Yesterday was so awful that I feel the need to get it off my chest, before I catch you up on Our Most Eventful Week Ever (capital letters intended).
It was without doubt the worst diabetic day I’ve had since I came out of hospital post-diagnosis.
Before I begin, let me explain some numbers, so that what I say makes sense to you:
Non-diabetics (normal people) have blood sugar between 4 and 7. Diabetics should always aim for below 10 – 7 is the magic number, but I’m happy anytime I test in the 8s too. Between 10 and 12 is high, over 12 is really high, over 16 is dangerously high and I start panicking. I’m hardly ever over 16 – it means something has gone very wrong (i.e. my insulin isn’t working).
Yesterday, Thursday the 10th of December, promised to be a somewhat challenging day before it began. We woke up in Cemoro Lawang, the mountainous village not far from Gunung Bromo, the most famous volcano in Java, Indonesia. The plan was that at 9am we would catch a public minibus down the mountain to Probolinggo (1 hour), then catch a train to Banyuwangi (5 and a half hours), then catch a ferry to the port of Denpasar (45 minutes), a bus to Denpasar city (3 and a half hours), and a taxi to Sanur (20 minutes), where we would finally be in Bali and wouldn’t move for 5 days. That’s what was keeping me going: the thought of staying put for a few days. I’ve had a cold all week, so my blood sugar has been slightly high the last few days (I blamed it on infection and simply took more insulin). All in all, though, I was feeling strong.
Everything went smoothly till I tested my sugar two hours after breakfast (we’d just boarded the train) and found it was 15.9 – crazy high considering I’d taken slightly more insulin than usual at breakfast, because of my cold. I thought maybe I was going high because it was so hot (SO hot, like sitting in a humid oven, and we’d been waiting on the platform for an hour) and took another 3 units of insulin, which would definitely take me down to below 10. So far, not too worried.
Two hours later, I tested to see if the insulin had worked (you have to wait 2 hours for it to get into your system).
It hadn’t. I was still really high – 13.4.
So I deduced that the heat had killed my insulin, and took a fresh pen from the cool pack in my backpack. Not too worried. Fresh insulin would sort me out in 2 hours. I had a small lunch, took a generous injection, and waited.
2 hours is a long time to wait when you’re not feeling too well and not sure what your blood sugar is going to do.
When I tested at 3.45pm my blood sugar was 18. The highest it’s been since I came out of hospital over two years ago and figured out carbohydrate counting. The 2nd pen had obviously also been heat damaged, and wasn’t working at all.
And this, dear friends, is when I freaked out. Because if an insulin pen that was in my cool pack wasn’t working, that means that all the insulin pens in my cool pack might not be working. I’ve been as careful as possible with my insulin, but as you know it was left out of the fridge for 2 days last month, and most of the places we’ve been staying in lately haven’t had fridges, so it’s been going in a communal fridge. The weather is so hot here that to take it in and out of the fridge probably doesn’t help, and I’d come to terms with the fact that it wasn’t as effective as fresh insulin. But if it wasn’t working at all that was dangerous. Really dangerous.
We were only due to arrive in Sanur after 10pm. If the next insulin pen didn’t work I wouldn’t be able to eat anything until we could find a hospital or emergency room that could sell me insulin. We’d have to buy insulin to last the next 3 weeks. Who knows if that wouldn’t get heat damaged too – Bali is having its hottest summer ever known.
But on top of all these fears racing around my head was one clear question: Were we idiots for trying to do this? Was 4 months too long to travel in sub-tropical climates with diabetes? Was I being really stupid and careless with my health? For the first time since we left home, I felt scared. I wanted to go home.
But of course I couldn’t. I had a ferry to catch. Two hours later, on board the ferry to Bali, I checked my blood sugar again, and Hallelujah, Praise Every God in Heaven, it was fine. Totally fine. So now I’ve found a magic insulin pen that still works perfectly. I need to test all my others so that I don’t have another yesterday happening to me again in a hurry.
