All in the wrist

Whooh, there we go. After a few months with only half-maybe-seizures, I had a pretty distinct one. A mild focal/partial/who-really-knows, which is about the worst that happens at this point. But I’m not here to talk about that.

Epilepsy’s major events like tonic-clonics (though I have never had one) kind of dwarf the myriad other weird and hard-to-describe symptoms. I’m hoping that my putting them into words might help others deal with them.

Believe it or not, this post is about... technique. One of the puzzle pieces that has dawned on us recently is the way a seizure changes my technique.

What technique?

I literally mean, technique. The way I drink out of a cup. The way I inject my muscles with insulin. The way I walk! Bianca and I have noticed things that really seem like a change in technique.

At first we called it clumsiness. But that didn’t quite capture it. I just seem to undergo a “permanent” change in the way I move and do things. I use different technique. And it doesn’t quite work. I have to unlearn it and relearn the right technique.

For instance, while injecting into my biceps they would twitch (very painfully). I had solved this problem months ago. And I did this by pressing my arm against the opposite thigh. But now it wasn’t working any more. I knew exactly how I used to do it. I pressed my arm down in my lap. Well, I could have sworn that was it. Eventually I started experimenting and found that I had to press down with my fist.

It was like my muscle memory and my factual memory had been displaced. A similar thing happened with drinking out of a cup. I was arranging my lips in a different way and spilling constantly. I had to experiment and re-learn. Clumsiness doesn’t cover it.

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...

Touch wood

Uh, yeah... so remember this? I didn’t put my actual BG average in that post. It was about 10, both before and after starting low-carb. A bit lower once I started low-carb.

As I said in my last post, diabetes has suddenly started to behave. I’m getting the fabled Low Carb Experience™. Sugars don’t spike, they undulate, and can be reined in using micro-doses.

And my average is the lowest ever.

In the last 7 days, my average was 9.1. But I’ve been learning how to operate under these new conditions, and it’s improved. In the last 3 days, the average was 8.5, and in the last 24 hours it was 7.5.

Bear in mind that for me a hypo is defined as roughly 6mmol/L or below, because of epilepsy. So this is a very tight range.

OK, sure, we’ve got selection bias here—I’m writing this blog post precisely because I’m excited about how good today was. I don’t think I can get weekly averages that are that good. (But I’m going to try!)

The fact remains that when I started low-carb, diabetes did not do what it was known to do. Other people got certain results. I had got those results years ago when I tried it. But when I started low carb several months ago, it was doing something inexplicable, in a sort of “let’s break the laws of physics!” sort of way.

But I thought the cohomology tensor had to be antisymmetric!

The funny thing is, it kept doing that for months before finally deciding, touch wood, to rejoin us here in the spacetime continuum.

And now, everything is manageable, if I work hard. It’s still unpredictable—it’s diabetes. But it’s stopped doing impossible things.

This is why I went on low carb. This is worth the sacrifice.

My diabetes has a habit of being predictable for a couple of weeks and then reinventing itself... kind of like a perpetual midlife crisis, so in all likelihood I’m going to be chasing it somewhere else within a few weeks. But I think that happens less on low-carb. So, touch wood.

I still have Biadepsy

I haven’t been reporting much on my diabetes because it’s been too inconsistent and intangible to really have anything to say about it.

Really it’s been a disaster. I’ve flapped around on some combination of Afrezza, NovoRapid, and intramuscular NovoRapid. Back when I said that my evening basal was intent to reach 0, it did reach 0, and things went great for a few days but that ended and slowly my Levemir slid back from morning to evening.

And suddenly the clouds part and it’s smooth sailing. I just... knew. I told Bianca “tomorrow everything will settle down. I don’t know how I know.” And they did. Diabetes started behaving. And it’s still behaving, a week later.

You might think that my fast-and-loose management was the problem. Think what you like. I’m confident that I know what I’m doing and it’s diabetes that was that unruly. The fact that I could sense that it was finally tamed, before the fact, says something. I mean, I micro-dose a lot and I get a good feel for what diabetes is doing underneath that. But the point is that the micro-dosing suddenly became much less necessary.

Looking back over the last month, I realise now that it wasn’t diabetes. It was biadepsy. My sugars were hard to control, which turned up the pressure on my epilepsy, which played with my hormones, which messed with diabetes, which... vicious cycle. I started working harder to get more sleep, be more aggressive with my sugars, and eat a more repetitive diet, and it didn’t work and didn’t work... until it did. I got off the merry-go-round. And I’m still off it. Hopefully it’ll last a while. These days that does happen.