Vicious cycling

I’m shattered. Last night, for the first time in a while, I had dinner with a friend, and then rode my bicycle home. Getting around on my bike is deeply ingrained in my psyche. It’s a sort of harmonious, natural relationship between the traveller and the world that you don’t get with an engine. It doesn’t pollute, it’s healthy, parking is easy and the travel time is often comparable. It’s just right for me. And I grew up with it and it’s such an important part of my relationship with my dad.

Which is why I’m so torn up right now. The realisation hit me that I have a health condition which prevents me from mixing bike rides and meals. I can’t go and meet someone for lunch by bike. (Or rather, I can’t come back on the bike.) I just can’t. It is a recipe for disaster.

I detest gyms. It’s just not who I am to get my exercise that way. Idiot doctors go on and on about how people with Type 1 diabetes don’t get more exercise, and that it helps improve diabetes control. If that were the case, why are over 60% of people with type 1 diabetes inactive? (source and source)

The medical community uses the word “fear” to explain why people with T1D don’t exercise. As in, “fear of hypoglycæmia.” The correct word, at least for a good proportion of these people, is inevitability.

Don’t give me any of that “it’s just about learning to manage it” bullsh—. T1D is different for different people. Some people’s bodies just don’t work that way.

I have a management strategy. Don’t eat. It works. And I’m not too bothered by it, because I don’t have hunger problems when I don’t eat three meals a day. But part of the point of going for a ride is to go out for lunch, or dinner, or just stop for some unplanned chips at the beach.

For years I’ve been telling people, “it’s difficult,” “it’s hard,” and I felt demoralised by it. But I’m looking back at it all and seeing that it’s worse than that. It’s not hard. It’s impossible. And I have to give it up. Kind of like having to give up alcohol (or caffeine!) due to a health condition.

The difference is, nobody told me. In fact I was told the opposite. I can easily say “no, I don’t drink because it could trigger seizures.” That was what my neurologist told me and my own experience confirmed. But no, I was told, exercise was great. I was told, you could live the life you want and still do everything you enjoy.

Renza told me that an endocrinologist once admitted something to her: “the biggest mistake we made a few decades ago was telling people they could live a normal life with Type 1 Diabetes.” This was so profound that it took me a day to look back and realise how significant it was.

Of course there are two sides to that coin. Think about the critical attitude shift among doctors whereby they once pushed strict, uncreative regimens with the aim of preventing hospitalisation or death, but now try to help patients have as little impositions on their lives as possible. Newly diagnosed people must not be made to feel like their life is over. And of course, there is trying to instil the right sort of positive attitude and spirit in people with T1D.

Bicycle pasta
I’ve had to give this up

I live a stone’s throw from Bondi beach, but I’ve gotten in the water about three times in the past two years. In the last six months I haven’t touched pizza, pasta, milk... or another two things really embedded in my psyche: cereal and Thai food. I haven’t gone skiing since I got T1D. I travel much less because the logistics are so draining.

People with cœliac or egg or peanut allergies have to make similar sacrifices. But they are told that immediately! I was told I didn’t have to give anything up. That is exactly what was said by my diabetes educator two days after I was diagnosed.

What that endocrinologist (very bravely and humbly) said is deep and profound. It’s like one of those Zen kōans that are packed full of subtlety and meaning-that-cannot-be-understood which you need to meditate on for days.

Look, this wasn’t supposed to be about my bitterness towards the medical system. I’m just sad. I’m sad when I think about riding my bike with dad at night in Thailand, between rice fields or by rivers, and stopping at a restaurant, and just being swept up in the joy of family. I’m sad when I think of when we used to go swimming before school every morning. So many times in the last ten years I saw him feel upset and rejected and frustrated because I say “no” most of the time. And that makes me sad.

Things got easier a few years ago when I got a CGM and he began to understand what happened when I exercised. This is part of why I want to help people find better ways of communicating with their families and friends. It’s hard for people to get it. But it can make a big difference.

The Kitchen

Ow. My eyes.

Here I am at 6:30am, catapulted out of bed by a low alarm, and—hang on, my thoughts are all out of order. Brain booting.

Windows is for noobs.

Right, so, this happened 5 minutes ago.

I’m asleep at my parents’ place. I always feel good when I visit. A low BG alarm smashes through my dreams like a wrecking ball (which according to Mythbusters—as unreliable as this source is—was apparently never a major demolition tool.)

Gee it’s chilly. This place is a lot better... ventilated than mine. I’m wearing pyjama shorts. I really don’t want to face the cold but that fast drop is dangerous. So yes, I catapult out of bed and run downstairs to the kitchen. I check the fridge for liquid carbs, but it seems my parents have got the message that fruit juice is a lot less healthy than people think. (Five stars on the Government health rating! Hah!)

Oh well. Need to turn the light on to find something. Yeoww! My eyes sting. Hunt. Hunt. Unwrap. Eat.

And then, as I’m standing there, right in the centre of the kitchen at the crack of dawn, memories come back to me. I’m not a “flashbacks” kind of person, and I wouldn’t call these flashbacks, but it hit me that there had been many, many times where I had been treating hypos in that kitchen. Under a lot of stress. Or ravenously hungry, eating half the kitchen. Many times at 2am. Many times at 6am. Many times feeling freezing. Many times being scolded by my mother. (I don’t blame her, and she doesn’t do that anymore, but that’s another story.)

I remembered lying on the floor, groaning and whimpering with the sick feelings of a “hypo aura.” And those lights. Those lights! The colour, the intensity; what an interesting association. I guess I used to treat a lot of hypos in the evening or overnight.

Well, my sugar is pretty safe now. Hopefully I can still get back to sleep. Have a great morning...