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...
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.
Good Bad morning everyone! I hope you slept better than I did,
although knowing diabetes I’m sure there are a couple of you who really
didn’t.
I lost count of how many times I was jolted awake by my CGM alarms last
night, but it was around 5. Lows and highs, as usual. Geting up to
treat lows several times.
I’m sleep deprived already, for various reasons, so when I woke up this
morning with that disgusting lazy tired angry lead-weight feeling, I was
like
Obviously I Do Not Want this to
happen again. Preferably ever (haaaah). The go-to approach is to try to
isolate the cause. Recent exercise? Pre-sleep carbs or insulin?
But... recently my insulin sensitivity has plummeted (4 units seem to
do what 1 unit did a couple of weeks ago), my basal needs have been
playing party politics (right, left, and independent!) and pretty much
nothing is stable so basically...
The way things have been going recently, the “diabetes debugging”
approach is futile. That’s when I resort to “diabetes tinkering”.
(Don’t do this at home.)
In plain English, that means that it is useless to try to find what
caused this problem; I just need to mess around with things until they
work. Which is actually fairly typical of MDI basal problems, although I
don’t think that’s the main factor at play here.
Over the last couple of weeks, my Levemir dose has been slowly migrating
from evening to morning. It was at around 8 in the evening and 2 in the
morning, and there was a complex dance including the addition of
a few units in the early afternoon, and an overall rise in total daily
basal, and now my evening basal seems intent to reach zero.
Such crazy things are happening—I’ve been steadily losing weight on
low-carb, which of course is supposed to increase insulin sensitivity.
The opposite has happened. People say their insulin needs drop when they
start low-carbing. Well, mine didn’t. (When I tried low-carbing for a
while years ago, insulin needs dropped maybe 60%.)
So once again,
Of course, I have been having snacks in the evenings, and being lazy
or making mistakes. And I’ve also started using a very different kind of
insulin (Afrezza). And my epilepsy medication hasn’t been consistent
recently. Those last two things scream for “diabetes tinkering”.
Plus, life is hectic. I feel like, because of this blog, I need to be an
example for others, or something.
But after all these years I haven’t managed to get to the point where
I can usually go “ahhh... it’s doing that thing again” and know what
to do about it. It’s like the space of diabetes configurations is
infinite and diabetes wants to explore them all.
Some people have it easier; some have it harder. Some can find carb
ratios and basals that more or less work for long periods of time.
Others are living on a roulette table that never stops spinning.
And it can change over time. In the years when my epilepsy was
untreated, everything would swing and flap around, weekly. Now it’s
not too bad—although I’m asking for trouble by changing diets and
insulins and psychotropic medication.
Did I have a point...? Oh that’s right—my diabetes is all over the place
and I wanted to share that with you, rather than hiding it.
PS I remembered that in one of my fitful dreams last night, I had a
compelling reason to remove a pillow from a pillowcase. I don’t remember
the reason but there was one. I thought it was just a dream. But I went
to the bedroom just now and I found this...
Oooookay so last time I said that I needed to
take it easy for a while. I was experiencing extended
emotional tension, minor irrationality, still not really coping.
That old pattern emerged. Take it easy. Things don’t get better. Keep
taking it easy. No improvement. Rest rest rest. Nothing nothing nothing.
... my medication’s off.
Well, I nudged up my Lamictal by the smallest increment. Everything is
going back to normal. Woot!
Just makes me wonder, if I had been on the right dose, what would have
happened? Something tells me I would never have slid downhill.
That begs another question though: is Lamictal propping me up for higher
and higher levels of stress and overwork? I don’t think so. I have
dialed back my workload significantly compared to previous months, and
am learning to manage stress better. Nonetheless I’ll pay more
attention to getting fresh air and exercise and taking regular breaks.
Aside from physical health it’s good for creativity and alertness and
other things that I depend on.
I keep telling people my epilepsy is virtually gone. It’s an
oversimplification. It’s an easy way of conveying how gargantuan a
change Lamictal has brought to me. But there is still something there.
I suppose a reasonable analogy would be like having malignant cancer
surgically removed, leaving a scar and regularly getting tested for
signs of recurrence.
Right now my health is clearly strained. A week ago I came back
from an intense one-week trip to Sydney. I fit a lot into it. A lot of
meeting friends, giving talks, getting work done, getting my blog
rolling, going to a
Jacaranda Club (epilepsy)
meetup, and spending (not enough) time with family. Some late nights and
even some medication stuff-ups. And then after I got back to Melbourne a
friend stayed over for a weekend. I hadn’t laughed that hard in years,
it was a lot of social interaction for an introvert, plus serious late
nights.
