blog. I frequently felt constrained by its title and niche when I wanted to go completely off topic. My readership was almost entirely people with diabetes themselves, who I felt wouldn’t be interested in my more mundane rumblings, although I know this restriction was entirely self imposed. But what frustrated me most of all was that there was no way through my blog to reach out to people beyond the diabetes community. Much as I liked being able to offer support to other through the means of “me too” and “I understand” sometimes I felt like I was preaching to the choir. These were people who did absolutely already get it, who believed as passionately as I do that research in the condition needs to remain a priority, and that we need and deserve access to the best technology we can get.

Gradually my passion for “diabetes blogging” faded away. I suppose I wasn’t in a place where it was a priority in my life any more. And simply living my struggles was enough, without thinking them through in order to write and share them as well.

That said, when I started this blog, diabetes was still in my mind. Newly pregnant, diabetes understandably had to take a central role. And I was keen to write about pregnancy with pre-existing diabetes. The difference this time was that my posts didn’t only focus on diabetes, but on all the routine aspects of a first pregnancy, from excitement to fear and back again.

Once I became a mum, the diabetes side of my blog faded again. I guess that whilst I was working hard to ensure my diabetes didn’t impact on my son, or my ability to breast feed him and keep him safe, I wasn’t in the mood to think about it any more than I had to in order to achieve these things. Sure, I write about it sometimes – like last week – but now I worry that my readership won’t understand or be interested in my rambling on blood glucose levels and insulin pumps.

Today, however, is World Diabetes Day. And it’s time that I went back to my roots. It’s time to out in to practice what I wanted to all those years ago. To share what it really means to live with diabetes with an audience of people who mainly have absolutely no reason to know, understand or care.

WDD_logo_EN_200pxI’ve written before about how diabetes reports in the media swing between terrible desolation and tales of magnificent achievements made despite diabetes. In the former category are the tales of awful complications and their cost to the health service. Stories of people who’ve been affected by complications – stories which are always edited to make it seem as though the person has not looked after themselves, glossing over the fact that the risk of complications is lessened by good control but cannot be entirely eliminated. Yes, you can do everything right, and still suffer, because that’s the true nature of the disease. The latter category includes people climbing mountains or achieving sporting excellence. Nothing wrong with that, but we need to remember that just because a person doesn’t achieve big things with diabetes, it doesn’t mean they are a failure either.

And what all these stories miss is the vast majority of people with type 1 diabetes who are just living and getting on with it. Fitting it in to their careers, their families and their every day lives as best they can. What these stories also miss is whilst it’s true that diabetes doesn’t have to stop you doing almost anything that you want to do, it’s still really hard work.

Really hard work.

When people ask me what it takes to live well with diabetes, I still struggle to answer concisely, even after all these years. But here’s an idea.

It takes hard work. A lot of hard work. And it takes organisation, planning and attention to detail. Dedication and commitment. It takes the ability to be self critical without giving in to self loathing. It takes courage to keep trying, even when nothing seems to work. It takes strength to face the fear of what can go wrong, and determination to keep going in the face of its relentless presence.

Because it never goes away. Not at Christmas, or on birthdays. Not for a weekend. Not even for your wedding day or the day your child is born.

Living well with diabetes takes multiple daily finger pricks to test blood sugar levels. It takes counting of every carbohydrate you eat, whilst also considering fat and protein, and expected activity levels. It takes organisation of medical supplies and medical appointments. It takes ensuring that you’re never without access to glucose in case of low blood sugars. And of course, it takes injections. Or cannula insertions and the wearing of an insulin pump on your person at all times.

But contrary to popular belief, the needles are by no means the worst part of diabetes. I still hear people say “I could never inject myself every day.” And my response is still “You would, if the alternative were to die.”

Diabetes is like a beast that needs constant and careful attention in order to keep it subdued and quiet. And the more successful we are at juggling the multitude of factors that affect it – food, stress, exercise, hormones, illness, the weather – the easier people think it is. But often, the easier we’re making it look, the harder we are paddling under the surface.

 

All of this said, we’re still lucky.

Yes, a cure would be nice. Or at least a means of prevention, or reversal of the early disease, to spare the next generation a lifetime of managing this chronic condition. But we have access to, and sometimes take for granted, so much. The technology in insulin pumps and continuous glucose monitors has come on leaps and bounds in the last decade. We’re getting ever closer to automation of control, via artificial pancreas research.

Yet just 100 years ago, insulin had not yet been discovered and diabetes was still a death sentence.

And we’ve lucky because in some parts of the world, it still is.

Diabetes is hard work to live with, but I’m so grateful that I get to live at all. For too many people, insulin and the very basics needed to manage diabetes are still out of reach.

If nothing else, I urge you to consider that today.

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