Vicious cycling

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.

Bicycle pasta
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.

Keto Quiche

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

  1. Grease the baking dish with a little butter
  2. Line the greased dish with cheese
  3. Put the eggs, cream, salt, pepper, and herbs into a bowl and whisk until combined
  4. Heat a chunk of butter in a pan, and fry bacon, tomato, and onion
  5. Distribute fried mixture evenly in baking dish
  6. Optionally add cooked vegetables
  7. Pour egg mixture into baking dish
  8. Top with more grated cheese
  9. Bake at 180°C for approx 50 mins; keep an eye on it after 30 mins
  10. 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!

Trickle-me Almo

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.

You can imagine how much I love these puns

Dexcom rebatterying

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 contact
Second contact
Made in Switzerland!
Fully accessible
Terminals lifted

Getting them out

Helps to get them out
Those 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.

After all that 🙁

The Transmitter Saga

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.)

Welcome to Sydney!

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.

The Kitchen

Ow. My eyes.

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...

UNGGHHHHHHHH

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...