Month: October 2019

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.)

After wearing a Dexcom G5 for the past five weeks, I can definitely appreciate why so many people within the DOC feel that it is such a game changer.

I’ve been using FreeStyle Libre intermittently for the past two and a half years. In that time I’ve become accustomed to the nature of continuous glucose data, and learned how to utilise this tool in managing my diabetes. It was extremely convenient, particularly since the launch of LibreLink which allowed me to scan the sensor using my iPhone. It was also a more affordable option than CGM, with less of a commitment out of my wallet (i.e. no transmitter needed).

But the Libre was still a costly option. It wasn’t perfect, either. There were sensors that were consistently out by 1 or 2 mmol, which was a bit frustrating. The device had a knack of accentuating movements in blood glucose after I’d eaten, and in those instances the device was difficult to trust. It was also extremely sensitive to environmental factors. Things like getting up out of bed in the morning, or shifting from a dark room to a bright one.

Taking all of this into account, I always felt that I benefitted most from using Libre intermittently, supplemented by an AccuChek Guide.

I knew that CGM would give me more options going forward if I wished to explore any commercial or DIY closed loop options in the future. I was also sick of spending money on things that I didn’t want to be spending it on (hello, bills) and not so often on things that I actually wanted. I was at a point where I really did want to at least try CGM for myself, hoping that it might offer me a little more convenience over having to prick my finger 15 times per day. I knew that there was an affordable option out there thanks to some very bright diabuddies and the Diabatteries Down Under community on Facebook.

I got myself set up on the Dexcom last month, which I wrote about in my last post here, and I was able to trust it pretty quickly. Within a few days, I quickly realised that I no longer had to worry about all of those imperfections that accompanied the Libre. It was just accurate 95% of the time. That definitely improved my attitude towards my blood sugars, because I wasn’t seeing so many false upward arrows or accentuated blood glucose readings.

The system requests two calibrations every twelve hours with a finger prick, and I would say that this is the most important piece of maintenance that the system asks of me. I learned the hard way not to over-calibrate my CGM, even if the reading was a little out from my meter. Quality over quantity wins out here. I think it’s important to calibrate with clean hands, and when my blood glucose is in range and not moving too much. For me, that’s first thing in the morning, and just before dinner. The system learns from each and every calibration, and a new calibration does not ‘replace’ your last one.

The sensors are technically only approved for seven day wear, but can simply be ‘restarted’ at the end of their life. I got 21 days out of my first sensor on my tummy with great accuracy. It was a good choice for a first placement, however it did tend to annoy me while I was sleeping and I can’t say I liked the sight of it there. Sensor number 2 is on my arm, and I love how out-of-the-way it is there so far.

The alerts don’t bother me too much, as I’m generally able to manage my blood glucose quite well. It is nice to have the alert wake me up if I go out of range at night, which enables me to correct it rather than wake up high and struggle to bring it down. The low alarm is also a nice reminder for me not to put off treating my low.

So far, I am absolutely loving the convenience that CGM offers. I acknowledge just how privileged I am to be saying that. It’s so nice to simply glance at my phone at any given moment to see what my blood sugar is doing. I appreciate this more than anything in the middle of the night, when I don’t have to haul myself up and prick my finger. It’s also nice to be able to leave the house for a short time with nothing more than my iPhone and glucose tabs. It definitely doesn’t feel as hard as it previously did to keep my blood glucose within my target range of 4 to 8 mmol.

On a final (and more personal) note, I just wanted to say a massive thank you to the Diabatteries Down Under community and the kindness of strangers that have helped make CGM much, much more affordable than I ever thought was possible.

So far, I couldn’t be happier to have taken this leap.