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Gabapentin, day 1

So, yesterday I finally got my prescription for gabapentin/Neurontin, as another attempt at managing my fibro symptoms. Took my first dose at 9 PM, and felt very tired and dizzy by 11 PM. Then still managed to not fall asleep until around 3 AM (I was definitely wide awake at 2, and my smart bed thing says I didn’t fall asleep until 3 so that seems believable).

I slept pretty okay although I had vivid dreams about unpleasant stuff, as always seems to be the case when my neurochemistry is being tampered with.

Woke up at 8 AM, couldn’t actually peel myself out of bed until half past 9, and I felt wobbly/dizzy/tired all day.

Pain was okay in the morning, but at 2:40 PM or so I had a flareup. It cleared up with a snack, though, and I kinda-sorta managed to get some actual work done, ish.

Went home at 6, had dinner, not sure where the past two hours went but I’m really tired and sleepy right now and also flaring like a matroncopulator, and it’s time for my next dose. Maybe I’ll sleep better/longer tonight and feel better tomorrow.

Bleah

So, the first two dosage tapers on my nortriptyline (40→30 and 30→20) went off without any trouble, but going down from 20→10 was really hard, to the extent that I decided to go back to 20 and keep using it for now. Basically, I had massive SNRI withdrawal symptoms, and also ended up being in severe pain all over. After two days of that I decided that maybe the nortriptyline is doing something for me after all, just not as much as I need it to, and went back to 20mg/day. I’m still feeling pretty hecked up from that so it’ll probably be a couple more days until I’m back up to where I was before.

Supposedly it’s okay to take both nortriptyline and gabapentin, so maybe I’ll try combination therapy once I’m back to my previous homeostasis (which was livable but not great).

Meanwhile, I really hope I’m able to do a song this weekend… it’s a gift for someone and I need it to be done by Monday, and I just plain haven’t had time to work on it.

Finally heading home

Wow, I’ve been traveling for most of the past week and a half. Aside from a brief stop back in Seattle between IndieWeb Summit and visiting San Francisco for family gatherings, I’ve mostly been away from home since June 28. Yikes.

I didn’t really get to see a lot of friends on the San Francisco side of things (although I had some good times with my brother and my friend Mark) but that’s okay, since I got a lot of stuff done on Publ. Or, specifically, on Authl, the authentication layer, and the Publ integration with it. I have sign-in by email, IndieLogin, and Mastodon working! I will also probably add direct auth for IndieAuth at some point, now that I know how easy it is to implement an OAuth basic authentication flow. Hopefully soon I’ll have friends-only entries going up on this site!

Pain-wise I’ve been doing a lot better. I’ve been tapering off the nortriptyline, but I’ve been taking magnesium supplements. I still hit a crash point in the evening pretty easily, so it’s not like this has, like, solved everything, but it’s at least doing more for me than the nortriptyline alone was. I’m currently at 20mg and taper down to 10mg tonight, so this is where I’ll probably start to see if it really was a placebo early on.

Gender-wise, something rather interesting has been happening this trip: I’ve been going into the men’s room as usual (because when I travel and am in “boy mode” clothing I don’t want to cause a panic), and pretty much every time, someone’s taken it upon themselves to point out that I was in the men’s room and redirected me to the women’s room. At the same time, I still keep getting “sir"ed a lot, although I don’t know how much of that is people changing their mental alignment for me after they hear my voice. (Probably a lot.) I don’t feel like my appearance has changed at all over the past year, so I dunno what’s going on there.

Also gender-wise, a lot of people have been respecting the use of she/her pronouns for me, and that just feels… off. Still. I think I’m back to thinking of they/them as my primary pronoun. Honestly, the main reason I switched to she/her was because if I was requesting they/them, people would just treat it as unspecified and still default to he/him. I think my way of specifying pronouns is going to switch to "they/them, but she/her is fine.” Because if someone’s going to misgender me I’d rather it go to the femme side of things.

