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.
This is something that has made low-carb a lot easier. It is what gets
me out of bed in the morning. It is literally one of my favourite foods.
Here’s one I prepared earlier
A friend with epilepsy who is on the keto diet for seizure control put
me onto an amazing very-low-carb “quiche.” The trick is to use cheese
instead of pastry to form the shell.
Basically you line a dish with cheese, pour over eggs and cream, then
put more cheese on top, and bake. Quick and easy and makes a big batch
that you can keep in the fridge.
Here’s the recipe:
Ingredients
Suits baking dish of approx. 28cm diameter.
butter
lots of grated cheese (tasty)
1 finely chopped tomato
handful of diced bacon
1/2 small onion finely chopped
Optional: chopped cooked zucchini, squash, cauliflower etc.
10 eggs
small tub (300mL) thickened cream
salt and pepper
generous amount of mixed herbs
Method
Grease the baking dish with a little butter
Line the greased dish with cheese
Put the eggs, cream, salt, pepper, and herbs into a bowl and whisk
until combined
Heat a chunk of butter in a pan, and fry bacon, tomato, and onion
Distribute fried mixture evenly in baking dish
Optionally add cooked vegetables
Pour egg mixture into baking dish
Top with more grated cheese
Bake at 180°C for approx 50 mins; keep an eye on it after 30 mins
Insert a knife into centre to check if cooked
It can rise quite a bit so don’t overfill the dish
And you end up with...
Well, this:
Somebody should bottle this and sell it
It’s firm and fluffy and is just as good when fridged and reheated.
I’ve been eating it for weeks and I’m not sure I could ever get tired of
it. Bon appétit!
A few weeks ago, Bianca and I were lost for what to do on a Sunday. We
happened to walk past the Melbourne Exhibition Centre (yes, the one of
Diabetes Expo fame) and looked inside.
“Health and Wellness Expo”. Pfft.
“Free entry”. Ohh... what the heck. If there was any chance I
could improve my health and wellness it would be time well spent.
Nothing better to do anyway.
We weren’t particularly surprised by what we found. There must have been
about 50 clairvoyants. Healing crystals, dreamcatchers, tarot cards,
aromatherapy. I don’t mean to ridicule these things; I think many of
them do work, just not necessarily by the principles that the proponents
put forward. And that’s OK, because the real principles are so complex
and subtle that science is hopeless at describing them.
Of course there are things that are downright dangerous, or nothing more
than making money off the gullible. They’re not OK.
Anyway, there was a much wider variety than that, such as saunas,
beanbags, gluten-free, massage, and vegan meat (pretty good actually).
I saw someone up ahead holding out a little cup of almond milk, and
having recently become an almond milk convert (it tastes like milk but
has hardly any carbs! Almonds are like unicorns I swear) I was on the
lookout for what was available.
It was good. Really good. So smooth. I had a nice chat with the lovely
lady who seemed to know the additives in my previous brand off by heart
and sold me on the benefits of this product. I’m not going to repeat the
spiel here, as the claims aren’t mine to make. Do your own research. All
I claim is that I think it tastes better than other almond milks I’ve
tried.
I think they’re going for the “liquid gold” look
It was a pleasure talking with her and she was so convincing that I just
assumed she was a salesperson. As it turns out, she actually started the
business, because of her own experiences with an autoimmune condition!
It’s called Almo and it’s becoming easier
and easier to find. It’s probably cheapest online but it’s stocked at
Harris Farm among other places if you want to try some.
I also got to try this Almo Creme stuff which is really nice.
Now, just
because Bianca and I like almond milk doesn’t mean you will, but if
you’ve never looked into it, almond milk is really low in carbs! But
make sure it’s unsweetened.
The adventure
We ordered two boxes of the stuff online, thinking they would last for
ages. (But we like it so much, our intake of milky beverages has
increased, so they’re going pretty fast.)
We made the order the day before we were due back, thinking it would
take a couple of days. Apparently delivery was attempted within a day.
We got one of these:
For once we actually weren’t home
Then the drama began. I logged onto the Star Track site, and elected to go and pick
the stuff up directly. I was told I would receive a message shortly.
... nearly a week passes ...
While waiting and waiting we eventually got fed up (or rather,
dehydrated) and bought a bottle from Harris Farm. Then another.
Anyway, after nearly a week I called up Aus Post. They tell me that my
request was submitted but not actioned, and that they would resubmit for
me and I should hear back the same day.
The next evening, I called again. This time they put a case worker onto
it! I didn’t know they even had those. Apparently the depot in Botany
was not responding to the requests and needed someone to get on their
back. Fine by me.
Another day passes. I get a very apologetic call from my case worker who
explains that she’s in another part of Aus Post in Melbourne and is
doing everything she can from where she is, and that she will ramp up
the pressure.
Later that day, and over a week after it all started, I got a call
saying I can go pick it up. If I can find it. It’s in the most obscure
part of an out-of-the-way industrial complex full of trucks. I nearly
got hit by a truck when I tried to reverse out of a wrong turn.
