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.

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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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.

Ongoing stuff

So, Friday I took a day off from my day job to go out to Quincy, WA to visit the Quincy Valley Historical Society and Museum, a farming museum which the AR startup is doing an app for. It was an interesting trip and I learned some stuff, although mostly we were there to guide the filming of greenscreen footage that’s going to be part of the app.

Quincy reminds me a lot of Las Cruces, where I spent a total of 8 years as a college and graduate student, only it’s even smaller and there’s no university.

Anyway, Friday night I didn’t sleep particularly well, then Saturday we drove back and after a brief nap I went to a local Twitch streamer meetup and met a bunch of people. Which was a good time and I made a bunch of contacts, but unfortunately the combination of that with the previous day meant I was already pretty much at my spoons limit.

Then Sunday, because of the dumpster fire that is Daylight Saving Time, all those dirty spoons got thrown into my garbage disposal.

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Treatment progress

On the nortriptyline front, I’m up to 20mg/day and it’s feeling fine. It hasn’t solved my fibromyalgia forever (and after a day of typing and whatnot I’m still in pain, and my pressure points are still indicative of fibro) but it’s helping me a lot all the same. An unsurprising-but-nice thing is that it’s also vastly reduced my anxiety, which isn’t too surprising since that’s one of the on-label uses of this medication that I’m technically taking off-label. Does that count as a side-effect?

On the CPAP front, I’ve switched back to the nasal mask and it’s actually working pretty okay for me. I think the machine has finally learned to reduce its pressure because I’m a lot more comfortable throughout the night, although I still end up waking up at around 4 AM and taking it off so I can scratch my nose. Still, I’m generally feeling a lot more refreshed in the morning. I just need to get in the habit of putting it back on after I wake up and take care of the itching.

Also my cats have gotten used to it, which is nice.

Nortriptylene and CPAP progress

So I’ve been on nortriptylene for nearly two weeks now, and so far it’s feeling pretty promising. I’m still at the 10mg dose (I’m supposed to increase to 20 in a few days) and while it hasn’t completely solved my fibromyalgia so far (not that I’d expect it to), it’s definitely helped me out a lot.

In particular, while I still feel pain after a full day of work, it just feels like something that’s present and that tells me that it’s time to take a break from things, rather than putting me into extreme severe agony.

Basically I suspect this is what pain normally feels like to people who don’t have this disability!

I still have some level of fatigue in the morning (and much more later in the day) and I’m still needing to manage my spoons – that’s not something that is likely to ever go away – but even this early and at this low of a dose I feel like I’m heading in the right direction.

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CPAP and Nortiptyline

Only too late did I realize that trying to adjust to a CPAP machine while already adjusting to a brain medication (that has weird effects on sleep) means that I am once again doing things on hard mode. Oops.

So far I’ve had two nights with the CPAP. The first night I didn’t get any real amount of sleep while on it and ended up taking a nap after I “got up” in the morning. The second night I did a bit better when I stopped worrying about paying attention to my breathing, although that’s hard to do.

Probably the weirdest thing about a nasal CPAP mask is that if you open your mouth, the air gets forced out through it and causes a sort of reverse snore. And it feels really weird. So if I need to talk to a cat, for example, things go strange.

Anyway the lack of sleep has made me feel like I’ve gotten a pretty big setback with chronic pain stuff; the day before CPAP, I was feeling pretty good, and over the last two days my major chronic pain has come back all over and in a big way. I’d hold off on the CPAP for now except insurance will only pay for it if I average 4 hours per night over the next two months, and I feel like in the long term CPAP is much more important for my pain stuff than nortriptyline probably is.

If tonight doesn’t go better I’ll probably go without CPAP tomorrow night though, because I have to be in good shape pain-wise on Tuesday (since I have a couple of big tasks at work plus I’m getting a bunch of cavities filled in the afternoon).

Sleep study results

I finally got the results of my sleep study. Well, partial results, anyway. In-home tests can find either obstructive or central apnea, and complex apneas appear as obstructive. So, unsurprisingly, it determined that I have obstructive apnea.

Anyway, the good news about this (and it’s all good news!) is that I’ll be getting a CPAP machine, and modern CPAP machines are small, lightweight, self-adjusting (no need for a separate titration!), and also provide ongoing diagnosis. So after two weeks of sleeping with it, I’ll know if I have complex or simple obstructive apnea, and either way the treatment is a CPAP so I don’t really care to split hairs about what the underlying problem is.

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