Current sleep/pain/etc. checkin

Let’s see, where am I at right now…

  • Sleep: I got a weighted blanket on Meh. I’ve slept with it two nights. First night my sleep was aborted because of a… thing, second night I slept pretty well under it and woke up sore in the morning as if I’d been lifting weights for the last several hours. Interesting.

  • My new CPAP mask has been working pretty well for me. Although somehow I managed to not only take it off but take it apart in my sleep last night. Wat.

  • The… thing: I was feeling a mysterious pain in my left leg and hip starting on… Tuesday, I think? and it was getting worse and worse, and felt a lot like the DVT I had back in November 2017 which threw a clot and turned into a pulmonary embolism which wasn’t exactly a fun experience that I have any interest in repeating anytime soon. So I went to the ER to get it checked out, and it turned up… nothing. So, good news, no DVT. The doctor suggested I just take it easy for the next few days, which I am trying to do, and oddly enough I’m feeling a lot better, go figure. Also I’m glad I’m with Kaiser because the whole thing only cost me $15.

  • But it’s hard for me to take things easy because I want to get my home clean, because my birthday is coming up soon and I am intending to host a completely unrelated pizza party at my home. (Incidentally, if you are in the Seattle area and are interested in pizza and you think I know you well enough to let you into my home, let me know and I’ll maybe extend you an invitation to the party!) Fortunately a friend is coming over tomorrow to help me out with the cleaning stuff (for which I am incredibly grateful!) but I am oh so very tired. So I mean I’m taking things easy at the moment, but I’d rather not.

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The current state of the fluffy

I guess it’s been a little while since my last post about the unending tire fire that is my mental state. I’ve been yo-yoing a lot, but here’s a summary of where I’m at right now:

CPAP: I’m back on it, trying some different things to make it more useful. The main problem seems to be bad mask fit, so tomorrow I’m going in for a proper mask fitting (rather than the half-assed thing the DME vendor did during the training session). Hopefully that will help.

Nortriptyline: I’m steady at 30mg/day, and have started taking it earlier in the evening, which has helped me with actually being tired when I need to be.

That weird failed drug test: Still no idea what happened with it. As one followup to it I had another diabetes screening (since that’s one possible cause of a false opium positive) but that came back fine (normal A1C and nothing out of the ordinary with my blood sugar), so that’s one less thing to worry about at least.

Day job: Still feeling like this is a bad match for me. Coworker is trying to assure me that I’m doing fine and trying to be helpful at getting me up to speed on the stuff I need to understand, but my brain refuses to play along.

AR startup: Going pretty well, I guess? I’m not doing a lot of active work for it but I’m glad to help out where I can.

Social life: I’m feeling much more withdrawn from my usual activities and am still on hiatus from most of my meetup groups. Ed is no longer hosting karaoke so I’m back to doing my drawing group every week. It’s going just Okay but I mostly use it for hanging out with a handful of folks I like. With a couple of those folks I saw Detective Pikachu the other day, which I enjoyed but I still have thoughts about. The monthly “smol games” group I’m in is still great though, even though I’m not actively working on any games (but I love seeing what other people are doing).

Music: Still plinking away at stuff. Also I really want to be able to attend Song Fight! Live, which is in Madison this year, but planning travel for it is a bit onerous. With music production I keep on waffling between “this stuff I’m making is pretty good, actually” and “ugh this is garbage.” So, same old, same old.

The ongoing MSG discourse

It seems like the pro-MSG camp is really ramping up their Discourse again lately, and it’s getting really frustrating.

Yes, it sucks that MSG sensitivity was labeled “Chinese restaurant syndrome.” Yes, it is probably the case that a lot of supposed MSG sensitivity was psychosomatic and due specifically to that name. And yes, glutamic acid does exist in a lot of things naturally and does in fact contribute to the “umami” flavor. I don’t disagree with any of those things.

What I do disagree with, however, is the mischaracterization that everyone who has an MSG sensitivity is just faking it or being “racist” or whatever, with the same strawman “gotchas” like “Did you know it’s also in Pringles and Doritos?!” (Yes, I do. It was Doritos which first gave me a reaction, for that matter. Long before I’d ever heard of MSG or “Chinese restaurant syndrome.”)

It turns out that there’s a high correlation between MSG sensitivity and fibromyalgia. And like many things that cause fibro problems, it’s not a single isolated incident that causes problems, but an accumulation of issues. If I have something with a low-ish amount of MSG on its own, I probably won’t have a problem. But if I have something with a lot of it, or if I’ve had it several times over the course of a week, I will have a problem and it will ruin the rest of my day.

