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.
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...
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 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.