When we finally arrived after 11pm last night, I was completely exhausted and hollowed out. I can handle travelling with a bad cold and stuffy head. I can handle a 14 hour journey. I can handle high blood sugar for 8 or 9 hours (although I’d rather not have to ever again, thank you very much). But a 14 hour journey with a bad cold and high blood sugar is too much for me. Being that high is so awful. I couldn’t stop crying, my head felt full of clouds, my body felt weird and hot, and there was no sense of balance in me, no rational thought to cling to. I honestly haven’t felt scared of being diabetic since I got my eating plan and got it under control over two years ago. Yesterday was the first time that I really felt the weight of my condition.
Poor Mark was wonderful. Calm and soothing and practical, figuring out how we could get to a doctor or a hospital as soon as we arrived, and not getting freaked out by my constant tears.
And now, today, I feel shaky. My blood sugar is fine and I’m eating really normal food to keep it that way. I’m going to test the other insulin pens over the next two days and chuck out anything that doesn’t work, so I’m pretty sure this won’t happen again. Yesterday, of all the days of this wonderful trip, is one day I would not want to repeat. Not for anything.
Yip, it had to happen. Two and a half months in, and although I’ve had disheartened days and sad days and bad diabetes days, I hadn’t had a freak out, till this morning.
Let me set the scene…
The last couple of days have been really interesting – we left the chaos and colour of Ho Chi Minh City on a late-night (11pm) overnight train to Danang, which was actually a lot of fun. We chose the soft-sleeper option, a four-bed sleeping compartment which we shared with two older American guys, who left at 5.30am so we had the whole cabin to ourselves for the rest of the day. Lovely! We could have flown for almost the same price, but we wanted to see some of the countryside, and I’m so glad we did…. It was stunning. Loads of rice paddies and local farmers and gorgeous scenery. I loved it (and just realised that I was so busy videoing it that I didn’t take any photos! How foolish of me). We arrived in Danang in the late afternoon, and headed to a beachside hostel that came highly recommended.
Not really our usual cup of tea – very basic accommodation and without doubt the hardest beds and worst water pressure we’ve had in any place so far – but we were won over by all the reviews of the lovely owners and the communal dinners. The dinners were fabulous, everyone heads down to the dining room and the family brings out big plates of food to share – incredible baby spring rolls, fresh grilled fish, tofu, a chicken dish, piles of vegetables, rice and noodles. YUM. What’s even better, though, is that because you’re all sitting at a communal table, it’s impossible not to start chatting, and make friends. It’s funny, most of the time I don’t really notice the absence of friends, but any time I do we meet some lovely people and make new ones – I suppose it’s one of the rhythms of travelling.
Anyway! To cut a long story short – we had a lovely two days in Danang, wandering around the town, swimming in the sea, and eating delicious communal dinners. Our room didn’t have a mini bar fridge (as most of our rooms do), so when we arrived I asked the lady at the front desk to put my bag of insulin in the fridge – and pointed at a fridge in the room. She nodded and said, “Fridge, yes, fridge, no problem,” then took my insulin off to another room – which they often do, to take it to a fridge with more space.
No problem! I thought, and sat down to dinner.
This morning, when we checked out, I asked for my insulin, and she went over to the safe, which was a cupboard, and took out the bag of insulin. So it had been sitting – unrefrigerated! – since we arrived two days before. Not only that, the room it was in wasn’t even air conditioned (as our bedroom was), so it had been sitting at room temperature or higher for two days.
I lost it. For two and a half months I’ve been carrying around this precious bag of medicine, making sure it’s kept safe and cold every time we stop anywhere, and now, because of a miscommunication and me believing that when a word was repeated back at me it meant that word was understood, it had all been put in jeopardy. I burst into tears, and it took me a loooong time to calm down.
