The Type 1 Traveller: Chapter 3

In Matt's Musings, Travelling with Type 1 diabetes
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Bima, West Sumbawa, Indonesia, several weeks ago.

I knew something was wrong as soon as the Indonesian hotel assistant handed me back my two cooler bags that they had been minding for me –  packed full of insulin and Thyroxin. The outside crackled and was frosted – meaning only one thing. She had frozen my year’s supply of insulin. (Insulin is meant to be stored between 2 – 8 degrees Celsius. Frozen insulin is either rendered useless or weakened to the point where you are not sure how much to take to control your sugar levels)

My heart sank and I panicked. I swore, I yelled at the kids to be quiet. I ripped the bags open and started frantically searching for signs of ice, cracking open a vile of Lantus and loading it up into the injection pen. A small wave of relief swept over me as insulin shot out of the pen. At least that one was not frozen. I looked at another and it was frozen solid. My mind was reeling with the realisation that I may have just found myself stranded in Indonesia, barely 3 months into our journey, with no insulin left.

After searching every vial it seems that she hadn’t actually placed it in the freezer but the poor quality of fridge meant that the top most part of the cooler bags froze while the rest hadn’t. So I gathered up the five or so frozen vials and stashed them away to ensure I didn’t get them mixed up with the rest. Nothing rattles your diabetic confidence like insulin that has stopped working. One day you are in control – the next day you are doing EXACTLY the same thing and your sugars are oscillating wildly.

And so the trials and tribulations of travelling with diabetes continue.

To be honest things have not been too bad at all. I recall reading another diabetics travelling blog and she mentioned that you need to let go of control and change your mindset about what is acceptable blood sugar levels. Such a simple statement but it was a beautiful release. When I got diabetes I was neurotic about my BSL. I would panic when it went below 4 and get angry with myself when it went above 10. The frustration and anger is what I recall the most. Angry that I had no control over my body. Angry that I hadn’t been able to manage my sugar levels better. Angry that I had eaten something wrong. To be honest I was also worried about what the doctor would say. That he would think I was failing and no good at self-preservation.

It seems to strange and childish but in those early times you seek out reassurance and confirmation so hungrily that you don’t want to disappoint your medical team. So when they would scan my sugar levels and question me I would feel this strange mix of guilt and chastisement. Like I had let them down. Like I was no good at this diabetes thing.

But slowly I have eased out of that mindset. Especially the anger and frustration. If there is anything more futile than getting angry at a disease? Nothing changes, nothing is improved, not a single thing happens except that you end up feeling emotionally exhausted. Maybe it has been the years of my father’s calming “doctors voice” over the phone when I call up confused and frustrated. First he would often (unhelpfully) say “well, sometimes these things happen to diabetics” and then he would pick me up off the floor: “But you are in control. Test your sugars as often as you want. Take some insulin. You are in control.”

Finally I listened to him and started to feel comfortable reacting to whatever was going on in my body. Less anger, more action. Which helped the other day no end. A few weeks ago I left Mel and the girls on this beautiful little Indonesian island that you can walk around in 30 minutes. I headed out to one of the world’s best waves – Desert Point in Lombok. One hour of windy roads and goat tracks to get to this isolated wave that breaks for hundreds of metres down a live, very shallow and very sharp coral reef. There are other surfers out there but if something goes wrong it is a long way back home.

So I planned it out. Dropped my breakfast insulin so I wouldn’t hypo, loaded up with snacks for the road and snacks that I carry out in the water in my boardshort pockets. Got my lunch, water, insulin, glucose monitor. My sugars were 21 before I paddled out to the surf (for non diabetics a normal blood glucose level is between 4 and 8mmol). Excessively high – but no problems I will surf that off. After the surf I checked again and I was 26. Now even for a diabetic that is off the charts. I haven’t hit that level since I was diagnosed. Nothing made sense, nothing seemed right and there I am in the middle of nowhere all alone. I did my calculations and loaded up with more insulin to get my sugars down. By the time I had walked out and driven back to our little losmen I was bottoming out with sugars of 2.0

So if by some random chance my endocrinology professor is reading this – yes, you read right. That’s a blood sugar range in one day from 2.0 through to 26.

But that one thing I read about letting go of control while travelling is sitting with me and easing the whole journey. Travelling through Asia eating rice and noodles means that your sugars will always go high. I don’t know WHAT they put in their banana pancakes over here but I have raised my insulin levels for breakfast and not eaten a thing until 2pm and my sugars have been fine. Everything remotely bread like is white flour and sweetened.

Having slightly higher than perfect sugars for a year or so will not damage me irreversibly. I have the rest of my much easier, manageable first world diabetic’s life ahead of me. That simple place where I eat my 3 Weetbix, have my one coffee, my wholegrain home made biscuits and multigrain bread. Where I can run around the block if my sugars are high and grab a cool fruit juice from the fridge if my sugars are low. But that is over a year away. Right now I am sitting in a bamboo hut writing this by the glow of the keyboard. My year’s supply of insulin is in a different little hotel down the road that actually has a fridge. My hypo kit is full of strange Indonesian snack bars and I am hoping that I calculated my insulin correctly for the noodle dinner we just had at the roadside stall.