And yes, glutamic acid occurs in a lot of things, but not bound to sodium and not in the high quantities that it occurs in with processed foods!

Several studies have shown MSG to be safe for the general population. And I do not doubt that it is. But these studies don’t include people with nerve disorders like fibromyalgia or epilepsy, or with a general history of migraines or the like. MSG actively amplifies the action of the pleasure centers in the brain. Fibromyalgia’s main issue is an inability to downregulate nerve receptors. Can you possibly see how this might cause a problem for some?

These fucking thinkpieces completely ignore the very real problems that a lot of people encounter, and also encourage people to actively put MSG into their food and not disclose it to be a “gotcha” for people with problems.

It’s like putting gluten into the food of someone who has celiac disease because of the backlash against fad gluten-free diets.

It’s like giving someone sugar-based Coke when they ask for diet, because they think it’s funny. Or giving someone diet Coke when they ask for normal, because they think they should “lose some weight.” Both are disastrous for diabetics who have planned their glucose intake for the day. (And incidentally, artificial sweeteners are also a major migraine trigger for me.)

It’s like “testing” someone’s stated food allergy by putting that thing in on purpose. Or not worrying about cross-contamination, or thinking, “Oh, it’s only a little bit.” Which can cause people to die or at least have a very bad time.

Don’t FUCKING do that.

Generally: if someone has a food sensitivity, believe them. Even if you think it’s made up, there’s no harm in believing them, while pretending you know better than them for their own issue can be incredibly harmful. Even fatal.

Progress resumed?

So, just an update from my last bit on discontinuing my CPAP. I feel like I’m back to where I was before the CPAP started causing problems, and I’m also up to 30mg of nortriptyline and that’s feeling fine. I also heard back from the sleep clinic today and while the doctor still hasn’t had a chance to go over my sleep study (I guess she’s been out of the office for some reason) the clinician agreed that I should stay off CPAP for now if I’m feeling better without it.

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Feeling pretty darn great

So yeah the last um… two months have seen my fibromyalgia getting worse and worse, and my sleep getting worse and worse, and my pain getting worse and worse, and me just plain feeling like garbage and falling apart and constantly falling asleep throughout the day.

I still haven’t heard back from last week’s in-lab sleep study, but finally I decided enough was enough and two days ago stopped using my CPAP.

Two days ago I thought I might have to cancel all my weekend plans. Today, however, I felt absolutely fantastic, and did those plans and then some. And I still feel fine.

I am pretty sure the CPAP has been doing more harm than good, and I need to make the sleep doctor understand that while one metric (AHI) was going down, it’s only because the more important metric (amount of actual sleep managed) went down moreso.

Like, yeah, I wasn’t suffocating in my sleep, because I wasn’t sleeping.

Anyway. Tomorrow I will probably stream the iPhone battery replacement at, say, 2 PM PDT; if you want to see me possibly destroy the only phone I have which works properly, follow my twitch channel and “ring that bell,” as all the YouTubers say.

And I hope that with this newfound state of feeling pretty okay I’ll be able to start making music and comics (and therefore streaming!) more regularly again.

Progress

It’s April 1, and nobody seems to have noticed the little joke I put on my site, or at least didn’t react to it. Which is fine, it was mostly a last-minute commentary on web UX patterns and so on.

(If you’re seeing this in the future, I added a GDPR compliance popover that prompts you with, “This website uses cookies to remember if you’ve clicked this button,” and a button which reads “I clicked it.”)

Anyway! It’s been a few days since my last post and I’m feeling somewhat better right now, so I’d might as well share what’s changed.

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Whatever happened to progress?

Ever since my diagnosis I was doing so much better, because I was able to practice self-kindness. But over time I’ve been slowly ramping up on doing more stuff, and now I’m back to trying to do all the things, and the amount of time I can do all the things gets shorter each iteration. So now I’m back to being in pain and being frustrated and feeling ineffective at everything.

I’m not sure if the medicine isn’t working after all or if I’m just expecting too much out of it; it’s probably a bit of both.

There are so many things I want to be working on but I’m just too tired to do any of them. I haven’t worked on music in a while – when I was so looking forward to getting back into streaming – and I’m coming up with things to do on Publ faster than I’m actually doing them, and am only really focusing on stuff that directly benefits the day job. And forget about comics, even though I really want to work on Lewi and a Unity Book 3 story.

I’m tired of being tired, and it’s useless to feel useless. I need to remember self-kindness.

