Diabetes Musings

Family. What would I do without them.

My own family have provided me with an exceptionally solid grounding to be able to live with, and manage my diabetes, really well. They have gone above and beyond to provide me with everything I need to manage my diabetes really, really well. A blood glucose meter, test strips, insulin, jelly beans, private health insurance, an insulin pump, consumables, food on the table, a roof over my head and good values, to name a few.

Sure, as I’ve grown older I’ve shouldered a great deal more of these responsibilities, but Mum and Dad have helped me out significantly. And have always made it clear that if I ever need some assistance, that I can come to them.

They respect my boundaries when it comes to managing my diabetes independently – and I know how hard that must be. I can’t imagine how they would feel watching me stare intensely into my pump, hearing the clicks of a lancing device, or casually placing a few orange glucose tabs into my mouth mid conversation. I can only liken it to my own feelings when I see members of my own family unwell – and I know I don’t like that one bit.

They’ve supported this blog, my diabetes adventures and taken an interest when I come home eagerly talking about what I got up to or what I have learned.

Over the years, I’ve also been lucky enough to find a second family of people. They’re affectionately known as the DOC in my mind (and that’s ‘doc’ and not ‘D-O-C’), but definitely spans the broader diabetes community as well.

When I first began actively using Twitter a few years ago, I never would have guessed that diabetes would become such a big part of my life through the people I’ve linked up with locally, interstate and even globally. People with diabetes, and people supporting other people with diabetes. I am so grateful for your conversations and your insights that continue to broaden my perspectives on diabetes and challenge my thought processes.

Largely, my diabetes family are the people who simply ‘get’ it. The people who are walking the same path that I have. The people who I can message, knowing that they’re probably thinking exactly what I am thinking. The people who have inspired me to continue to manage my diabetes in the best way that I can. The people who have made the great big world around me much, much smaller.

It’s World Diabetes Day, and this year sees the second of a two-year focus on the role that families can play in supporting a person with diabetes, from both Diabetes Australia and the International Diabetes Federation.

Cheers to #mydiabetesfamily.

Happy World Diabetes Day.

For any resident patron of the DOC, November 1st signals the beginning of Diabetes Awareness Month.

Diabetes month technically isn’t a part of our calendar here in Australia. We mark World Diabetes Day on November the 14th with the rest of the globe. However, technically our National Diabetes Week is observed every July.

Yet undoubtedly, it will still be pretty hard to avoid my social media feeds turning blue. Companies and orgs in the diabetes space will be launching campaigns to commemorate the occasion and raise awareness of their role in supporting PWD. Amplification of diabetes awareness throughout the DOC and beyond is guaranteed. It will be hard not to feel obligated to join in with the DOC and spread some diabetes awareness of my own, too.

Diabetes month usually culminates on World Diabetes Day on the 14th of November, the birthday of Sir Frederick Banting. Banting discovered insulin, along with Charles Best and John MacLeod, the hormone that went on to save the lives of millions of people with diabetes around the globe.

World Diabetes Day always gives me a nice, warm fuzzy feeling, leaving me feeling united with my diabuddies near and far. In recent years it’s involved a 24 hour World Diabetes Day Twitter chat, checking in with some of my #OzDOC friends around the country, Diabetes Research WA’s annual ‘research reveal’ event, and time in the company of some of my tribe.

Above all, my friend Emily Vuong, who is one truly amazing diabetes instagrammer (@emilysdiabetes), will be running the New York Marathon this weekend and raising funds for JDRF Australia. Please throw your support behind her if you can.

In the midst of all of this amazing stuff, I still feel the need to remind myself that as a person with diabetes, every day is diabetes day. Every month is diabetes month. I have to turn up to manage my diabetes every single day rain, hail or shine. I invest a fair chunk of my spare time into diabetes, year round. I don’t have to go to any extraordinary lengths to raise awareness of diabetes, even though I probably will.

My next couple of weeks largely involve studying for final exams, ahead of a much needed break from uni for the Summer. I expect I’ll still be checking in here, as time allows.

So however you choose to spend November, just know that your worth as a person with diabetes is not a reflection on how much diabetes awareness you wish to raise.

Happy November.

I miss sleep.

You know, those nights where you don’t sleep too heavily, but not too lightly either. Those mornings where waking up just feels natural, and you genuinely feel refreshed.

For me at least, those kinds of days don’t happen often enough.

That doesn’t necessarily mean that I’m up chewing down glucose tabs at 2am every morning, or battling highs either. I’ve made a lot of gradual changes to my routine over the past year or so. Eating enough to fuel myself properly, experimenting with sleep apps, continually improving my blood glucose and going to bed at a fairly consistent time each night. While all of those things have definitely helped me to sleep and feel better, I still feel as though there’s some kind of secret sleep code that I haven’t yet managed to crack.

I think it’s moreso that I don’t ever get a break from thinking about diabetes. Ever. When I’m ready to go to bed at night, I still spend some time thinking about what my blood sugar is and where it’s likely to tread through the night. If I’m bordering the 4 mark, I’m wary of heightened insulin sensitivity and lows throughout the night. If I’m bordering the 8 mark, I’ll be contemplating a correction.

I still spend time thinking about what time I’ll be waking up in the morning, and what adjustments I’ll need to make to my basal pattern and insulin to support that. This week, for instance, I’ve been starting work an hour earlier than normal. It’s not a huge difference, but it still takes some planning and prep work before bed. I’m already noticing differences in my BG pattern just from starting my day an hour earlier (hello, lows!).

