In RIDE Cycling Review #64 there was a feature by James Stout about what it’s like being a cyclist and a diabetic. This is a topic that deserves as much attention as it can receive and that’s why we have decided to publish the story online while the magazine is still on sale. Here Stout’s story on his necessary injections…
The necessary injection… living with diabetes
– By James Stout
Most of us know that diabetes exists, that there are different varieties, that insulin is used by those who have it, and that it is becoming more prevalent in some societies. James Stout lives with type one diabetes, a condition that needs him to understand his body better than some. He explains how it affects his life and his cycling…
I can still remember the first time I injected myself. The feeling of strangeness, of crossing a sanctified barrier of flesh which, despite having taken pills, potions and poultices for most of my life, seemed somehow different, and scary. It didn’t hurt and I’m so used to it now that I barely notice, it’s part of my day like making coffee or brushing my teeth. I can also still remember injecting myself in the showers after one of my first kermesse races and one of the old riders telling me not to do it there and to take my needle and throw it away at home. I think he was more shocked to find out I was living with type one diabetes than I was on the day I found out that poking holes in myself was going to be a pretty major part of my adult existence.
I was diagnosed with diabetes at 18. I was already set on being a pro bike racer and convinced that in a few years I’d be the next Miguel Indurain. The doctor sat me down and quietly explained that: a) cycling 100 miles wasn’t good for anyone; and that, b) doing so was impossible for a type one diabetic such as myself. The same youthful exuberance that had me attacking the elites in junior gears (until they dropped me like a hot potato) led me to inform this professor of endocrinology that he could “f–k right off”.
I walked out of the hospital and I didn’t cry. I wasn’t upset; the diagnosis felt like a weight off my shoulders. Now I knew why I wasn’t getting any faster. Before I had felt like I was riding into a brick wall. I’d been living with a blood sugar five or six times the normal level so getting my glucose levels into the normal range felt great. Now I had a hill in front of me, and I could climb it, and climbing hills was what I did. I went straight to the library and got on with what I wanted to do. I applied the same attitude to diabetes as I did to training. I equipped myself with the best knowledge I could find and went after it with all the energy I had. I devoured Pubmed, the journal of endocrinology, undergrad medical textbooks and now that I had insulin I devoured all the food which I’d been instinctively avoiding as it made me feel awful. I accepted that, for a long time, it wouldn’t be carbon wheels or aero helmets that made me faster, it would be beta analyses, holes in my finger, a blood and sweat-spattered notebook and lots of trial and error.
Diabetes is often categorised as ‘type one’ and ‘type two’ (and gestational, but that’s not likely to be something you come across in competitive cycling). The modern medical establishment is moving away from this binary model towards a continuum but for now you can see it as either/or.
Type one diabetes is an auto immune condition, you’re not born with it but you’re predisposed to it and at some point or other your body will knock out the beta cells in your pancreas and boom, you’re living the dream along with 20 million others worldwide. By contrast, type two diabetes is a disorder of insulin resistance as the body becomes less sensitive to the insulin it produces over time.
Diabetes type two is what you mock your mates about, what rich white liberals wring their hands about and what poor brown people die of. Whilst it is associated with being overweight or obese there is a stronger correlation with certain racial groups and with those living below the poverty level. It’s a lot easier to represent the increasing incidence of diabetes as due to people not taking care of themselves than us not taking care of the rest of our society.
Whatever one’s condition or the reasoning behind it, nobody is empowered to better care for themselves by mockery so please remember this when discussing diabetes.
Empowerment is important, especially in the case of type two which one can improve and manage with exercise and a healthy diet. If caught early enough pre-diabetes can even be reversed. It takes a lot of courage for a 180kg man to get on a bicycle and I’m consistently humbled by the hurdles the type two folks I work with overcome. I’ve raced my bike for a living all over the world and I’ve never seen anything quite so moving as that 180kg man doing his first 10 mile ride (nor as wonderful as him passing a guy on a TT bike six months later).
Diabetes type one is what I have. I can’t “cure” my diabetes with cinnamon, or acai fruit or acupuncture or meditation or raw food. Please don’t tell me I can, or that you read about someone who did, or that you saw something on Netflix last week… If I don’t take insulin I’ll be very unwell, in a week I will be bedridden, then in a few weeks I will lose my eyesight, limbs and kidneys and maybe my life.
I don’t live in fear of any of these things but that’s because I have access to insulin. If I stopped taking my insulin for some marketing scam it wouldn’t be much fun. It’s annoying when someone suggests they can cure me with cactus petal cordial but I welcome any chance to talk with and educate people about my condition. The more people know the more they understand, the less they offend and the more they can help and thus the easier life becomes for me and all the other people living with diabetes worldwide.
What’s important is that whatever form of diabetes you or your friends are living with, you live with it. I’m not a diabetic, it doesn’t define me. I’m not suffering from a disease either. I’m living with a condition. I challenge anyone who thinks I’m sick to come on a ride with me, we will see who’s suffering. That said there are some things I have to do differently and I have to acknowledge my diabetes, there’s no hiding it.
