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...

Having Faith

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.

Faith Healer comic
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.

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...

It isn’t normal

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.

Is it normal?

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.

Whoopsie

I’m too smart for my own good.

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.

Diabetes Expo 2019

Well, I just attended the Melbourne Diabetes Expo. It was a strange combination of rewarding and mildly disappointing. But this wasn’t my first time so let me rewind two years.

I went to the same Expo last time it ran in 2017. As we all know, “diabetes” means “Type 2 diabetes unless otherwise specified.” Naturally, the expo made it clear it was for both types of diabetes. If you try to cater to both, you won’t disappoint the Type 2s, but it’s hard to get it right for Type 1s.

I hadn’t been to a diabetes expo before, but I had a good idea of what to expect. Talks aimed at Average Joes with diabetes. Stands by the usual pharma and biotech companies, showing off their latest products, and other stands promoting diabetic socks, pump cases, and what not. Nothing I hadn’t already found through thorough research on the internet.

But some part of me said, “Don’t be cynical, take a positive attitude. You often learn more than you expect at things like this.” So I went.

To be honest, it was pretty much what I expected. Lots of absolute basics, a large Type 2 focus, sitting through hours of Baby’s First Diabetes, but with the occasional thing that was new, insightful, or rather useful.

Don’t get me wrong about the stands. It was good to actually see and feel insulin pumps and pens and meters in real life. There were some unexpected stands too, like honey pops (useful), type 2 cookbooks (lame), and hearing and eye checks.

Despite the lameness I had to sift through, I felt it was useful. I was disappointed that there weren’t more advanced talks relevant to people with type 1, although I guess it’s to be expected.

But I tried to strike up conversations with other type 1 folks. A lot of them were similarly disappointed, but we clicked, exchanged stories, talked about what we had hoped to see. These weren’t the sorts of cynical people who pollute—er, that is, populate—online Facebook groups. I realised that one of the good thing about events like these was that it was idealists who would be likely to turn up and connect.

Oh, one more thing. I was at a “latest science in diabetes” talk where an audience member asked about the recent developments in inhaled insulin. The presenter said something along the lines of “well yes but I think we’re likely to see better results from the real science.”

I had to. I just had to grab the mic and say that actually I was using inhaled insulin and if anyone wanted to talk to me after the session I’d be happy to. The presenter was furious. A number of people came to talk to me later and were very interested and supportive.

In the end I was glad I went.

Two years later

So it’s 2019 now. Not much has changed. I went to the talk about low-carb eating hoping to get some gems on how to bolus, some recipe ideas, and how to manage eating out. Unfortunately all I got was a definition of the low carb diet, a comparison with the “recommended” food pyramid diet, and some studies showing that there was not much to show. Some of that stuff was interesting, I suppose.

Everything just has that tone of “mildly disappointing but kind of worthwhile.”

Except the talk about research. Now that was interesting. I had always thought that SGLT2 inhibitors must have some side effects. Wouldn’t they strain the kidneys? Apparently not. The research seems to show they are bloody good for you. Less cardiovascular problems, less kidney problems! In the case of certain kidney patients, there was a 40% reduction in the chance of kidney failure. What. The. Hell.

And there were a few other studies with extremely promising results. One of them (it sounded like “twinulin” but Google says that isn’t a thing) had crazy results for type 1 and type 2 patients. There had also been research into an actual oral insulin that could be absorbed by the gut.

I walked out feeling impressed and feeling there was a significant chance that we were on the cusp of a leap forward in diabetes treatment. However, I felt threatened that the years of blood, sweat and tears I had put into building my diabetes toolbox would be all for nothing if I tried out these new drugs. (Of course, that is a silly mentality. Really I should look forward to difficult, complicated things being thrown away.)

Actually there was also a talk about social media, which was mostly Social Media 101 (as I expected) but there were also a few personal stories that were touching and eye-opening.

OK, well maybe I’m being kind of unfair and the 2019 one was rather better.

The greatest difference between 2019 and 2017 was that “the establishment” was starting to acknowledge matters that people were taking into their own hands. Low-carb diets were acknowledged. DIY artificial pancreas tech was being acknowledged. Afrezza was being acknowledged. BionicWookie was there, as well as many other loopers.

I was better at chatting with people at the stands. I was much less um, stuck-up, than last time. I actually purchased a few things. 🙂

In my defence my hands were shaking

During the diabetes tech panel, someone happened to ask what the new inhaled insulin device looked like. I got all excited (and nervous) and it flew from my hands onto the floor. Way to go, Aleks. Anyway, I held it up and said “it looks like this!”

Then Renza (who was on the panel and has an awesome blog) said “I knew there’d be one in the audience.” (Supportively.)

One of the staff tried to get me over to the mic, but I was resistant. What would I say? I’m not good at off-the-cuff. Eventually I thought of something and went up. The gist of it was, “I’ve tried everything. The most important thing to learn is to know when something isn’t working, and then try something else.” Seemed to be well received.