Then I got to the depot and waited about half an hour for them to find
my package. They were very friendly people. They had trans-friendly
posters on the walls. But the delays were ridiculous.
I shouldn’t be so excited about this
My first Almo box!! (Well, two boxes.) Bianca and I are giddy. I know
it’s silly. I guess it’s just fun to be part of an adventure.
As said in the previous post, after
Simon sent me a transmitter (much appreciated) that didn’t work, I
decided to try my hand at re-batterying my own.
All I used was a file, a small screwdriver, a razor blade and a hand
drill. I went to Bunnings to get the batteries (which they have
online)
but they didn’t stock them. So I tried shopping centres and chemists,
one of which had a very similar battery for $1.30. Defeated, I went to
Mister Minit which I knew would be pricey but I didn’t expect to be $36
pricey!
I had Simon’s as a guide. Here is a comparison.
Simon’s is on the right with the nice epoxy
Getting to the batteries
The “feet” of the transmitter fit nicely into a groove in this block of
wood.
Ready to go
After ages of filing, I finally struck silver.
First contactSecond contactMade in Switzerland!Fully accessibleTerminals lifted
Getting them out
Helps to get them outThose are the old ones. Not the new ones.That’s how much I had to file off
Putting it back together
Except for epoxy
Aftermath Epitaph
I did the voltage check which was fine. Finally I tried it out
and... you guessed it, it didn’t work.
Well, our 7 month work posting in Melbourne is over, and we’re driving
back to Sydney. Can’t wait to be home, back with family and friends.
Keen to start the next big thing. Relieved to get out of the cramped,
noisy, smelly apartment we lived in.
Of course, everything goes wrong.
Once we’re on the extremely busy highway something dangerous happens
and we have to pull over. With trucks racing past at 100km/h I climb
over the passenger seat to get out.
After that, the car won’t start. Flat battery. Call AAMI. We’re not
covered for roadside assistance. I ask if we can upgrade. We can, but we
won’t get roadside assist for two weeks or something. (Lucky you’re with
AAMI!) Walk to a petrol station. No batteries. Luckily highway incident
response pull over and jump-start us and we head to the nearest battery
vendor.
Stay in Albury overnight. Dexcom transmitter dies in the middle of the
night. NOT GOOD. WHY NOW, WHY HERE?
Being below 6mmol/L can be a disaster for my epilepsy. Being high all
the time isn’t good either. So, testing my blood glucose every 45 minutes it is.
$500 for a new transmitter, no thanks. We contact Simon, the legend who
replaces the batteries in Dexcom transmitters for free. He offers to
Express Post one so we’ll at least have it once we get home. Thankfully
it’s there on time, and what a beauty. Lovely transparent epoxy.
There’s half a D up the top there
Guess what. It doesn’t work. I keep getting a “raw_data: 0” error in
xDrip. So I try everything.
Simon is at a loss. I update from my slightly modified version of xDrip
to a fresh install of the latest version. Same error. I try a different
phone that worked in the past. Same error. Simon is scratching his head.
He’s never seen the error. Google has never seen the error except in
xDrip+’s source code. Why is all this happening to me?
Every. Single. Reading.
No CGM. Testing constantly. High a lot. On top of all the moving stress,
this is really straining my epilepsy, which is really making life very
hard to bear.
It’s the weekend, so whether I order a proper Dexcom transmitter, or
have Simon send a new one, it won’t arrive until Monday. Lightbulb! I
can re-battery my own transmitter! I go and do that.
Time for some DIY
Well, that was a fun experience, which I will save for my next blog
post.
Did I mention I was getting the same error?
But guess bloody what. This new transmitter doesn’t work either. THE
SAME ERROR?! I ask on the xDrip+ Facebook group. No luck. I change
sensors twice as well. I have changed every component in the system
except myself.
I am so fed up with Dexcom. Having tried a sample of the Libre before,
I know that I like the size and it’s much easier to insert. I have
wanted to try the Miaomiao for a while now,
but I kept putting it off because of it not working for me, plus that
apprehension about getting stung in the first few weeks while I learn
its quirks.
Finally I have a great excuse to take the plunge and try Miaomiao. I
order one and just give up on my Dexcom until I get the Miaomiao.
Back to testing all the time.
But in the spirit of things going wrong, Bianca’s sister goes through a
rough break-up and needs somewhere to stay. (Not that I mind her
staying. It’s the break-up and the logistics that suck and are stressful
for everybody.)
And worst of all, my epilepsy symptoms are worsening again.
(Here’s some more fun. My BG meter battery dies. I replace it. The new
battery is flat. I replace it. THE THIRD BATTERY IS FLAT. I replace it.
The fourth one works. I hit a pothole with my bike and it becomes
temporarily unusable. One of my good friends with epilepsy has two
tonic-clonic seizures. My dad’s business phone line burns out and
there’s no internet. And I can’t seem to get a hold of Star Track for a
week to find out where my almond milk delivery is.)
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.
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...