So, it’s normal that I’m wobbly and spent and struggle to cope with
doing work, right? That’s how I feel. Do I just feel that way because I
don’t want it to be epilepsy? Yeah, I think so. But it’s more because
my inner optimist is the voice I generally listen to.
Writing this post is helping me think objectively, though. Is this a
normal human thing, or is it my health? I can never be sure. When I was
untreated, these were some of the early changes that would happen as my
risk of seizures increased.
I am constantly watching myself (and Bianca is watching me too) for
signs that I am starting to slip. Is it normal, or is it a warning sign?
Is it even real, or just due to overthinking? Is it normal? I don’t
know. Is it normal? She doesn’t know. Is it normal? How do you tell?!
What is normal??
Anyone who hears about this would say “that’s really unhealthy.” We
know. But the alternative is disastrous. Unhealthy is better than
disastrous. Kind of like getting painful biopsies to check for
recurrence of cancer.
At the end of the day, I’ve objectively had a very intense time and,
epilepsy or not, should take it easy for a bit. Which is what I’ve been
consciously doing.
But no regrets about the last few weeks. The benefits significantly
outweigh the costs. In this case. There are times when that isn’t the
case, which were very common before Lamictal, but hardly ever now. I
guess that’s why I often say my epilepsy is virtually gone.
I like to figure out how things work. I (humorously) call myself a
“reverse engineer”. And I’m very, very good at debugging, that is,
tracking down elusive problems in computer code.
Unfortunately, this makes me overconfident when it comes to diabetes.
For one thing, computer programs are predictable. If you do the same
thing twice, you get the same result (roughly speaking). If you find
a problem, you fix it. And it stays fixed.
Mathematics was one of my majors at Uni, so I can kick the arse of
graphs and probabilities. Although, like a lot of highly technical
thinkers, I have a distinct lack of common sense.
This all makes me an idiot when it comes to diabetes.
Not working
I have a confession. Since going back on Afrezza a week ago, things
haven’t been at all consistent. Yes, it kicks in faster than Chuck
Norris, but where my sugar ends up several hours down the track wasn’t
consistent. I considered plenty of reasons this might be the case,
including an adjustment phase, learning how to dose again, changing
basal needs, etc.
In the meantime, I went to a diabetes expo telling anyone who would
listen how awesome Afrezza was. The morning of that day my sugars
were sweeet (pardon the pun) but in the evening things didn’t work
out so well, nor the next morning, and I was left with a sinking feeling
that I was evangelising about something that didn’t work.
A few more days of fantastic interspersed with no-better-than-NovoRapid,
and I started to regret ordering a large, prohibitvely expensive supply
of the stuff.
Whoopsie
And today, it finally hit me. I had just pulled my old Afrezza carry-box
out of the cupboard, and started puffing. I got the usual Chuck Norris
kick-in, and thought nothing more of it. As I went on, I pulled more
Afrezza out of the fridge and dumped it in my carry box.
Yeah. Along with the old stuff.
Yeah. The stuff that had been sitting in a cupboard for over a year
plus the stuff that had been sitting in the fridge for over a year.
In the same box. I was puffing them at random, like those high school
maths questions about pulling marbles out of a bag.
I lost my marbles
Whether eliminating this problem will make my Afrezza rave-worthy
remains to be seen. I’m biting my nails to be honest. I want so badly
for this to make my life better. I want so badly for this to make
others’ lives better.
Part of what happened this time was that I was subconsciously
intending to use every last unit of Afrezza, because of the cost. So,
first the ones in my box, then the ones in the fridge, then my new
supply. I didn’t really think any further.
I’m sure anyone would tell me that year-old medication stored in a
cupboard out of its original packaging was probably best thrown out.
It’s common sense.
Even if Afrezza is remarkably temperature-stable (watch Matt Bendall’s
video!)
Argh. Gaffe of the century! But you know what? Feeling stupid does
nothing but take us backwards.
Reflections
This wasn’t a mistake. It was a success. We should feel excited when we
find patterns, causes, solutions, even if we feel that we should have
realised months, even years ago.
Also, there are mistakes we make over and over and we get furious with
ourselves for making them once again. Fury only makes us more stressed.
Self-loathing creates a self-fulfilling view of yourself. A much better
reaction is to calmly work out how to reduce the mistake in future.
Another great reaction is to simply embrace it—you will make the mistake
sometimes, and it’s OK because there are plenty of other things you can
focus on to improve your diabetes management.
I called myself an idiot earlier in this post—because it’s something
people can identify with. Diabetes gives us plenty of reasons to feel
that way. But it’s not a healthy way to see yourself. I hope my gaffe
will help remind you that diabetes is about little wins each day,
rather than endless failures. Because even when there are seemingly preventable
problems like this one, we don’t have time to stop and think constantly.
There are other problems that arise from my skills and confidence—but
they’re stories for future posts.
