Ten Years - Eternal Sunshine of the Diabetic Mind

Yesterday was my ten year anniversary of being diagnosed with type one diabetes. I remember parts of that day well: my sister drove me into Royal Melbourne Hospital early, and we sat in the cold darkened corridors of 3N waiting for a nurse to arrive for work. I was busting to go to the toilet again, but was thinking a lot about recent discussions with my sister-in-law, also a nurse, who had confirmed that my blood glucose results from a recent blood test were abnormal, and that I wouldn’t want it to be any higher (13.6m/mol, or 245mg/dL). As a result, I had made sure not to eat breakfast that morning in case it would elevate my blood sugars again and cause more problems.

When Diabetes Educator Sue North finally arrived, it wasn’t long before we were facing a spot blood glucose check: 17.1 (308). I remember swearing in a polite fashion, and Sue asking me why I had responded like that. ‘Because its not supposed to be that high!’ I replied. I had no idea what it was supposed to be, just lower than 13.6. My escape clause – ‘oops! We stuffed up your original blood test! Sorry!’ – had suddenly vanished. Dread was now starting to creep in. Insert another expletive. Seek air. Seek a drink too – boy, am I thirsty.

‘Do you know any other diabetics?’ Sue had asked me. I racked my brain. No, not really. My thoughts went back to a school holiday camp in the Alpine National Park, where there was a type one in attendance. Boy was she a pain in the arse. Always sooking about having to take time out from our work activities to test her blood, and then sucking on condensed milk when something was wrong or something. At the time I thought it was just an excuse to eat sweet stuff.

Other things have faded from that first day: I remember Sue taking lots of notes for me to bring home and digest over, but can’t recall what they contained. I can’t really remember what the endocrinologist who confirmed my diagnosis looked like (apart from having dark hair and glasses). And although I can remember approaching the payphone with more dread and a lumpy throat, I can’t recall what I said when I made that phone call to my parents to tell them I had just been diagnosed with type one diabetes.

In thinking about my ten year anniversary recently, I recalled another snippet of information Sue had given me which had slipped from my memory. She made mention of a person who was also pretty active with type one diabetes, and that she was still looking after herself and ‘in control’ despite having diabetes for ten years! I remember being bewildered by her expression and intonation: why would this story seem remarkable to her? Doesn’t Sue deal with diabetics all the time? Why would ten years of good control be so unusual enough to make mention of it?

Ten years of diabetes and a lot has changed for me. After six years of injections with the same insulin recipes, I moved onto a pump in order to give myself the best chance I could at competing against normal people. Last year, after nine years, I moved onto a cordless pump system to refine the benefits even further. Although there has been a lot of technological advances in testing devices, I have pretty much consistently used three meters over the ten years: seven or eight with the Bayer Esprit device, patiently waiting the 28 seconds for a reading, followed by the ‘stay awake’ and unlit Accu-Chek Integra, famous for its ridiculous noise. These days, regardless of the company, it takes just five seconds for a blood glucose test – mine with Abbott’s Papillon – or 0.1 seconds to check my Abbott Navigator, which updates my readings every minute, predicts highs and lows, and graphs recent trends.

I’ve been in the wars too: hospitalised for Diabetic Ketoacidosis (DKA), ambulance for lows (x3), seizures on my own, at my desk, riding my bike, and most scarily, while asleep.

I have travelled to new countries without any replacement insulin. I’ve also run out of insulin in the same country, and unsuccessfully tried to source a replacement via the local hospital and every single pharmacy in the capital city. I have broken meters in Canada, run out of test strips in Eastern Europe, cooked my insulin from leaving it in the car, had pumps fail on me during stage races, left my insulin at home, left my testing gear at home, left my needles at home, left my insulin at work when travelling out to a site visit for the day (discovering after I had eaten lunch and needed to inject), and most recently, didn’t bring enough replacement gear (or needle tip) when visiting the farm two weeks ago!

I am now that annoying person who constantly talks about diabetes, although admittedly, it is from answering questions moreso that releasing information to anyone that listens. This year alone I have presented four times about my experiences with type one diabetes. I don’t carry condensed milk with me, but have a thing for Australian lollies and am well supported through my personal sponsorship with The Nut Bloke. And I now know that being ‘in control’ is a ridiculous term for a condition that has no real means for constant manual control. Yes, I go low. And I go high. And if I get a reading of 17.1, I’ll still swear.

I’ve been lucky that despite ten years, the damage has been fairly minimal. My recent eye examination noted, ‘no evidence of diabetes’. My HbA1c is constantly good, I have feeling in my feet, my blood pressure’s low and no evidence of kidney impacts despite the kidney scare late last year.

I’ve learnt that despite all the letters after their names, in general docs don’t know all that much about diabetes. My fiancé learnt this the other day, saying in disbelief, ‘I don’t know how you put up with that!’ in response to a Registrar lecturing me with 1970s diabetes management practices he thought I should have been using.

I’ve also learnt the general public really doesn’t know much about diabetes. Other than I ate too many lollies as a kid. But it seems to be changing: people don’t have any problem whatsoever asking me what are on my arms, and when I explain, most seem to not raise an eyebrow at the concept of an insulin pump – only that they have never seen one looking like that.

I’ve also met people with diabetes. Initially, the skies cleared and the heavens sang when I found out about a group called Reality Check, set up for young people with diabetes. Six years ago I helped form a group for type ones interested in exercise, which morphed into HypoActive. In 2006 I discovered a group of cyclists with type one who race, based in the US. This year I will return for my second season racing with Team Type 1, spending over four months in the US. In 2006 I also made contact with a group called Diabetes Exercise and Sport Association (DESA), which have opened up far more doors for me internationally, reminding me of the common bond and constant challenge we all face across the globe.

I guess I have done a lot in this time and achieved much, as a person, and as a person with type one diabetes. Sometimes I wonder how this last decade would have been different without diabetes. But when I do this, all I think of is a big black void of memories that exclude anything with diabetes. I just end up with ten years of nothing. And whats the point of trying to think of a life, or even of living a life, without diabetes anyway? I got it. Don’t care how, and don’t care why. Here’s hoping for a few more diabetic decades and achievements to come. Eternal sunshine of the diabetic mind.