Complications Have Names, Too.

If you’re on Twitter, or if you follow The Grumpy Pumper online, you’ve probably seen his many posts chronicling long term treatment for a foot ulcer (or a foot condition – my memory is a bit patchy here). Grumps quickly realised that there was a lot of stigma attached to diabetes complications, and that not that many people were inclined to talk openly about them.

That’s where the hashtag #TalkAboutComplications was born. Grumps hosted a series of guest posts on his blog, where people began to share their own stories around dealing with diabetes complications. There’s also a Facebook group ‘Talk About Complications’ run by the International Diabetes Federation where people can find peer support around diabetes complications.

Renza Scibilia jumped on board, doing what she does best in addressing the need for better language and attitudes around diabetes complications in order to remove the stigma associated with them. Because, #LanguageMatters too.

Ascensia Diabetes Care are also working in consultation with Grumps to encourage more open discussions online. At the ADC in August last year, I learned that the goal was to bring the active conversation that was happening on Twitter over to Facebook and Instagram, among broader social media platforms.

There’s currently a new campaign running on the Contour Diabetes Solutions page on Facebook. It started recently, I believe that there is still more content to come.

Earlier today a Tweet caught my eye, observing that complications are still presented as an end point, posing the question as to how can we do better.

Which brings me to my next point. I say this as someone who certainly isn’t a diabetes veteran, or experienced a diabetes complication of my own.

I don’t like the words ‘diabetes complications.’ From the minute my diabetes educator brought them up as a possibility of what could happen when I was first diagnosed, they felt like dirty words.

Associating health conditions with diabetes infer that I got them because I did something wrong. Because I didn’t manage my diabetes well enough. I read the phrase diabetes complications, and I personally see blame on my diabetes straight away.

I wonder why we don’t simply call these conditions by their actual names. I have a very rough idea of some of the diabetes related conditions that may pop up, but I definitely don’t know enough about them. Maybe if we were more specific about what diabetes complications are, instead of focussing on them being a result of diabetes, it might be easier for me to learn more about them. Because ‘diabetes complications’ aren’t exactly clickbait to me.

We human beings have this insatiable need to know how or why something happened. In my experience, at least, Italians love to talk. Everyone has to know how something happened. Just think about loss, for example.

Does it really matter how I developed another health condition? Does that really bring any comfort to the person actually going through it?

Complications have names, too.

Photo credit: Ascensia Diabetes Care.

Urgh

I woke up this morning to the gentle sound of my sleep cycle alarm. It was a lot darker than usual, because I was waking up a lot earlier than usual today.

My first thought was that I hadn’t stirred during the night. Nor had my CGM gathered my attention for the last eight hours.

I reached for my iPhone and swiped left.

‘Oh, shit!’ I exclaimed at the widget on my home screen as a wave of furiosity instantly hit me.

I’d spent the past three hours riding around the 11 mark. Possibly higher, because I forgot to check my blood sugar for reference which I like to do when I’m high.

I wondered how on earth I was only finding about this now, and unlocked my iPhone with a press of my thumbprint. When I opened up the Dex app, I found the culprit in a high alarm that had been completely turned off.

I have no idea whatsoever how that happened. I distinctly remember opening the app and lowering my high alert from 8mmol to 7mmol last night, like I do every other night before bed.

As I flipped my phone sideways and traced that high back through the night, I was even more furious to find that it had risen from pretty much the minute I rested my head on the pillow at around 10pm.

But it also made complete sense, given I’d consumed a fair few carbs to absorb the dinner I’d over bolused for. I also can’t bring myself to treat hypos with glucose tabs anymore, so there may or may not have been a few raids of the cupboard involved. But I’m making sure I buy some juice today, for a change.

As I bolused super early for my breakfast, got out of bed and jumped into the shower, how that high alert escaped me is still a complete and utter mystery.

Starting Small.

I love to drink coffee. But it was never palatable without a good 2 teaspoons of sugar mixed inside. So, I reduced it to one and a half. Then, when I got used to the taste, I reduced it to one. Then half a teaspoon. If you were to put sugar in my coffee today, I’d tell you that I can only taste sugar.

I was feeling exhausted. Far too often. Eventually, I stumbled across an article and realised that I wasn’t eating nearly enough in order to fuel my daily activities. So, I started setting my alarm to wake me half an hour earlier each morning to give me time to scramble two eggs and toast two pieces of bread. I started using my Sunday afternoons to better prepare ahead for weekday lunches. Today, I don’t feel half as exhausted (or deprived) as I once did.

I never used to count carbohydrates. I would just swag my insulin dose, and end up with either crazy highs or intense lows. When I began using an insulin pump, I set an intention with my family that I would weigh my food at dinner time to better count my carbs. That added effort before dinner time has definitely made my insulin dosing more effective.

Managing diabetes does my head in. Like, every single little thing I can think of affects my blood sugar. What I ate, how active I was today, how well I slept last night, where my BG has been sitting overnight, and even what month of the year it is! So, I began making notes. Both on paper, and mentally. Paying closer attention to what was happening with my blood sugars, and learning what I would need to do for next time. Today, I feel far more confident in being able to make those adjustments to keep my blood sugars where I want them to be.

For some time, I’ve been waking up feeling like I haven’t gotten a good night’s sleep. It’s been a real struggle to get up and going throughout the morning. So, at the turn of the new year, I decided to prioritise sleep. I would ‘switch off’ an hour before bed, so that I don’t go to sleep while my mind is still buzzing. Quite honestly, it’s been one of the best changes that I’ve made for myself (more on that one, soon).

Today, I feel pretty happy about where I am at with my diabetes. I’m not perfect, and I don’t always manage to do everything I’ve outlined here religiously each day. There are still things I’m working on improving, too.

However when I think about where I am today, it wasn’t the quick overnight fix I was desperately seeking when I started using an insulin pump four years ago that got me here.

It was the sum of small, gradual changes that I’ve made over the past four years that suited my own needs. This list is certainly not exhaustive, but it’s some of my highlights.

Some of those changes have been directly related to the day to day management of my diabetes. Some of those changes have been more around my routine and habits, which I guess better support me in showing up to manage my diabetes each day. There were equally things that I was happy with, or didn’t want to change (carbs and coffee, to name two).

I don’t believe for a second that there’s only one way to manage diabetes. But I know that I spent years thinking about, and feeling overwhelmed by all of the changes and improvements that I wanted to make.

So I guess the point of this post is that if you are thinking about making changes at the start of a new year, start small. Pick one tiny thing that you could do each day that might further your goal. Above all, be patient.

I promise you’ll reap the rewards.