I was always happiest outside. As a kid that’s where I wanted to be. There and the climbing wall. I started climbing aged 9. My parents thought I would enjoy it, as whenever we went out walking in the Peak District me and my brother would climb and scramble over all the rocks we could find and were fascinated with watching the climbers. So climbing and the outdoors were always a big part of my life, well before I was diagnosed with diabetes ages 19.
My journey to diagnosis wasn’t simple. I was in Canada when I got ill while working a ski season. The symptoms gradually crept up on me, but even then what took me to the doctors weren’t the normal symptoms of a yet to be diagnosed diabetic. Yes, I was tired all the time, and drinking close to 6 litres of fluid a day. I was eating about 4000 calories and ALWAYS hungry. But I wasn’t losing weight and until the 3 weeks prior to diagnosis I was doing pretty well considering.
Those last 3 weeks were some of the most surreal of my life. Insanely bad headaches, loss of coordination, crippling fatigue. These are the things that drove me to the doctor’s office again and again and eventually made me call my mum and get her to fly halfway around the world to help me pack my bags and take me back to the NHS and finally a diagnosis.
I was diagnosed with diabetes in April 2014. They assumed I was a Type 1, albeit one with a rather odd presentation. I was taught how to inject insulin and to test my blood sugars. I learnt what number meant I was low and what I should eat, and within a few weeks I was back on my feet, healthy and active once more.
Eight months later I was ill again. This time it wasn’t quite such an easy diagnosis. It took almost a year and a half to get a diagnosis of Chronic Fatigue Syndrome. In that year my life in many ways stood still. My world had shrunk to the size of my parents’ house in a city I didn’t want to be living in. I had little I was able to do and almost no social life. My only escape was when I found a kayak club on the River Thames. The weekly kayaking sessions would leave me too tired to leave the house for days afterwards but they were worth it. They were my link to the life I had lost and gave me the time outside and the social interaction that I desperately needed. For the first few years back in London they were my lifeline.
After 3 years I started to recover. I was able to start working part-time again and found myself a job in an outdoor shop. In the winter I worked as a ski boot fitter, in the summer as a general assistant. Despite the work and the new immersion back into the world, I still wasn’t ready to take on big outdoor adventures. What little I had done and my kayaking sessions had taught me that managing my blood sugars during outdoor activity was hard work. On the water I had a water-tight box in which to keep my finger prick meter and always ate a carby snack before I got started and carried small packets of haribo. These were eaten on numerous occasions, including having just got safe from paddling through the middle of a bridge with a large clipper boat chasing us!
After 4 years I had largely recovered from the Chronic Fatigue and was doing more. I was starting to look at other ways to measure my blood sugars, as I was finger pricking every few hours and knew there were better things out there. I looked into getting a Libra continuous glucose monitor (CGM) and got in contact with my hospital to arrange an appointment to talk about getting one.
At this point my whole understanding of my diabetes changed. The nurse at my appointment didn’t ask me what I had come in for, instead she asked me if I had had the results of my genetic testing. This testing had been done several years previously and I had all but forgotten about it. I was used to being called an Atypical Type 1 and other such things by the doctors and knew my diagnosis had been unusual. But the nurse explained to me that I didn’t have Type 1, in fact a genetic mutation had caused my diabetes.
Although this was big news, in truth it has had little impact on the way I treat my diabetes. Mine is a mutation of the INS gene (insulin gene) and so the easiest treatment for me is to take insulin, though I do take smaller doses than a lot of people do. But it meant I didn’t qualify for funding for a Libra and so had to continue on with my finger prick meter.
On a ski holiday I started to get frustrated with the system. Finger prick meters don’t work below 5 degrees centigrade and sticking it under your armpit and jiggling up and down to create heat when you think your blood sugars are low is no one’s idea of fun! So shortly after this I decided to take the plunge and get a Dexcom CGM. This technology has changed everything for me and I don’t believe I would be where I am today without it.
In 2019, I travelled Europe for 4 months. This was my first time really hiking and testing my limits as a diabetic. I had some pretty bad hypos in the Norwegian mountains and started to learn just how hard it was to keep my blood sugars in check in the outdoors. I started to play with my blood sugar and insulin ratios and learn what I needed to do to look after myself when outside and away from civilization.
By the time I got back from my trip I was ready to make big changes to my life. I no longer needed to be living with my parents in a city. I was still keen to travel and decided my next adventure would be a year in New Zealand. But then Covid hit and, as we all know, it was hard to do much at all in the spring of 2020.
What I did do was some thinking. I realised it was time to start making a plan for my life. I knew I wanted to work in climbing and the outdoors but had no idea how to get started. I found a course at Plas y Brenin (National Outdoor Centre for England and Wales) that was an intensive training course for those wanting to work in the outdoors. I had found my way in.
In my 4 months at Plas y Brenin I leant a lot, including how my blood sugars reacted to the activities I was doing and how best to manage them. I took the experiences I had had before and tried to use those to help me stay on top of the numbers. For the most part it worked, but some days it didn’t. On leaving the course and continuing my journey into the outdoors, my experiments in how best to look after my blood sugars have continued. I have tested different foods and ways of eating when out. I have changed my insulin ratios. I have seen what difference different carbs make and which sweet foods seem to work best to bring blood sugars back up.
I have also spoken to and observed other diabetics in the outdoors, both those few who have made a career doing this and those trying outdoor sports for the first time. I have seen the struggles of many of those new to outdoor activities (some from my work in outdoor education centres and some from observations on the hills), and having spoken to other diabetics in the industry wondered why there isn’t enough information out there about how to start outdoor sports as a diabetic and managing blood sugars to have the most enjoyable and safe experience. And so I decided to put something together myself, that could draw on my own experience and that of others in the field. With time, I hope this website can help create a community of diabetics in the outdoors, all able to share our experiences and make the outdoors for those diabetics getting started an easier place to be.
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