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.
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.
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...
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.
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.