I’m feeling better now, obviously, but I have yet to test out the insulin to find out if it’s okay… We’re about to go out for dinner now and I’m going to test it then. Please say many prayers to any god you know that it is, or I’m going to have to stock up from a doctor in town, and there goes any budget we have.
Ironically enough, yesterday was World Diabetes Day (we didn’t have internet, so I couldn’t blog), and this morning – before the drama – I was planning a blog post on why I’m grateful for diabetes. That will come soon, I promise!
… I get really sick of being diabetic. Today is one of those days, I’m afraid.
The last day or two I’ve had pretty crazy blood sugar – really high and really low, which is unusual for me. Yesterday, Border Crossing Day, was particularly bad. I was strangely high after breakfast, then strangely low a few hours later, low again before lunch and then high after lunch, despite having taken enough insulin. I couldn’t figure it out – I’d changed my short-acting (daytime) insulin a few days before, so I couldn’t blame that, and I was sure I was taking enough for the food I was eating. I actually started thinking I might have some kind of allergic reaction to crossing borders – that the stress of avoiding scams and waking up really early and figuring out a new country’s code of conduct made my blood sugar go haywire.
Not a particularly medically sound diagnosis but, you know…
It was only as I was lying on a garden lounger watching the sun set over the sea that I hit upon the answer. I think it was from watching a fishing boat bob in the waves – it made me think that my blood sugar readings didn’t seem to have an anchor, they were really up and really down. Anchoring blood sugar is the job not of your daytime (short-acting) insulin, but your nighttime (long-acting) insulin – the one I take every night before I go to bed. And that made me realise that although I’d changed my daytime pen a few days before, because it wasn’t working properly and had obviously been heat-damaged, I stupidly hadn’t changed my nighttime pen (extremely foolish, seeing as I carry them around in the same bag). D’oh!
But still , a solution! I went to dinner feeling rather pleased with myself, and made sure to take a fresh pen out of the cooler full of insulin I kept in the fridge.
And then.
I woke up this morning feeling like death-warmed-up. Exhausted, heavy and with flashing eyes, a sign that a migraine was just around the corner. It wasn’t a fully-fledged migraine, I must admit, but it was enough to send me back to bed, miserable, head pounding and feeling nauseous. Not a great first day in paradise!
I’ve just surfaced now, after 3pm, and I’m feeling somewhat human again, but pissed off at diabetes. I feel like it’s one of the only conditions that never gives you a break (this may be an emotional rather than a logical statement). If you work too hard and abuse your body, you’ll usually get a cold or flu or feel rundown, but if you catch it in time you’ll be fine. If you drink too much you’ll usually get a hangover, but sometimes you’ll be fine. But if you have a crazy blood sugar day, even if you figure out the problem and sleep 11 hours and do all you can to rectify it, it still punishes you with a bad health day the next day. I know, I know, you can’t look at it as punishment, but that’s what it feels like today. I want to say to my body: “Seriously, can you not give me one day off? Can the diabetes not take a back seat for one day? Please?’
But of course it can’t.
That’s the whole beauty of a chronic condition, it never takes a day off.
And just for today, I wish it were otherwise.
Tomorrow I’ll be chirpy and feeling well again, I’m sure. For today? I’m taking it reaaaallly easy. I think I’ll go for a stroll in the garden, check out some of the indigenous trees, and maybe take a dip in the ocean. Restore my perspective a little. Sounds good, doesn’t it?
PS – It’s a few hours later, and my blood sugar has stabilized, so I feel like myself again. I’ve also remembered that a side-effect of high blood sugar is that it makes me irritable… Something to bear in mind next time I’m blogging on a high!
… is really the message that we want to send with this journey.
That no matter what your chronic condition, you can take heart in knowing that it is possible to follow your dreams, just like I’m doing with my diabetes and our travels.
Part of our Take Heart Campaign is finding handmade hearts in each of the countries we visit, which we’ll auction off to raise funds for the Juvenile Diabetes Research Foundation, who are searching for a cure for diabetes.