And a really cute thing happened at my nephew’s 1st birthday party: Camille, one of my nieces (who just turned 6 yesterday), wanted to get to know me better, and the first question she asked me was, “Are you a he, a she, or a they?” And I sort of fumbled over things and I eventually said “it depends but ‘they’ and she are ‘fine.’” Anyway, I wonder where she picked that up from. Wherever it was, it fills me with hope for the future. It’s also what got my mind grinding away about, like, which situations call for which pronouns. I think generally it’s they/them for folks my age or younger, and she/her for folks who are stuck in their ways regarding “proper” English.

Anyway, I guess that’s all for now. Unless something else occurs to me in the next hour fifteen minutes, apparently before my flight boards.

Edit: oh yeah, I think I need to switch to a backpack as my only conveyance. They’re kind of cumbersome for keys and wallet and stuff but purses are heavy and lopsided, and having both a backpack and a small purse is really awkward. My current backpack is great for just carrying my laptop to work but it’s garbo for actually organizing all my needs. My larger purse carries my iPad and all my other regular needs but it hurts my back after a whole day of using it. Any recommendations for better backpacks (ideally ones which are femmy and have room for an iPad, a laptop, some sketchbooks, and makeup et al) would be appreciated.

Edit 2: oh and another thing: fuck all the plastic straw bans, seriously. I’m gonna start just carrying my own plastic straws with me everywhere. I swear, people see one injured sea turtle and suddenly all people with disabilities and sensory issues just get completely thrown under the bus…

Edit 3: oh god only 4 weeks until my next big trip why is everything happening all at once

Feelings

So, the last few days have been feeling a lot better overall. I’m not sure how much of that is reducing my nortriptyline dose or how much is because I’ve been taking magnesium regularly. But either way, I’m just like… in less agony. My wrists still hurt most of the time, especially after I’ve been working for a few hours, and I’m still driving to work more often than I’d like, but all in all I’m feeling, I dunno, better?

I was in a pretty dark place about a week ago and now things are just feeling like how they are on average for me in general, so to me that’s a pretty big improvement.

This weekend I’m going down to Portland for IndieWeb Summit and I’m looking forward to it. Hopefully I can improve my understanding of the current ecosystem, and maybe make some contributions to it which are important to me. In particular it’ll be nice to chat with Aaron and Jamey about our respective areas of overlapping interest, and talk everyone’s ear off about Publ and what I’m trying to do with it. Maybe I can even get others to want to contribute to it! Also definitely looking forward to meeting Jacky, Darius, and everyone else I’ve interacted with in IndieWeb stuff!

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Stuff, and things

Last night I had another mini-spiral, brought on by making a joke in someone’s chat that didn’t land at all well. Which set off a cascade of bad intrusive thoughts. But I’m over it now.

I did decide from that to cut down on the spaces I’m chatting in. I’m spread too thin and need to focus my attentions on the things that are important to me, rather than the things that simply take up time.

Today the Dove Self-Esteem Project posted another Steven Universe short, this one about social media, and it reminded me that I’m long-overdue for cleaning up my Twitter follows. Given that I have, um, rather a lot, it’ll take me a while to KonMarie my way through them, but I think it’ll be worth it.

This also comes back to a lot of what I’m dissatisfied with in social media and modern communication these days. Everything’s about instantaneous updates and push notifications and micro-posts and conversations and so on. It’s a big reason why I’m not a fan of ActivityPub. It’s also the part of the IndieWeb focus that I’m less thrilled about (granted, IndieWeb is about a lot of things, and it’s not like I have to participate in every part to still make a meaningful impact). I keep saying how someday I’ll get around to writing a blog entry about impedance mismatches between what I like about blogging and the ActivityPub/Webmention/etc. world. This isn’t that entry.

Anyway, this is the… third? I think? day of my nortriptyline reduction. Which is to say I’m still at 30mg. My doctor agrees that we should try something else. Gabapentin will probably be the next thing I try, since it’s something that a lot of my spoonie friends have said works well for them (with caveats). I probably won’t be starting on that until August, though; it’ll take me a few more weeks to taper off nortriptyline, and then I’ll be doing Song Fight! in Madison (and hopefully not being in complete agony between the travel and the playing guitar all weekend). Meanwhile I think the magnesium might be helping as well.