After the talk I got a chance to talk to Renza. I feel a bit... undeserving—I don’t feel like I’m enough of a big deal for such respected, busy people (not to mention internet-famous) to have time to talk to me. But there you go.

All in all, I was quite happy I went. There are many things I’d like the organisers to improve next time, but I appreciate that it isn’t easy.

Afrezza Reboot

Well, as always I feel a bit embarrassed to admit when I’m not on top of my diabetes or have made a potentially bad decision. That’s how it was for a while recently. In a perfect world I would have written a post about it but, well, now that I may have figured it out it’s easier to admit what was happening.

xDrip has this useful History feature where you can see the average BG over a selected time period. I compared the weeks before low-carb with the weeks during low-carb. The average was almost the same. True, the low-carb average was a tiny bit lower. But not what I expected. However, my sugar stability was much, much better. Fewer, smaller spikes.

Why was it so hard to keep my sugars down? I suspected I might just have gotten lazy so I started working a bit harder.

Nope, something was wrong. I observed an interesting effect. There didn’t seem to be a “correct” insulin dosage. There was no sweet spot. My sugar would either go high and then plateau, or modestly rise and then crash later. Was it the protein? The fat? What was going on?

I pondered this for a few days. And then I had a lightbulb moment. When you eat a meal, your body does a liver dump. Well, it tries to. In a non-diabetic, their rapid insulin spike tells the liver to shut up.

So the insulin I was taking wasn’t really to cover protein or fat. It was to mop up the liver dump. But mealtime liver dumps are quick. So after that was dealt with, the tail end of the insulin (even the intramuscular stuff) would drag me doooown.

If I took less insulin, the liver wouldn’t get the “shut up” signal, and keep dumping for longer. So the intial dump would kick me up, and then things would sort of cancel out up there.

Suck that, diabetes

I know about this “shut up, liver” thing because it’s part of the theory behind why Afrezza makes dosing easier. So naturally, I immediately thought of Afrezza. I still had a stash of Afrezza. Maybe I ought to give it a go.

And so it began. My first meal-puff went fantastically. Blood sugar was almost immobile. Over the next few days I had a lot of great moments and a few less-great moments. To be expected. You can’t expect to get the hang of a totally different insulin straight away.

So, I’m nervous about it but pretty optimistic at the moment. Updates to come.

Staring me in the face

I expect this is a known psychological effect, or maybe it’s just me. But I think it’s a psychological effect.

When you have two options to solving a problem, and one of them feels out of the question, you can sometimes forget it’s still an option, no matter how bad the problem gets.

Take Type 2 diabetes for example. Most people are terrified of insulin injections, so they will choose diet/exercise/tablets and forget that insulin is an option... no, wait, they won’t. Bad example.

It’s more in situations without an inevitable ‘last resort’. For example, if a person hates the idea of a teacher’s wage, and becomes a lawyer or software developer but ends up unhappy with their job, there’s a good chance that it won’t even occur to them that they can change careers.

So here’s what happened to me.

Thanks to Lamictal, I shot up from being so crippled I could barely work, into an intense, high-stress job in the space of a month. An absolute miracle.

Due to the stress, I didn’t feel I could handle giving up the comfort of my favourite foods. Due to the fast-paced job, I couldn’t afford risking a loss in energy, cognitive function, mood, triggering epilepsy, or changes to my medication needs.

So low-carb was considered, and deemed absolutely out of the question.

Makes more sense than diabetes

Diabetes was pretty terrible. Teaching has the same effect on blood sugar as sporadic bursts of exercise—which for me are disastrous. Stress levels were up and down, and we all know that stress hormones are not easy to measure. My general routine was unpredictable. And I comfort-eated. Ate. Whatever.

Low carb had already been discounted. Didn’t even occur to me. I just got on with a roller coaster of bolusing and correcting and CGM alarms and crappy sugars.

This got worse and worse. Stress built up. Diabetes got harder which created more stress. I had a day here and there of extended exercise, each time making diabetes wash out for a week. Possibly worst of all, my intramuscular injections gradually became ineffective.

Low carb was still off my radar. I was trying to problem-solve some diabetes related thing with Bianca’s help (as frequently happens) and suddenly it hit me. Low carb was an option.

It became apparent that the status quo had become more out of the question than low carb. Impossible, right?

So, grudgingly, I switched. Having done it years before, I knew what to expect food-wise. And how limiting the options were for eating out.

Nothing bad happened. My cognitive function and energy levels did not decline. My epilepsy seemed to be fine. It’s a pain to cook and clean up, and food is much less fun. But in the last few weeks my sugar has stopped being so out of control.

I do feel that, had a new option become available, I would have jumped at it. But since low-carb was old and dismissed, it didn’t even register. Well, for quite a while, anyway.