Hm, it’s been a while since I’ve posted anything of substance. I guess I could check in for those of you who still read this for whatever reason.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).