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.

Today can be an exception

Well, here I am, it’s 3am in the morning and I haven’t gone to sleep. I was at a birthday lunch today. Well, technically yesterday. I think you know why I’m up at this hour.

I don’t believe healthy eating is about resisting temptation. I believe it’s about choosing to be quite satisfied by a healthy diet. When I’m offered something, I don’t think “I shouldn’t”; I think “I’m not interested.” Well that’s what I aim for, anyway. It used to be a lot easier before epilepsy etched some things in my brain.

A few times a year I like to make an exception. To get caught up in the moment and do what I feel like. After all, it’s not really going to have much impact on my long-term health. However (and I seem to forget this every time), it has a huge impact on the rest of my day and night.

It’s funny how I’m confident that I can follow it up with the right level of insulin—and I conveniently forget that I never succeed.

Call that a doggie bag? This is a doggie bag

It doesn’t help that I take it to a ludicrous extent. And that I do have an enormous stomach. And that people don’t eat what they ordered. Seriously. “You can have the rest of my lava cake, I’m full.” And the garlic bread is just sitting there, getting cold. And that the cake and garlic bread are delicious. Why let it go to waste if nobody wants it and I’m not too full to enjoy it?

I was always like this as a teenager. It’s natural for me. (I didn’t have diabetes back then.) When I enjoyed people’s company I would just eat on autopilot. These days, I just tell myself I’ll sugar surf it. Which actually sort of works until it’s late and I either have a heap of tail insulin in my system or a heap of food still digesting.

By the way, something subtle that I learned a while ago is that larger meals take a lot longer to digest. I had to be particularly careful about this with my super-fast-acting insulin techniques. A classic example is when I eat double the amount of breakfast cereal, there’s actually less of a spike! (When taking the appropriate amount of insulin.)

But the effect also applies with other sorts of meals. I think this is part of the reason that many people find they need to spread out dosages for pizza, or find it quite challenging to manage because it’s really hard to be consistent what with different restaurants, different serving sizes, different bases, and sharing pizzas.

Exceptions are great, except...

... they’re not. I hate to burst my own bubble. Exceptions are more than extra work and vigilance. They have consequences.

That’s not to say they are a bad choice. Enjoying yourself can have a cost, but that’s no big deal. I’ve never had a hangover but in a lot of ways this is similar. Lots of people are happy to do it sometimes.

But, I don’t drink and I’m not interested in it. I think that’s a mentality that can be cultivated about all sorts of things, including food.

When you do it, own it

Like I said, I hate to burst my own bubble. But if there’s anything biadepsy has driven home, it’s that confronting unpleasant realities helps reduce greater unpleasant realities in the long run.

So, from now on, I’m going to be transparent with myself. Exceptions have consequences. If I decide to make an exception, I own it! I’ll enjoy myself without guilt, make the most of the opportunity, and feel the consequences were justified.

Exception or norm?

Something to watch out for is not realising how often you make exceptions.

“My birthday only happens once a year, let’s make an exception.” “I go to the movies a few times a year, let’s make an exception.” “I haven’t moved into a new house for three years, let’s make an exception.” “I go to weddings three times a year, let’s make an exception.” See how quickly it adds up?

I like blogging...

Verbalising all this has made me realise that I could temporarily connect to OpenAPS following this kind of day, even when I’m not otherwise using OpenAPS. Time to order an RPi...

Having Faith

When you have a worrying health problem, and visit a medical professional, it is hard not to feel a sense of relief. It is hard not to feel like a burden has been lifted from your shoulders. Unless they are rude or the news is very bad.

It’s natural. It’s automatic. You feel a lump somewhere. You go to the doctor. She says, “it’s probably benign, but we’ll run some tests just to be sure.” You’re relieved that it’s probably OK. You feel like you’re in safe hands; you trust that your doctor knows what to do. You can relax because it will all be taken care of. You don’t have to figure it out on your own. And you feel very grateful to the doctor. Even if the lump turns out to be malignant, you’ll know the doctor will work to maximise your chances.

When you’re sick, scared, confused, desperate, or trapped, and someone offers help, they are your lifeline. You trust them, you feel like someone is looking after you.

Faith Healer comic
Comic by Gary Larson

Put simply, when we are in times of crisis, and there seems to be nothing we can do, we turn to faith. We need something to hang onto. Our only hope is medical professionals, so we put our faith in them.

And that is exactly what it is—faith. Far too many times, I watched a medical professional be out of their depth, but I didn’t see it, didn’t want to believe it. I had this hope that what they were doing was guided by hundreds of similar cases and what worked best. I felt they had some hidden plan, something they weren’t telling me, and I trusted it.

Hidden plan. Yep, that’s faith for you.

I knew what I wanted. I knew what I needed. I knew what wasn’t working. But when I asked them for help, they replied with answers that contradicted all that—or no answers at all. And I willingly submitted. I felt I should swallow my pride and anger. That’s faith for you.

When I came back to the real world, I remembered that the same thing had happened last time, and the time before, and their answers didn’t help. But maybe... maybe it was part of a longer-term plan that would work out.

Each time I lost a little faith. But whenever I switched to a new medical professional, I gained faith again. A new relationship, new ideas, renewed trust.

This has happened both with diabetes and with mental health. With diabetes I don’t generally feel there’s a secret plan, but I used to have faith that they knew what they were talking about, and that their failing to acknowledge things I was saying was an indication that I was in the wrong. With mental health, apart from two decent people I saw, there was never any... advice or guidance. Just questions and questions. It felt like they were gathering information. They were making notes. Surely it was leading somewhere. Surely the information would be used for something. It never was. It was just their approach to ask questions and let me find my own answers. I have no need for that.

It’s happening again. I’m visiting a mental health professional, and for the last few visits, I’ve been waiting for the next phase of his plan. What plan? I bet there is no plan. I’m waiting for Godot.

Sound familiar? Don’t fall for the “secret plan” thing. The medical professionals don’t do it to you. You do it to yourself. They have no idea that you feel that way!

But, if they are clearly out of their depth, and they don’t admit it; if they avoid your questions or give you surface-level answers, find someone else. Now.

If that’s not possible, then empower yourself. Read, connect with other people who share your illness. Your medical professional can still be helpful, especially if you know what you want and are willing to stand up for yourself. That can be hard, but a healthy level of anger can help. Don’t let faith stand in the way of your health.

It was actually while writing this post that I realised I’m wasting time and money right now on a psychologist who is not giving me what I need. It doesn’t mean he’s bad at what he does, just that it’s not appropriate for me. So I’m ending that relationship.