Whatever happened to progress?

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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.

Nortriptylene and CPAP progress

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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

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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

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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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