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.
fluffy rambles (Fibromyalgia)
Rambles that are fluffy, by fluffy
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.
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.
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.
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).
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.