But I’m here. I’m doing it and the reality of managing the diabetes here is not half as scary as it seemed before I left.

…….

Some helpful ideas for diabetics wanting to travel through Asia.

  • ž I have found that my opened, current insulin pens have travelled really well. I have been through 3 or 4 vial changes and no opened insulin has gone off in the heat.
  • ž  I am carrying cooler bags with ice packs in them. This is to get through the travel days. When we are in the one spot I hand the insulin to the hotel staff and get then to put it in the fridge.
  • ž  Every hotel, losmen or even beach bungalow has a fridge to store your insulin in. We are travelling cheap so there are no in-room bar fridges – but the staff store them in the kitchen. If you are travelling on a higher budget then every hotel will have a bar fridge so that is even easier.
  • ž  When we are on the move I have a complete diabetic “kit” – Glucose monitor, insulin, fruit juice, muesli bars. I also have an emergency meal of oats, powdered milk and granola. If something foes REALLY wrong (accident, emergency, multiple days with lost luggage and no money) then I am fine for a week or so.
  • ž  My wife has a complete diabetic “kit” in her day pack – Glucose monitor, insulin pens (short and long acting) and a stash of food. I can’t tell you how nice it feels when you are crossing a border, surrounded by hot sweaty crowds of pushy locals as you feel your sugars dropping…..and Mel just hands me a muesli bar.
  • ž  I have learnt the Indonesian for diabetic, drugs, fridge and freezer which helps. Everyone has been incredibly helpful and not battered an eye when I ask them to store my cooler packs.
  • ž  I am also carrying two of those FRIO evaporative cooler bags full of insulin. Every time I check it is seems really cool inside. This is in case something goes wrong on the travel days and for some reason I don’t get my insulin to a fridge quick enough. There is enough insulin there to last me a month or two. That is more than enough time to sort it all out at a local hospital and get supplies.
  • ž  They LOVE their lollies in Asia, so the choice for hypo sugar supplies is endless. Menthos are my choice.
  • ž  Sweet biscuits are plentiful and abundant so it is incredibly easy to carry emergency meals for long buses, ferries and trains. There are some great wholemeal digestives in Indonesia that are low in sugar, with nice carb content and they taste really nice. The best is the “Sari BisKuit Gandum” by Roma biscuit company.
  • ž  Rice and noodles send your sugars HIGH!!
  • ž  Banana pancakes and the standard Indonesian white bread must have a crazy sugar content as they also send me through the roof.

8 Comments

  1. Matt, good Blog. Thanks for doing it after the emergency. Like when you guys used to tell us of your near misses surfing driving etc AFTER the event. Travel safely and joyfully.
    M

  2. Hi Matt, So generous of you to share your scary diabetic experiences. Managing stress is very important, eh?

  3. Wow, frozen insulin and potential over-heating while traveling soon after — you never know in unknown places, especially where keeping meds on hand isn’t common knowledge. I haven’t had many of these experiences myself, especially not for long stretches of time, but have heard some of my D-peeps who’ve traveled on mission trips to developing nations say the same — it’s really a change in mindset about what you need and don’t need to do and stepping outside your normal D-routine. Glad it has been working out (or was as of mid-October!), and hope the same continues without any serious issues. If so, there’s probably any number of people in the D-Community who can help connect you quickly with someone in a particular area. Thanks for sharing all of these great posts and experiences (D and otherwise), Matt. Very much enjoying them and they’re great thought-provoking, insightful perspectives.

  4. Hi Matt – I just found your blog via Diabetes Mine and have been digging through your Type 1 posts. I, too, am planning some long term travel. I’m leaving for a year with my new husband to South America, SE Asia and S Africa.

    One question for you — how are you planning to store ALL the needles necessary for a year of travel? That seems overwhelming in volume…?

    • Hi Laura
      I did some rough calculations on needle usage (4 a day at home) and only multiplied for a year not 18 months. I then took that down a little by using them twice (I know…naughty and risks those unsightly bruises but so far has been completely fine). So that cuts it in half. I figured that the insulin was the hardest thing to get hold of in quantities – but the world is full of diabetics so there MUST be supplies wherever I go. Besides really remote places I have seen diabetic supplies in most cities. But you are right….there were quite a few boxes that I stuffed into small compression sacks.
      Hope this helps.
      Matt

      • Interesting. I haven’t thought about using the needles twice. It makes a lot of sense though. It’s funny – I reuse lancets again and again, but for some reason don’t feel good about reusing needles. I’m going to ask my doctor at my next check in, before her trip, about her take on this.

        I agree that there must be supplies worldwide – if you have any experience having to acquire insulin or other supplies while traveling, I’d love to read about them! Great blog! Thanks for info.

        • Hi Laura
          I have been reusing needles for several months and only occasional bruises if I forget how many uses I have had and over use them. Can see any medical risk to reusing beyond the bruising. Risk of infection would be pretty low. I have seen those microscope images of reused needles though….too many uses and they actually look like fishhooks! If it’s any reassurance my dad (a physician) also reuses but as they often say doctors sometimes don’t take the best care of themselves! Plumber and the leaky taps…
          But for me on the trip nothing adverse has happenend.
          Matt

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