Diabetes Musings

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.

I’ve never pricked my finger without washing my hands first.

I’ve never swapped an infusion site without rubbing an alcohol wipe over dry skin first.

I’ve never thrown a syringe in the bin because a sharps container couldn’t be found.

I’ve never left an infusion site on my stomach for longer than three days.

I’ve never pushed a pen needle beneath my skin more than just the once.

I’ve never seen a purple bruise from injecting into the same spot.

I’ve never had more than two hypos in a single week.

I’ve never treated a low blood sugar with chocolate, biscuits or cake.

I’ve never given more insulin than what my bolus calculator suggested.

I’ve never worn a sensor on my arm, or Libre on my leg.

I’ve never refilled a cartridge that’s already been used.

I’ve never filled my reservoir with more than three days of insulin that I would use.

I’ve never left the house before without my backup gear.

I’ve never forgotten to write down in my logbook a single blood glucose reading.

I’ve never walked off to the bathroom to test or give myself an injection.

I’ve never attempted to minimise the impact of diabetes when talking to family and friends.

I’ve never lied to a healthcare professional, for fear of their reaction.

I’ve never trusted another person with diabetes, especially those I know from the internet.

I’ve never failed to correct an ignorant diabetes comment.

I’ve never used diabetes as an excuse to get out of something I didn’t want to be doing.

I’ve never for a minute doubted that diabetes might be able to stop me.

I’ve never wavered in my faith of a cure being just five more years away.

I walked away from my third Diabetes Congress last month thinking about how damn bright the future of diabetes treatments are looking. That’s not something that I could have said so easily 24 months ago. I can’t go any further before acknowledging my privilege in being able to feel this way. Today we have new pump choices, competition on the horizon for CGM, interconnected smart pens, nasal glucagon and hybrid closed loop systems (both commercial and DIY) to name a few.

Continuous Glucose Monitoring is something that I never, ever, ever thought would be an option for me. The system is extremely expensive to use, and unfortunately I don’t qualify for any government subsidies here in Australia. But the more I thought about that bright future, the more I knew that at least trying a CGM would undoubtedly give me more options.

Thanks to Diabatteries Down Under, a community on Facebook that is helping to facilitate cheaper CGM access here in Australia, I am now up and running on the Dexcom G5 system. (If you’d like to learn more about cheaper CGM, you can join the group on Facebook). The Dexcom consists of a sensor that sits just underneath the skin on my stomach, measuring my blood sugar every five minutes. A transmitter sits on top of the sensor, and sends my blood glucose data straight to my iPhone.

Like every new piece of diabetes toolkit, the Dexcom was definitely a learning curve. I’m glad that I chose a quiet weekend where I had the time and patience to get it all set up, and equally I’m glad that I’m over the hump.

It did take me a few days to trust the accuracy of the device. The system requires one calibration every 12 hours with a finger prick. One lesson I learned the hard way was that my over-calibrating did more damage to the accuracy of my CGM. My understanding is that the system’s accuracy is formed from each and every calibration, and not just the most recent one. More calibrations do not equal greater accuracy. After I stopped and restarted my sensor on day 3, the accuracy was superb.

Another big mistake I made was integrating the CGM with my t:slim in addition to my phone while this was so new to me. With every alert, I had two devices needing my attention. Suddenly my pump had come alive with beeps and alerts, and given the nature of our attachment, it was clear that this was the one that had to go. A shutdown and restart of the pump thankfully restored my t:slim to the pump I know and love.

I’m loving the novelty of being able to see my blood glucose readings from a glance at my phone. I’m pretty lucky to come into this in a position where I already manage my blood sugars quite well that the system’s alerts don’t bother me too much. After three years of intermittently using FreeStyle Libre, I’m also confident that I feel comfortable with the continuous stream of data.

This is still very much an experiment. I’ll be looking to see how feasible this system will be to run in the long term, how much benefit I’ll be able to reap from it and of course how much I like using it. Stay tuned.