Backslide

So, whatever positive effect I’ve gotten from the nortriptyline isn’t enough to make up for my current baseline pain levels. At least I’m able to get out of bed again (unlike a week ago) but holy moly do I fall into agonizing pain after not doing a whole lot. This weekend I wasn’t even capable of doing my usual 3-to-5 miles of walking a day, and I’m thinking tomorrow I might end up having to take a bus or even a Lyft to work. Very frustrating.

Also, lately I’ve noticed that the extra weight of my iPad in my purse is taking its toll on me. I should probably switch back to using my backpack as my main conveyance; it’s heavier but at least it’s symmetrical and puts the stress on my back rather than my shoulder and neck.

On the plus side, I’ve finally gotten my CPAP working well enough for me. I ended up finding a decent video on how to adjust the nasal pillows and those have turned out to be much more comfortable, given a second chance. The face mask ends up being too disruptive for a bunch of reasons (the slightest movement makes it leak around the sides and I have no way of scratching my nose without hecking the fit up) and I somehow managed to lose the nasal mask (which was nearly as bad as the full mask anyway) so the fact that I’ve gotten the one I’m “supposed” to be using to work reliably and comfortably is nice.

I still feel like it disrupts my sleep somewhat, though. I hope that’s just a matter of something I Need to get used to. Hopefully I’ll eventually start getting reliable deep sleep on it once I’ve fully acclimated.

Anyway. Being up this late and typing a blog post isn’t exactly helping. But I figured an update was in order.

Nortriptylene day 4

Are these updates getting annoying? I figure that the point of having a blog is to be able to do bloggy stuff again, and if people only want to subscribe to Bigger Things they can subscribe to the category-specific feeds on my site or whatever. Or they can skip/skim these entries.

Anyway.

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Day 2 of Nortriptylene

I took my first dose Monday night, and I had some incredibly intense dreams, and I was very aware that I was dreaming but kept on switching between like six different parallel threads, and was also very aware of my various apnea events. I was sort of awake and asleep at the same time and wasn’t really sure what was a dream and what was reality.

All day Tuesday I was drowsy and in a fog, and did absolutely nothing with my day except basic things around my home. Fortunately, it was also a day off because of the snowpocalypse.

I was kind of worried that my second day on it would be much the same, but aside from feeling vaguely like I was stoned all morning, I made it to work just fine (although I was in sort of a zombie mode on my way there), and then during the day I actually had a fairly productive day. In particular, I finally looked into modernizing the lab’s website (which was originally running Movable Type, just like this one), and realized that a quick-ish path forward would be to use Publ. However, the lab’s site had a lot more hackiness with templates and layout than my own one did, and I quickly came to the conclusion that the best path forward would be to finally implement better support for pure-HTML entries – so I did.

So far I’m not finding any major reduction in my pain levels (and if anything I’m noticing the pain I do have much more acutely) but I mean I’m only at the starting taper dose.

I’m getting a couple of cavities filled tomorrow. I’m not looking forward to finding out how that interacts with this current mental state.

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Various life/status/etc. updates

So, Seattle’s been basically shut down for most of the past, oh, week and change, thanks to the snow. People did overreact to the news of the snow (did they really need to stock up with a month’s worth of bread and milk?) but the various shutdowns do otherwise make sense; Seattle is very hilly and when it snows it gets icy and slippery. And some caution does make sense for having a nonperishable food supply, since power outages are a thing. The really remarkable thing is just how much snow we’ve gotten this year; most years we’ll get none or just a light dusting, or maybe we’ll get one or two snow days when it gets especially bad.

But anyway. Despite the shutdowns, my doctor’s office was still open today (thankfully, although unsurprisingly as they have an urgent care clinic so they make plans to stay open as much as possible). So I was able to do my appointment where I finally got to deal with my various medications for fibromyalgia (as well as finally getting a new prescription of estradiol).

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Shelving

When you are born, you are given a shelf to put things on. The shelf is angled away from the wall a little bit, but that’s okay, because the things you put on it are boxes and they don’t slide around too much.

But as you get older you’re given more things to put on the shelf. And one of them is a bit round.

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I have fibromyalgia.

So yeah. This explains a lot about my chronic pain issues – and a bunch of other things.

It explains my IBS and anxiety.

It explains my sensory overload.

It explains my chemical sensitivity.

It explains my need to manage my “spoons.”

It explains why drinking alcohol makes me hurt all over.

And it also explains how I can move forward, and I’m actually already on the right track.

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