Tonight I did practice a bunch of my Song Fight! material and actually managed to play for a decent amount of time without suddenly finding myself in agony. Which was a nice surprise. So I’m feeling a lot more confident in being able to play a full set in a month. And meanwhile I’m still doodling around with music for games and stuff. So maybe this is a good sign of things to come.

I guess I’m feeling cautiously optimistic for now. Which is better than how I felt two days ago, I tell you what.

Improvement

So last night I kind of hit rock bottom, in that I was incredibly depressed and ruminating about every single mistake I’d made in life and so on. I had a good cry and went to bed at 10 PM (and didn’t use my CPAP because my nose was all stuffy), and then the next morning woke up at 6 AM, still feeling kinda like crap, and I stayed in bed until 7:30. But when I got up I felt better, and I ended up going to the grocery store at like 8 or so and bought stuff for making a decent breakfast for once.

Today was basically a self-care day, and I think between having reduced my nortriptyline dose, having gotten a full 8 hours' sleep, not having used CPAP, and having been taking magnesium supplements, well, at least one of those things helped out. And today I was… well, not pain-free, but lower pain than I’d felt in a while. This afternoon I ended up taking a brief walk and managed to go a lot further than usual, too, although it was still only like a mile total. But I didn’t feel completely worn out by it.

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Nortriptyline etc.

Early on when I started using nortriptyline I seemed to be having some results but I also admitted it might be a placebo. Over the last four months since then it’s become more and more clear to me that it isn’t actually helping me with anything at all.

It’s supposed to make me sleep better but my sleep is just as restless and terrible as ever.

It’s supposed to help me downregulate my pain but if anything my pain response has only gotten more severe.

I’m also dizzy and tired all the time, and have pretty much constant headaches.

I thought maybe it was time to increase my dose, so I did a bit over a week ago. And the last week has been even worse than it was before I started on nortriptyline to begin with.

So, it’s clearly not working for me, so I’ve started to taper off of it. Probably really bad timing for it what with IndieWeb Summit next weekend and then a week of visiting family immediately after, but I’ll still be on a dose of it during that (I’ll probably step down by 10mg/week).

It’s frustrating that this hasn’t worked out, and I was really hoping to have something that works for me by August but hopefully I’ll figure something out.

Over the last few days I’ve also started taking magnesium supplements again; I remember it helping me somewhat with anxiety a few years ago, and there’s considerable research which shows that it’s actually fairly promising for some. And between reducing my nortriptyline dose and starting back on magnesium, I’m feeling somewhat better today, at least, although that could very well be placebo effect combined with the fact I did basically nothing yesterday.

I want to be able to get back into doing the stuff I love doing. I miss making comics and being able to play music and even being able to be even vaguely functional at work. I’m determined to find something that will let me get my life back.

Support networking

I’m in the midst of a really bad fibro flareup lately, and am burning through my sick days at work pretty quickly. It’s frustrating and I need a way out, and something else that I can do as sustainable income.

I’m in a bunch of differently-intersectional support circles, and I’ve noticed the following:

Disability circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my profession entails)

Technology circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my disability entails)

The thin segment of disability+technology together: Doesn’t have any answers either, just sympathy and relatable experiences with not knowing what the hell to do

I keep asking in technology circles to see if anyone knows other jobs that would use my brain without needing to use my body and I keep on having to grow the list longer and longer with preemptions. No, I can’t go into management; I’m not good at coordinating other peoples' moving parts and it’s not what satisfies me as an engineer, and the brain fog from the pain makes this not a thing I’m likely to be able to get good at. No, I can’t go into teaching or training; that has even more requirements and rigidity in terms of my scheduling and I cannot do anything that requires that I be available at precise times on specific days.

I ask in disability circles, and there’s another, different list; no, I can’t use voice recognition software to program (not while there’s shared open-plan workspaces or I’m working in languages which aren’t suited to it – and I usually don’t have a choice of language). I still can’t go into management; it’s a completely different set of skills and not a natural progression. I already have a good ergonomic setup, both at home and at work. And employers don’t look too kindly on me smoking weed all day.

And in the intersectional circle, the only response I ever get is: “I have no idea, let me know if you figure something out.”

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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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