The first thing I think about the moment I stir in the middle of the night is my blood sugar. For much of the past nine years, that’s meant reaching for my meter, inserting a test strip and pricking my finger. With CGM, I’m lucky enough to simply swipe left to view the Dexcom widget on my iPhone. I’m so grateful to be in a place where, most nights, that number is grey. Which is Dexcom-speak for in range.

But I’m still thinking about diabetes. Diabetes doesn’t sleep just because I am.

If there’s one thing that I truly long for in lieu of a cure, it would definitely be a good night’s sleep.

There you have it. My first diabetes awareness post for diabetes month, and it’s not even November yet.

When I first stumbled across the DOC a few years ago, I suddenly found myself connected to other people with diabetes from all over the world. As I was bedding in for the night, there were people waking up on the other side of the world. It wasn’t uncommon for me to sit up, anticipating an update from some of my favourite diabetes blogs. Or to reach for my phone and Tweet my diabetes dilemma to the world at 3am, because I knew I’d always find people who’d get it. The first thing I’d do when I woke up in the morning was check my Twitter feeds, reeling from some of the developments that could happen within a night.

We live in a highly connected world thanks to social media. I feel like that level of connection is ever increasing. I am continually blown away at how many people are able to find that connection after diagnosis that took me five years to find. Perhaps that’s also the position that I’ve put myself in as a diabetes blogger. While I would trade it for the world, I can recall a few conversations this year around this somewhat ‘obligation’ to participate in such an interconnected world.

While I definitely still want and need the DOC and diabetes communities wrapped around me today, I think the way in which I want to participate has changed. I think there are still times where I am enthralled in my feeds and with what’s happening. But equally there are times, which seem to be ever-increasing, where I’m more than happy to take a backseat.

I’ve logged out of social media quite a few times this year, most recently for almost a week. While 95% of my interactions within the DOC are nothing but pleasant, it’s always the other 5% that aren’t pleasant that seem to outweigh the good. It’s always that other 5% that leave me questioning myself, my actions and my worth in this community – even though deep down I know that I have no reason to be doing so.

The DOC and broader diabetes community has changed my life for the better. It has truly made the great big world around me much, much smaller. In my head, I once believed that the DOC would simply disappear if I didn’t keep participating.

But at heart I know that the DOC will always be around for me if and when I need it, and I will continue to participate when and as I feel compelled to do so.

My first diabetes educator was a very matter-of-fact kind of a person. I saw her for a number of years in the outpatient clinic at the hospital. She taught me everything that there was to know about diabetes, and supported me in my desire to commence insulin pump therapy. She had my back when my endo berated my very first hba1c result within a very short time after diagnosis. (Sidenote: ‘You have very poor control’ is still etched into my brain to this very day…).

However, I guess her limitation was that she struggled to empathise beyond the diabetes textbook with the reality of day to day life with diabetes. You know, those little life hacks and shortcuts that we so often take with diabetes. Those practices that might not be exactly by the book, and yet we do them because they make life easier for us.

My memory may be foggy here, but I believe that said educator first introduced me to diabetes complications, in that same matter-of-fact kind of way. It wasn’t a purpose driven conversation, but rather something that came up in a matter-of-fact kind of way during our education sessions. The take home message went something along the lines of ‘manage your diabetes well, or otherwise complications could develop.’ Throw in every other healthcare professional asking me what my hba1c was the minute I disclosed my diabetes, and it was easy to feel that the pressure was on.

I was genuinely scared at the thought of developing diabetes complications during those early years of living with diabetes. Complications was a twitchy word in itself.

I vividly remember driving home from an exam at uni one afternoon, and hearing of a random act of kindness on the radio towards a woman with diabetes who’d recently had a limb amputated. I just remember feeling really twitchy and feeling my feet and confirming that they were there and working. I remember the guilt I felt for the imperfections. Namely the thongs that I was wearing instead of closed shoes, that my feet were cold and that my blood sugars were yo-yo-ing.

Here’s the thing. Diabetes complications were always, always presented to me as a consequence of not managing my diabetes well enough. I don’t blame my diabetes educator personally, because I truly believe that it’s an institutional practice. Nobody talked about complications as (relatively) openly as they do now. And that they are largely manageable, treatable, and certainly not the end. Well done to the Grumpy Pumper and other pioneers in this space who endeavour to make talking about complications feel just as normal as talking about diabetes.

Back in August, Bionic Wookiee David Burren made an outstanding comment challenging why diabetes complications have to be called diabetes complications. They’re not diabetes complications, but rather health conditions that are exacerbated by diabetes. I love this sentiment so, so much. While managing diabetes well will undoubtedly reduce my risk of developing complications, simply having diabetes could put us at a greater risk of developing related health conditions.

With a great deal of conversation around diabetes and language on Twitter this week, I’d once again like to say that language is not about me being nitpicky over whether you call me a diabetic or a person with diabetes. It’s not about being ‘nice’ to a person with diabetes. When we’re talking about or to people with diabetes, the words we use and the attitudes we convey have power. They influence our thoughts and feelings – look no further than my late-teenage self.

Above everything else, ‘manage your diabetes well or complications will develop’ did extremely little in the way of motivating me to better manage my diabetes. It was the human connection around diabetes that did. I think we all have a part to play in supporting that.

Language Matters.

(And there’s a position statement for that, right here.)