Backpacking with diabetes (part 1).

Most of you already know I am an outdoors kind of girl. So no big surprise when I tell you I love backpacking. Either to explore the great outdoors or taking my pack for a trip through an exotic country.

It may surprise you that I never backpacked without diabetes! Born and raised a farm daughter, traveling was never high on the agenda with my parents. I did the odd summer holiday with my mum, but these were more the ‘standard’ trips to a cheap resort at a sunny destination.

I met Pieter about two weeks before the start of what I call ‘my diabetes journey’. My actual diagnosis with MODY took another 6 months. Yet, he never wavered and has been my biggest supporter ever since.

We shared a love for nature and being active and he, being used to a bit more adventurous trips, asked me to go on a backpacking/hiking/camping trip to Scotland with him over the next summer (2014). I immediately said yes! This sounded exciting and I was yearning to explore the outdoors in a different way than I had before. I knew nothing about what to pack or how to pitch a tent, yet I felt confident he would know exactly what to do. And he did.

It never crossed my mind diabetes would be such a pain during this trip. I had been put on oral medications and had experienced some lows, but nothing too bad at that point. I only needed to bring a blood sugar test kit and a strip of meds. Easy! Or so I thought. Nowadays I bring a spare meter etc. in case my regular one dies. Being so new to it all, it didn’t occur to me this could even happen! So off we went to what would turn out an amazing experience with the worst lows I’ve had in my life!

After a few days of hiking the Murray coast trail, I started to go low almost immediately after every meal. Looking back, that was most likely due to the sulphanylureas I was on at the time. They signal the pancreas to produce a burst of insulin, independent of food/activity. It just keeps pushing insulin into my blood stream. The active days made my body more sensitive to insulin, hence my blood sugars would go crashing down.

(Yes, in the beginning of my MODY diagnosis my pancreas was still able to produce a bit of insulin. It just didn’t do so in response to carbs/higher sugar levels in my blood stream. Nowadays I don’t produce insulin myself anymore and need injections.)

I was eating constantly to try and keep my sugars up and spent many (half) hours waiting to recover from yet another low. Pieter was an amazing companion. He never complained, carried most of the food, helped me test my blood sugars when my hands were shaking too much, … He made me feel safe and this way I can still say I enjoyed that first backpacking trip very much.

For me, this trip set in motion a couple of things:

  • I was determined to go out and explore much more!

  • I started to look into mechanisms of blood sugar control and how my gene defect and medication influenced this. Knowledge is power!

  • I realized I needed more preparations and strategies to go about these trips safely.

To be honest with you, I didn’t realize at the time how wrong that first trip could have gone. It didn’t occur to me that people could loose consciousness or even die from low blood sugar. And even though we weren’t exactly in the middle of nowhere in Scotland, it could take a while for first responders to reach me if things went south. I don’t point this out to scare people. I just want you to be smart and consider the possible dangers.

Murray Coast Trail Scotland 2014

The next summer, we went on a via ferrata trip with some friends in the Dolomites (Italy). I was much more prepared this time. I had talked with my doctors and a dietician about my active holiday and we had discussed some strategies to help me keep my blood sugars stable during those active days in the mountains, carrying a lot of gear in my pack all day.

These were some of the things we discussed:

  1. Medication dose: I lowered the dose of sulphanylureas and even stopped taking them completely after a few days. I kept Metformin on board (yet today I wouldn’t, I think I was so insulin sensitive with all the movement it just doesn’t make a difference anymore).

  2. Food: the dietician informed me about food pairing principles to slow down digestion and keep my blood sugars stable for longer. Explaining this in depth would take me too long for the purpose of this blog post. In short: pairing carbs with fibre, fat and/or protein slows digestion. Protein and fat can also raise blood sugars hours after a meal. In conclusion, she suggested I paired my carbs with fat/protein every meal.

Both of these strategies combined with a good stash of snacks and well informed friends made this second, more adventurous trip a success. I still carried only one blood glucose meter and only needed oral meds, which of course simplified things a lot! Another perk was that we decided to sleep in mountain cabins which offered breakfast and dinner. I only needed to worry about lunch and snacks.

A few examples maybe of the food I consumed during that trip. Since we set out into the mountains for six days it’s obvious I was only able to carry shelf stable items with me. I was also mindful of the weight of these items. The backpack, via ferrata gear and sleeping gear would already weigh a good 6 kilos. On top of that I needed extra clothing, water and food.

A few examples

  • Protein bars

  • Trail mix (nuts and dried fruit)

  • Crackers and bread sticks + hard cheese (think parmigiano in Italy ☺ ) or beef jerky

  • Instant noodle packs

  • Avocado, fresh fruit and cherry tomatoes for the first day

  • Tinned fish to pair with the crackers

Of course I also carried regular low snacks (fast sugars).

  • Dextro

  • Dried fruit

  • Apple sauce

  • Crackers on their own

I tried to snack at regular intervals (1 to 1,5h) and stop for a decent meal at lunch. I didn’t wear a CGM back then so I have actually no idea how my sugars behaved. I did feel good though with good energy levels and only a few lows that I could catch early on. My hypo-awareness (ability to sense a low blood sugar) was still good back then.

This was a very successful trip and made me feel very empowered and confident. I could do this WITH diabetes.

Dolomites, Italy 2015

I am sorry to tell you this isn’t a fairy-tale. And the truth is my next couple of trips didn’t go as well. Even when applying the same strategies with medication dosing and food I wasn’t able to keep my blood sugars this stable for any other trip until 2021 when I was finally on insulin.

I was at a loss for why these same strategies didn’t work anymore and my doctors couldn’t give any answers either. Looking back I have a few theories:

  • My pancreas was producing less and less insulin so the medication dose went up. Yet, I often have experienced times of sudden ‘insulin production’ as I call it. So for some reason my pancreas would work again without me knowing it right away and I would keep taking the same dose of meds.

  • The doctors put me on a cocktail of type 2 drugs which made it increasingly difficult to play with the doses.

  • Because I suffered frequent lows, especially during exercise, I became less and less aware of my lows. I wouldn’t feel a low until I hit numbers below 50 ( 2.8) .

  • Despite all my efforts, my HbA1c would keep going up so I adopted a low carb / high fat diet. This most likely made me insulin resistant at first (which would help for the lows) but also made me have even less grip on my sugar levels with medication and activity. I was spiralling out of control.

In hindsight, I learned a lot during this difficult period of time and I am pleased to say I have now a very good understanding of how my body reacts and have developed some solid backpacking/hiking strategies. I’ll pack this one up for now and will share with you all my tips and tricks in part 2 of this post ☺

Dolomites, Italy 2015