I take care to ride with more food than I’m likely to need. I always have an emergency 100g of fast-acting carbs in case I experience a low blood sugar (hypoglycaemia or ‘hypo’). I ride with one bottle with no calories in it, high blood sugar isn’t as acutely dangerous but it’s not good for performance or long-term health. When I’m high my legs feel heavy and lactated and the incessant thirst can be frustrating.
I inject myself with insulin and test my blood sugar by pricking tiny holes in my finger. It’s not a big deal and hurts a lot less than some of the pedalling I do. It’s such a part of daily life that it comes as naturally as breathing and eating and, just like those two things, I don’t forget to do it.
Insulin is the key that opens your cells up and allows them to store energy; without it I’m useless on the bike and I’m harming my health. As my training increases I need less insulin as my body’s metabolic rate also increases.
A big part of being an athlete with diabetes is knowing how much insulin to take and when. Knowing when it’s okay to go high because I’m about to ride hard and when I need to correct for a high with a shot of rapid acting insulin. I couldn’t find this out in a book – there isn’t one and it wouldn’t help. We are all different. I experiment, I listen to my body and I learn. Anyone living with diabetes is more than welcome to contact me and ask for help but it’s not a case of giving you a fish, or even a rod. You have to know how the rod works and build the best rod for your fishing hole. No, it isn’t easy but if you want to be a bike racer very little is. If you’re ready to take on road rash, lactate, heat, cold, hunger and the flack of being a bloke who shaves his legs… then diabetes needn’t be the thing that stops you.
People often ask about my diet and, if you judge me by my Instagram feed (@jestout), I exist on pastry, craft beer and things that come in tortillas. In reality I eat healthily most of the time. It makes me feel better, partly it helps my diabetic control but it also helps my all-round health and performance. Life is too short and food is too good for me to live on carrots and celery and I enjoy a beer and cookie as much as the next bloke – I’m not going to miss out on those things because I have diabetes or because I’m a bike racer. But I’ve learned how to use my insulin and my bike riding to stay healthy and skinny whilst also staying happy.
I do avoid the sports nutrition that so often dominates our sport hype. (I actually feel that the rest of you lot are slowly catching up to what I’ve been doing for years.) You won’t see me out training with pockets full of rectangular goop. I tend to try and keep the fast carbs for fast races and in longer/slower races or training days my pockets are stuffed with sandwiches, sweet potatoes with peanut butter, bananas, dried fruit and home baked bars.
For most of you, diabetes will be nothing more than an interesting aside but for at least a few people reading this it is there every minute of every day. Hopefully as a more informed friend you’ll know how to identify the early warning signs in yourself and your family. As an educated and sociable person you will know the lingo when you next bump into a bloke on the road with a syringe in his back pocket (unless he has a steely Texan stare, in which case I can teach you some other words to use) and won’t have to worry about raising the topic.
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Respond to warnings
Symptoms of low blood sugar include shakiness or hypoglycaemia, sweating, chills, nervousness or anxiety, irritability, confusion, high heart rate, sleepiness, blurry vision, weakness, tingling in the lips, difficulty coordinating simple movements and in extreme cases seizures or unconsciousness. In short: when low, people can be belligerent and appear as if they’re drunk or concussed.
It’s important for me to carry sugar to treat a ‘hypo’ incident and for my mates to know how to deal with it in a race. I can’t count the times when I’ve been cornering like a sportive rider and felt a hand on my lower back as a friend – often from another team – pushes me, gives me time to take in a couple of gels and take it easy while my blood sugar comes back to normal. It’s only through educating my friends and colleagues and sharing my experiences that I’m able to continue racing at a high level and manage diabetes.
If you’re riding with someone with diabetes, 50g of fast-acting carbs (that’s two gels or a pack of chews) should get you out of most hypos whilst exercising… 25 is enough if sedentary.
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Note warnings and respond accordingly…
There’s a theory which suggests that a stressful event pulls the pin on the autoimmune grenade which is locked up in the genes of type one diabetics. Interestingly adult onset type one is common in those who compete in weight controlled endurance sports which put a huge adrenal load on the body. (Ring any bells?)
In the months before my diagnosis I’d been riding a lot, eating a little and feeling worse and worse. Eating made me feel terrible so I didn’t eat. I got leaner and climbed slower, then I got even leaner and could barely get to the climbs let alone up them. I was thirsty all the time but I seemed to piss out more than I drank. It’s important to recognise these signs (weight loss, frequent urination, unquenchable thirst) and address them as soon as possible with a doctor if you or a friend experience them. Hopefully you’ve seen that, when managed properly, diabetes isn’t a burden but without medical help it can be a huge one.
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As mentioned in the main article, people living with diabetes type one can’t live very long without insulin. Sadly pharmaceutical companies can’t live very long without massive profits and thus the price of insulin in many places is totally out of sync with incomes. Life expectancy in Mali, for example, is 12 months post-diagnosis and that is simply not right.
At 100campaign.org we are working towards 100 per cent access to insulin by the 100th anniversary of the discovery of man-made insulin, 2022. I also run a program which uses cycling as a way to empower and bring exercise to the native American community, and it’s the most rewarding thing I have ever done on a bicycle.
– By James Stout