I Never

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.

Keeping My Options Open

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.

Hypo Hunger

I could feel it coming on as I approached the front of my house, failing to steer the car closer to the kerb as I usually do to reverse onto the driveway.

‘I’m going low again,’ I thought to myself as I pulled myself out of the car and locked it behind me. I’d already pre-emptively treated with two glucose tabs around an hour ago, but I knew that my blood sugars weren’t quite able to hold on.

I knew that the sensible thing to do would be to open my bag and pop another two glucose tablets into my mouth. But I wasn’t thinking clearly. I guess it didn’t help my case that I was already feeling a little depleted after an extremely busy day at work and in need of some fuel.

I got dressed as quickly as I could and prepared my usual milky afternoon coffee. I gulped it down, rather than savouring it, almost as though I was using it to quench a thirst that I didn’t know was there. I opened up the cupboard and grabbed an Arnott’s Royal from the biscuit container. I pulled my pump out of my pocket, registering the low blood sugar and entered the carbs that I’d eaten so far.

But it still wasn’t enough.

I opened the cupboard once again, this time eyeing an already opened packet of Honey Soy Chicken crisps. Normally, crisps aren’t something that I indulge in. After years of eating them after school, I miraculously managed to evolve this habit into an afternoon coffee. Which is excellent, considering how terrible they were on evening blood sugars.

But today I opened them, with the intent of just eating a few. Just enough for a taste, without the need for a bolus. But the more I ate, the harder it was to stop. I must have had a few decent handfuls, at the very least. All the while, blissfully unaware of the realisation that I’d need to bolus.

Safe to say, my poorly timed boluses weren’t able to catch up to my rising blood sugar for quite some time. I probably spent a decent few hours attempting to repair the damage I’d done.

Most days, I can fix hypo with nothing more than a few tabs of glucose.

But on those days where hypos and exhaustion collide, I’m compelled to raid everything but the kitchen sink.

Fear of Lows?

I’ll be the first person to put my hand up and say that I don’t like having lows. I mean, who does? It’s not fun having to push through a work day while chewing down glucose tabs that taste absolutely revolting after years of treating my hypos with exactly the same thing. It’s not fun waking up in the middle of the night drenched in sweat, pulse racing and feeling scared out of my wits. It’s not fun thinking about the potential of developing hypo unawareness, and I absolutely hope that I’m doing enough to minimise its impact on my brain.

But for the most part, these are all relatively isolated occurrences. Lows genuinely don’t concern me. Perhaps that statement comes from a position of privilege. I am lucky enough to have access to and motivation to use great blood glucose monitoring equipment. I have never experienced a hypo where I’ve required assistance, and I feel that I still have reasonable hypo awareness. While hypos may be a part of living with diabetes, they definitely don’t dominate the agenda of my diabetes.

A low can be quickly fixed, and in most cases, pre-emptively treated with the glucose tabs that I always have on me. But in some ways, I know that it won’t be that easy to fix some of the longer term conditions that may arise as a consequence of living with diabetes. So if I am being completely honest here, I am far more concerned about the impact of the higher blood sugar levels on my body than the lows.

I think that’s why, time and time again, I find it so difficult to cope with healthcare professionals’ extraordinary concern around lows. I was somewhat reminded of this last week as I was listening to a local endo talk about hypoglycaemia in her practice.

I don’t mean to say that I don’t appreciate these concerns, or that hypoglycaemia isn’t something to be concerned about. Because there’s definitely a correlation between hypoglycaemia and quality of life. Yet when I see such extraordinary concern around lows, I simply feel that healthcare professionals don’t get that highs aren’t exactly ideal either.

I’m left to manage diabetes on my own for the other 364 days of the year that I’m away from diabetes clinic. I have to make hundreds of decisions each week on my own just to keep my head above water. I feel that sometimes they don’t get just how much of a personal stake is involved in these decisions.

After almost a decade of living with diabetes, lows don’t feel extraordinary. They’re pretty ordinary.

Reintroduction.

I take absolutely no credit for this idea. But I have seen it going through Instagram, and I thought it might be a good time to re-introduce myself to those of you who might be new around here.

I’m Frank. I’m from Perth in Western Australia, and I’ve lived with type 1 diabetes for the past nine years. I presented to my GP with all four ‘Ts’ of type 1 diabetes – tired, toilet, thirsty and thinner – but wound up in emergency a few days later with DKA.

The hardest thing about being diagnosed at that age was trying to find a place for diabetes in my life. I lived in relative isolation for those first couple of years. I kept diabetes to myself as much as I could, and didn’t really feel motivated to learn more about it.

My turning point came in 2015 when I created a Twitter account and accidentally stumbled across the Diabetes Online Community. For the first time in my life, I saw other people candidly sharing and talking about diabetes in a normal light. I’ve also been lucky enough for the opportunity to turn many of those online friendships into in-real-life ones over the past couple of years.

Peer support is my vice. I could talk for hours and hours on end about how valuable and life changing diabetes peer support is. It definitely played a big part in better engaging myself in my diabetes management. I’m also incredibly proud to be part of a Young Adult Diabetes Committee here in Perth, because this incredibly bright group and their mission definitely fulfils what the diabetes community has done for me over the past few years.

I’m currently using a t:slim insulin pump, and it’s honestly been everything that I’ve wanted in a pump for a long time. I monitor my blood sugars with an AccuChek Guide, and intermittently use a FreeStyle Libre. I don’t really follow any particular kind of diet. I eat to meet my energy expenditure, prepare as much of my food at home and focus on ‘real’ food. I’m always on the hunt for good coffee and cakes or pastries. Especially Cannoli.

Diabetes is hard work. If there’s one thing that I could draw upon from my own experience, it would be to monitor your blood sugar as closely as possible and commit to learning about how it responds to different variables and activities. Arm yourself with as much information as you can about managing diabetes, and find what works best for you. (I personally can’t speak highly enough of Think Like a Pancreas by Gary Scheiner).

I currently work as a back of house attendant for a retail business. I honestly cannot wait for the day where I’m not on my feet all day burning energy, and I might actually feel motivated to complete some feat of physical endurance. I’m currently studying Accounting at Curtin University. I really hope that I’ll be able to use that degree to make my mark on the world somehow in the future (and earn a bit more money to pay for my health care).

I love being outdoors, and recently ticked the incredible Blue Mountains off my bucket list.

I prefer TV shows over movies. If you haven’t picked up on the references scattered throughout this blog of late, I’m absolutely hooked on Australian Survivor at the moment. Also looking forward to the Downton Abbey movie and season 3 of The Crown.

If you’re new here, or if you’ve been reading my blog for a while, I just wanted to say thank you. Whether its been through a comment, social media interaction or a real life friendship, the diabetes community continues to make the great big world around me much much smaller.