Over the weekend I had an eye-opening experience, thanks especially to diabetes educators, young kids with type 1, and their families and supporters in and around Toowoomba, a large country town just north of the Queensland border and a couple of hours inland.
– Anybody wishing to donate toward the Born to Run Foundation, please visit my fundraising page here –
A couple of lively diabetes educators asked me to come and talk to their group after AcT1vate, the conference for active type 1s hosted by HypoActive in Victoria. That was the first chance I’d had to simply hang out with other type 1s who are trying to do their thing, whether it’s with the support or in spite of the ignorance of the networks with whom they manage their D. AcT1vate was a really exciting opportunity to speak about Team Born to Run and what we did last year, and what we’re doing running in the Simpson Desert in just a few weeks.
But AcT1vate also felt like safe ground, because I know the experience of being a type 1 diabetic, trying to find out how to run a half-marathon, or 100km, and realising that there are still a few grey areas, unanswered questions, and naysayers. I don’t know what it’s like to be a diabetic educator, unsupported by Government health funding priorities, under-resourced and misused. I don’t know what it’s like to face my teenage years, having never played sport without having to think about my insulin levels. Teenage years are hard enough, just with hormones, girls, schoolyard pecking orders and exams to deal with, let alone having to mimic a functioning pancreas. And some educators are also long-time diabetics. They have lived through the diabetic dark ages, of testing urine for blood sugar and using unpredictable insulin with manual injections using archaic equipment.
I’m type 1 for 5 years now and so far we’re all good. Living through that particular dark ages for 2 or 3 decades, to come out with all limbs and eyesight in tact is a massive achievement and should be applauded.
But there is another kind of diabetic dark age, and unfortunately it’s one that people are still living through, every day in rural Australia. Being a city diabetic in Sydney, less than an hour from Royal Prince Alfred Hospital, home of Australia’s first dedicated diabetes clinic, and a world-leading model that has been adopted throughout many modern nations of the world, my glucose meter is self-contained, my insulin pump makes running ultramarathons a lot easier than the handheld alternative, and now when it suits me I plug in a constant glucose monitor and watch what my blood sugars are doing on a digital graph.
Some health professionals have balked at what I do, but if anybody ever tells me I can’t do something, rather than how to make it happen, I can always turn to someone else for advice. That’s the power of choice, and access.
Diabetes is complicated, but ultimately simple. Here is the problem, the solution looks like that, and…. go!
But in 2013 some people aren’t getting told about the solutions, and instead they’re being given more problems.
I heard about one health professional working with type 1 diabetics encouraging children to aim for an HbA1C of over 9. HbA1C is a blood test that measures blood sugar management over the longer term. As long as it isn’t the result of frequent potentially dangerous low sugars, 6 is an ideal number and the closer to 6 you score, the better your chances of avoiding longer term health issues like nerve, circulatory, organ and tissue damage. If you’re scoring 10 or higher, studies suggest an exponential increase in the risk of catastrophic health effects. The World Health Organisation defines a fasting BGL of 9 or greater as being diabetic. So encouraging patients to more or less average their sugars around this mark is about the same course of action as just sticking them in the Too Hard basket.
And I also, shockingly, heard about a sports dietician who disparaged a young couples’ management of their kids, not for their lack of interest or ignorance, but for over-testing their kids. These kids were great, happy and lively. These parents were enthusiastic and keen, with challenging questions that caught me out when I forgot that the one thing about type 1 that is the same for everybody is that we all experience it differently. They knew their stuff. But this sports dietician took their money, told them that they were overtesting their kids, and ultimately – after first threatening to do so – reported them to their paediatrician for being conscientious. All this, while outside of town the kids’ HbA1Cs are more than 10% higher than their city counterparts, as some practitioners continue to shun pumps and instead prescribe insulin therapies that haven’t been standard practice for years.
Meeting these people and having the chance to tell them that they are right, and that a better diabetic future is possible was a profoundly special experience, one that I am intensely grateful for. When running gets really hard and my body just doesn’t want to go with me anymore, I’ll think sometimes about how failure specifically sends a message that it’s okay for type 1s to make excuses, and to quit. And that’s always just one more reason to keep going. And now, having met these people fighting the condition, fighting the system, and fighting for a brighter and more exciting future at the coalface in Toowoomba, I’ll think of them too.
I will soon post here about the presentations in more detail, but for now I wanted to post a number of links for the Toowoomba Darling Downs Diabetic Group to follow up and have a look at some additional sources of information for the aspirational Type 1s amongst them.
Ian Gallen is a diabetologist who worked with multiple gold-medalling British Olympic rower Sir Steve Redgrave. This article is great because it’s a reminder that every diabetic athlete is also an athlete. https://secure.sherbornegibbs.com/bjdvd/pdf/1204/Vol4_Num2_March-April_2004_p87-92.pdf and this one looks at intense exercise and its interaction with and effect upon type 1 physiology http://xa.yimg.com/kq/groups/19520777/37793276/name/Current+opinion+in+endocrinology+diabetes+and+obesity+2009+Lumb.pdf
Gallen is now medical editor for a site I have not fully explored, but am certainly excited about – www.runsweet.com – a site dedicated to news, discussions, and topics that see sporting pursuits and type 1 converge.
As I said repeatedly on the weekend – www.exT1D.com.au is an invaluable resource for anybody pushing their boundaries physically while trying to manage the complexities of diabetes under exertion. It’s well worth the $80 per year for the information and access it provides. Hopefully, this resource will become even more widely acknowledged over the next couple of years.
I have also found inspiration from the pursuits of Marcus Grimm, a type 1 ultrarunner who initially caught my intrigue as I read his diary of the pursuit for a Boston qualifier. Check out Marcus’ blog at Sweet Victory and check out his coach, elite ultrarunner and marathoner Missy Elvin Foy. Missy is a machine and if we could all run like her the world would be a much better place.
HypoActive is the website to check out for an active Australian diabetic network, so too Type 1 Diabetes Network which is really a bit of a placeholder at the moment as far as sites go, but is superactive at https://twitter.com/T1DN.
The American active network starts with http://www.insulindependence.org/ where you’ll find a bunch of amazing stories and helpful people in the forums, although my favourite has to be Jen Davino. Check out Jen’s blog at Training, Diabetes & Life and you’ll probably fall for her too – she’s truly a gem.
And I would also recommend http://www.integrateddiabetes.com/ – not because I have made much use of this site yet, but because it is an online resource presided over by Gary Scheiner, author of Think Like a Pancreas and an outstanding T1human with a wealth of knowledge and compassion for diabetics and the challenges they/we face on a sometimes daily basis.
And, of course, if you don’t already have a copy of The Diabetic Athlete’s Handbook in your diabetic household – get one! It’s basic but very useful, either as a starting point or a fallback position when things just don’t work out.