So it has now been over 365 days on the road. While I have already written about the journey anniversary and what it meant for all of us – there was another profound aspect of it that was more personal. The one year anniversary meant that I had survived one year on the road with diabetes. Away from all the routines, safety mechanisms and on-tap medical support that I had grown accustomed to and was fearful of leaving.
I have pondered it all and written what has been on my mind in previous posts but something about the one year brought it all home again. It made me reflect on all the fear that was swirling around my head before we left and how that fear has slowly subsided with every kilometre we moved away from home.
The greatest diabetic concern I had in the lead up to that ages-past, other worldly act of leaving Australian soil for Timor was, of course, keeping the insulin safe. While I knew that logically there MUST be insulin in every country in the world I had no idea how I would procure it if needed. But I also knew that (unbelievably in this day and age) there are countries so riddled with corruption and/or civil strife that insulin is unavailable in remote or isolated areas. It’s a global disease with simple, manageable fixes, but people still die from it.
Outside of those regions (which I was pretty sure we weren’t passing through) there was always the threat of some local disaster or emergency where insulin would not be available due to unforeseeable circumstances. Pre-diabetes I had travelled through regions of Indonesia that had subsequently been hit by tsunamis and I could imagine the days or weeks of chaos before anything remotely close to help or medical supplies arrived.
So it all came down to the fact that I would have to be completely self sufficient. While we have passed through the more remote or developing countries now, the sheer cost of buying diabetic supplies (without a generous government subsidy) further reinforces the importance of this.
You just need to go it alone and have everything ready.
So we set up our systems for keeping my insulin (and Thyroxin) safe and well for the journey. As I have described we had the doses dived up, we had different storage and cooling devices and we had different emergency packs that were strategically placed in day packs, split between Mel and myself. So almost every scenario was covered. Mel and I being separated, me losing my large backpack, me being separated from everyone and us being stuck somewhere with no access to medication for a period of up to 6 weeks. I even had my “Tsunami kit” in my daypack. A supply of sugary sweets, muesli bars and a small bag of oats in case we were literally stuck in the middle of the jungle with nothing and no recourse for rescue for a week or so.
I don’t even know where that “Tsumani kit” is now. I haven’t looked at it for months, where through Asia I was checking its contents every few days. I am back to my home routines – lazily restocking my sweets and muesli bars when we shop, and casually checking on the insulin to make sure it is still sitting in ice in the esky.
But it has been stressful. Immensely stressful at times. The two insulin freezing events, forgetting my whole years supply back on the road in Australia and recently as we shifted to car camping simply forgetting about the insulin all together. Suddenly realising with panic as I open the esky that the ice had melted days ago and I had no idea how long the insulin had been sitting in lukewarm water for in the back of the car. I even made the amateur mistake of leaving my Frio cool packs on the dashboard in the sun. Coming back to the car a day or so later and seeing these dehydrated withered cool packs in full sunlight with my precious insulin heating up inside.
It was laziness and a lack of focus – but it also reminded me of how much more comfortable I was. How the fear had subsided. And of course how confident I would be back home to leave routines and head out into the woods with my insulin safe and sound. I look back to our first multi day hike post diabetes and my concern about keeping my insulin safe for three days in a backpack seems sort of quaint and funny.
But beyond helping my confidence it has given me the first hand experience of just how robust insulin is and that knowledge is invaluable. All diabetics know that the rule book is pretty loose and that even first grade medical advice doesn’t always help your personal case. The worlds top diabetic researchers probably haven’t done a tightly controlled research study on how long insulin can survive outside a fridge travelling through South East Asia. Yes there are guidelines about optimal temperature and storage environment but the sheer number of possible environmental situations are too innumerable to even consider measuring and testing. So as a diabetic you approach anything other than the “perfect” insulin storage environment with trepidation and concern. No one can give you advice for your situation – you need to discover it the hard way (or you read other diabetic blogs and learn from them discovering it the hard way).
So I have done my own field testing – and the results are pretty damn good. Insulin can survive for 365 days, outside a consistently refrigerated environment, being frozen, sitting in Indonesian buses, being in cars in tropical heat, being kept warm as the temperature drops to minus 20 Celsius and swimming around in esky juice with ham and soggy cheese – without ice. Although I wouldn’t try all of theses at once.
It is completely possible to cross the world with a years supply of insulin tucked in your backpack.
As I have described in the more “hints and tips” section of this blog, there are some critical observations. The most important is the difference in robustness of Lantus and Novo Rapide. I had read about variable durability of different insulins – but my endocrinology professor dismissed this or at least had not heard anything about it. Now I know this is no meticulously managed and controlled medical study but without a shadow of doubt I would say that Lantus is far less resilient than Novo Rapide. The Lantus and Rapide have been stored side by side in the same box in identical environments and so far I have replaced ONE Novo Rapide vial due to it not working – and at last count I have thrown out between 8 – 10 Lantus vials. Every time I suspect the Lantus is bad (due to inexplicable BSL variations) and I replace the vial my sugars have returned to normal the next day and stayed at what is normal for me.
The other observation that I have had of late is that it seems that the well travelled and “abused” Lantus doesn’t seem to survive in my current active insulin pen (outside the cool environment) for as long as normal back more. Back at home with a fresh vial I could safely use it until the vial was completely empty. Out here the Lantus seems to stop working about 2/3 of the way through a vial. This has happened with the last 3-4 times I have had to dispose of the vial. Everything seems fine, then near the 2/3 used mark my sugars start to rise for no reason and stay elevated overnight. Changing the vial results in an instant overnight readjustment. Meanwhile the Novo Rapide can be safely used until the vial is completely empty.
So I have 5 months to go until I touch back down on Australian soil. Five months until I head to the local chemist and refill my nice, perfectly climate controlled fridge with fresh insulin. Five months until I can empty my little box of battered and beaten insulin vials still sitting in their water logged cardboard boxes that disintegrate when I pick them up. Five months until I can use a fresh needle every injection. Five months until I can pretty much forget about the variable of bad insulin as a cause of wild or erratic sugar levels (and blame some frustrated dietary outburst). Five months until insulin management can be cast into the back of my mind as one less annoying, head filling variable of diabetes.
But then I have a lifetime of NOT being afraid anymore. Of packing my insulin for a multi-day wilderness hike thinking: