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.

The Toxic Psychiatrist 2nd Visit

(If you missed Part 1, read it first!)

Back to my favourite psychiatrist. I was looking forward to it, believe it or not. I was looking forward to a chance to get help. (Seriously. I think Polyanna is my cousin or something.)

Back then, I had started Epilim and life was improving, and I was trying to deliberately be positive and motivated and take opportunities and change the unhealthy circuits in my brain that had accumulated over several years of broken life. So to a degree I was choosing to look forward to it, to be open-minded. But I was also just hoping to be looked after for once.

She was running late, so it was a perfect opportunity to make some small talk with the receptionist. I’ve never really known how to do that, so I was trying to practice. Getting past the social anxiety. Learning to enjoy it, learning not to overreact to awkwardness and how to handle it. And all that stuff that a lot of people seem to be naturally good at. I did fine.

Miss Trunchbull
There’s that staring contest again

The woman of the hour arrives and again invites me to sit in the unfashionable armchair. No “how’s it going?” or “how are you feeling?” of course. She doesn’t do that. Which is fine. It’s hard for most people to answer that question honestly anyway.

She asks me what I’ve been doing since I saw her last. I tell her that I’m trying to balance personal projects, meeting friends, and having down time, for instance playing games. But I also tell her that I prepared and gave a talk on my inhaled insulin, Afrezza, at a fantastic Sydney diabetes meetup, which was, for me, a massive achievement.

Nothing. No reaction. No engagement. If anything she seems unimpressed. Is it just me? Am I crazy, or is this really toxic behaviour for a mental health professional?

What’s her problem? Is it that I don’t have a job? Am I just another hypochondriac rich entitled white kid to her?

Then she asked me what I’d done that day. This was the best part of the whole appointment so I’ll save it for last.

Her whole style seems to be about dishing out “good old-fashioned common sense.” In a “kids these days! No common sense!” sort of way.

I watched a Judge Judy episode recently where a young man causes a car accident. She asks the kid to detail what happened and he said that he looked over his shoulder and saw that he had enough space, so he changed lanes. She said “well he hit you so obviously you didn’t have enough space.” Then she asked him what information he gave to the other driver after the accident. The young man was cagey and she asked “what did you physically give him?” He was still cagey but she forced him to admit it was a learner licence. So he was illegally driving on a learner licence. He justified that he was a good driver already. She prodded further until he admitted he had just failed a driving test. She found against him. In this case, I’m on Judge Judy’s side.

But that’s how the psychiatrist was treating me. I guess in her mind, I was treating my mental health the way that young man was treating driving.

She asked me how much exercise I’d done in the last week. I admitted that I hadn’t managed as much as I should. She threw medical conventional wisdom at me as though it were gospel. I need to get at least an hour every day blah blah blah.

She asked me how I was sleeping and I explained that diabetes interrupts my sleep regularly. “Well you should be getting at least 8 hours—[etc.]” Woman, don’t you think I know that? I don’t need a lecture. It was as if I told her I don’t sleep because I go out and party.

I don’t care that her tone was judgemental with a hint of condescending. (Although many in the T1D community would be shaking their fists purely for that.) Sometimes a bit of an old-school shakeup makes people wake up.

What I care about is the fact that the “common sense” was ignorant, close-minded and a few times, medically unsound or dangerous.

So here is the best bit. Make sure you sit down for this one.

“What did you eat for lunch?”

“Oh, I haven’t had lunch.”

“But it’s half past two!”

“Oh, well I didn’t feel hungry so I haven’t eaten yet.”

“You shouldn’t skip lunch.”

“Oh, I skip a meal if I’m not hungry. Sometimes I don’t have breakfast, sometimes I don’t have lunch. It makes diabetes easier to manage actually.”

“You can’t skip meals,” she said, very condescendingly.

“It’s what works with my lifestyle.”

“Having three meals a day isn’t a matter of lifestyle. It’s what everybody does!!

I dropped it as another one of those “I can’t win this fight” things. We moved onto other things and it went out of my mind.

When it was over, I really didn’t want to go again. But, the receptionist asked me to make a booking so I did, partly due to social conformity and partly because I was being mature and letting my head cool down before I made a decision.

Then I walked onto the street and thought, “hang on... what was that three meals a day thing?” Now I could give it the outrage it deserved.

vintage housewife black and white
We can have cake three times a day!

I’m reminded of those old black-and-white “how to be a good housewife” videos. Everyone (it is implied) has that nice family where the wife prepares breakfast and dinner and gives her husband a nice packed lunch. And irons his clothes. Some households are like that and that’s fine with me. But it’s 2019. How can people still have such a childishly simple view of the world where there is a model lifestyle and a person either strives for it, or is lost, sick, or deviant? And this isn’t some businessman or politician, we’re talking about, but a mental health professional!!

Seriously, she was shocked by my skipping meals, but merely displeased about my limited fish consumption.

Anyway, there I was on the street and suddenly it hit me.

“What if she told a gay person that being heterosexual was ‘what everbody does’??”

Not to mention that Muslims fast for Ramadan, Buddhists fast, and intermittent fasting was already popular at the time. To think I made her a few hundred dollars richer, for that.

Before the next appointment I got a call saying it would need to be postponed because she had a back injury.

Karma.

Also it got me out of having to call and cancel. 😀

The Toxic Psychiatrist

Britney Spears Toxic

Ah, I’ve been waiting to express my outrage about this one for over a year now. Here’s the story.

As you may know, for many years I had no idea what was wrong with my head. I desperately tried option after option, consulting with no less than 12 mental/brain health professionals. Some of them I could immediately tell were wrong for me, while others I gave a chance and got nowhere.

As time wore on, Bianca and I began to question our strong gut feeling more and more often. Surely I couldn’t be right and 10 professionals be wrong? (As it turned out, they were failing me big time.) Not to mention the fact that I have a strong tendency to see the best in people and give them a chance. If I felt they were useless, they must be really useless.

Toward the end of that journey, at roughly number 11, still desperate for help but now with a much better understanding of what was wrong with me, I asked my GP to refer me to a psychiatrist. Unfortunately the only one that he knew well was retiring, so he had to take a stab at a new one.

At her offices, things felt sort of... 80s, you might say, which was kind of normal for the area the surgery was in. The psychiatrist was a thickset woman, reminiscent of an old-fashioned headmistress. Friendly, but with a no-nonsense undertone. I definitely don’t have a problem with any of that, but it fits with what followed.

She sat me in a dark brown corduroy armchair and took a seat behind a desk. As usual, I brought a small folder of notes I had printed out both as reference material and outlining what I wanted to discuss. As with every other mental health practitioner I’ve seen, she clearly tried to steer me away from my notes—as if my own self-assessment were invalid; as if she were better placed to figure out what I needed than I was.

At that point it was not a big issue, but in hindsight (and these are not words I say lightly): Fuck you.

There were the usual “tell me about yourself” and “why are you here?”

And as per usual, there was no understanding or attempt to understand what life was like for me and what I had been through. These people don’t know what type 1 diabetes is like, and don’t want to know. It’s like they think we’re whingers. I’m willing to bet that people with phobias or addictions or trauma don’t have their stories ignored in the same way.

But with her, it was worse. It was horrifying. I told her I had type 1 diabetes. She said “you must have eaten way too much sugar.” I said that no, it was type 2 diabetes where diet was a major factor. No, she said. She had a relative with Type 1 diabetes.

I started “I...” and shook my head nervously. “Generally speaking...” She was insistent. Very insistent. I tried one final “That’s... not true” but it was no use. It was just like being in a staring contest where the other person gives you a look that says “you can’t win.”

And you know they’re right.

Fair enough. Maybe she was ignorant and judgemental about diabetes but was very good at helping people with mental issues. No, wait, (I thought,) maybe it was some kind of test. Maybe she was trying to gauge my personality. Maybe she wanted to see how I reacted under pressure. Maybe telling me what she was doing would defeat the purpose of the test. (cf. secret plan.) Either way, I backed down and forgave her.

Then, “why are you here?” I made it perfectly clear why I was there. Some of my mental health problems were due to my epilepsy. Some clearly weren’t. Some were due to trauma, some to everyday events, some due to my medication, and some due to diabetes. It was really hard to figure out what was what, to unravel the tangled web of really weird, complicated and sometimes unnameable emotions and experiences.

halp plz.

Cat tangled in string

Well that fell on deaf ears. As had been the case with many others, she acted like I had exceeded a word count that people go over when they are confused, when they are overcomplicating things. There was no “that’s a lot you’re grappling with, I’m very keen to help.” Nor was there “OK, there’s a lot to work on.” Nor was there “I’ve never dealt with this sort of thing before. I’m a little out of my depth.” Nor were there questions to try to understand better.

There was just an unspoken “ah... another one of those.”

There were some other procedural things, like what medications I was taking, family history, and so on. Then we got into her trying to “help” me. Am I eating enough fish a week? Am I eating enough vegetables? How much exercise am I getting?

Look, I appreciate it. A very common and very tangible cause of mental health problems is an unhealthy lifestyle. I may be arrogant that I’m already doing my best with everything, but I see the value in someone making me do a sanity check.

But then it got ridiculous. What kind of exercise do I like? I listed a few things including swimming. I explained that swimming is hard because of diabetes. I explained why. She tried to offer silly solutions like bringing a friend and having them hang on to my belongings, instead of actually addressing an issue that is really painful for me, namely the way diabetes gets in the way of things I enjoy. Solving practical issues is all well and good, but it will never change the fact that diabetes always has to be on my mind for safety reasons.

OK, she can’t be expected to know that about diabetes. Except I just told her about it. I literally just explained. Also, I had earlier explained why fruit is difficult to manage with T1D, but it went in one ear and out the other. I need to eat more fruit.

Then she spent at least 5 minutes umming and ahhing trying to think of local swimming pools. Oh, there’s this one, but you have to be a club member. Oh, there’s that one, no wait it closed down. Seriously, this went on for five minutes. I sat and smiled as she sat there wracking her brains for swimming pools.

I don’t pretend to smile. When I smile, it’s genuine. Being warm and patient and optimistic and trusting is just how I am. Unfortunately it doesn’t serve me very well when it comes to my health.

Time’s up, I leave, and think “that really sucked.” But then, as I do, I stopped myself and thought “OK, don’t give up after one visit. These things take time.” So I thought back to what was actually useful. Well, she seemed to know her way around medication, at least. Maybe she would be good in that sense.

Had fun? Read about my next visit here.

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!

All in the wrist

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.

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.