Not that anyone would ever want to be in chronic pain or anything, but holy fuck am I tired of being in it.
It’s time I sling the baskets off this overburdened horse
Sink my toes into the ground and set a different course
Cause if I were here and you were there
I’d meet you in between
And not until my dying day, confess what I have seen.
— Phish, The Horse
I’m finally doing something I should have done at least a decade ago: I am no longer going to try to be a software engineer professionally. I’m not sure what’s coming next, but hopefully it’ll be a much better life for me.
So, I was worried about having “long COVID” and/or protracted amounts of fatigue after this, and, unfortunately, that’s come to pass. I had pretty bad fatigue leading up to the respiratory symptoms, but in this week since the worst of the cough subsided, it’s been even worse. I’m constantly tired and fatigued and I have a bad headache that just won’t go away, and I’m barely able to do things that I need to do, much less the things I want to do.
This past weekend I did end up assembling the drum kit like I said I would, and that took a lot out of me. I played the kit for a few minutes and it was more than I could really handle. Then I decided to work on some other music, and I could barely press down on the strings on my bass, and had to stop after just a couple minutes. I tried playing guitar instead, and that was just as bad.
And the next day my body felt like I’d run a marathon or something.
Two weeks since my last ketamine infusion and my anxiety is… present, again, and my chronic pain never went away at all but now I’m feeling a lot more aware of it.
I went back and tried Adderall again and it didn’t mess me up, although it also didn’t help me like it did the last time I tried it. But neither Adderall nor caffeine are messing with my blood pressure or increasing my anxiety, so I’ve reopened the conversation with my doctor regarding other meds for ADHD. In particular, I asked about Dexedrine and Desoxyn. Both of them seem promising at the dosages I’m looking at, although my insurance won’t cover Desoxyn (which is unsurprising, there was a TV series about it) so we’re trying Dexedrine first.
Regarding chronic pain, my doctor went over my chart and he noticed that we never really did anything about my high triglycerides, and then he had a thought: what if my high triglycerides are contributing to my fibro symptoms? Doing some cursory literature search found that it’s plausible, at least, so I’m also going to start on Fenofibrate to lower my triglycerides and hopefully get my body in some sort of balance there. He’s also ordered some more labwork to see if I have any gaping vitamin deficiencies.
Have I mentioned how much I cherish this doctor? Of all the doctors I’ve seen, this is the only one where I feel like he actually listens to me, doesn’t talk down to me, understands that I know my body and have done my reserach, and is willing to try things to attempt to treat these complex, deep-seated issues that have caused me problems for the past 25-odd years. It’s a lot easier to be patient as a patient when the healthcare provider treats me with respect like this.
He’s definitely a rare breed.
Ketamine therapy was very interesting for me. It helped me with some things, didn’t help with others.
Yesterday’s infusion left me feeling a lot more wobbly than usual today, but it was also a huge increase in dose. I ended up going to Taco Bell for lunch since it’s the
only place within walking distance (EDIT: not actually the only place in walking distance but the quickest and easiest option for food near my home that I don’t have to prepare myself), and I decided to get a lunch combo, and in my haze I decided to make my drink Mountain Dew Baja Blast, which is rather high in caffeine.
So, on the minus side, I now have the strongest caffeine headache I’ve had in about 10 years when I first had to go cold turkey on it.
But on the plus side it’s just a caffeine headache, and not a panic attack!
I think this is evidence that the ketamine treatments are working, and maybe this means I’ll be able to go back on Adderall when this is all over with.
I don’t know if this has done anything for my chronic pain just yet, but those things are so interrelated anyway. So this is pretty promising in any case.
Still on disability leave, and still in considerable pain. I’m trying not to work too hard on things, but it’s hard not to do things.
For example, I worked on a song with my friends Ken and Huan-Hua for this week’s Song Fight!; we entered the “We Did Everything We Could” fight under the band name Richard Donner Party. It was a fun song to make. Fortunately I didn’t have to even so much as look at a guitar. Most of my work was vocals, light keyboard work, and editing.
Over the past couple weeks my pain has been flaring up again, driven especially by work stress. A few days ago I hit a breaking point and realized that this is something I need to actually take short-term disability leave for.
Fortunately, Moz has an extremely generous disability leave program, and management would much rather someone take it if necessary. So, for now I’m off from work until August, and we’ll see where things go from there.
- My resin printer arrived today. It was a bit obnoxious to get a working print and holy heck it’s a messy process even when it does work, but this’ll be fun to mess with. (Yes, I now have three 3D printers. Only the resin one is actually operable right now, but the Artillery Genius has some repair parts on th eway, at least.)
- I accepted an offer on my condo. It’s a lot less than I was hoping for but it’s still plenty of money. When that sells I can start working on building out the studio, which is the linchpin for getting a bunch of my other house ambitions underway.
- I’m having one heck of a fibro flare and this makes it very hard for me to actually focus on work. But also there’s a stress factor involved. Hopefully that all sorts itself out soon.
- Because of the aforementioned flare I’m also not making much progress on getting my living room or kitchen in any sort of order. But I’m still slowly chipping away at that glacier.
- Cannabis isn’t really helping with the fibro right now, either.
Last night I came across a pop-science video about the link between ADHD and sleep disruptions, and it raised an interesting point: many of the ADHD symptoms are also symptoms of sleep deprivation, and the sleep disruption aspects of ADHD might actually be the underlying cause of many of them.
I’ve always had great difficulty with sleep, with trouble falling asleep at night but then being incredibly fatigued during the day. And I can’t help but wonder how many of my other issues are just plain due to crappy sleep. Maybe my chronic pain isn’t because of an underlying neurological cause, but is because I’m not properly sleeping and healing at night?
I’ve had three sleep studies at this point. The first in-home study vaguely diagnosed me with obstructive apnea, and is why I got a CPAP machine. The CPAP machine didn’t help at all, so a second study to rule out narcolepsy happened. Then the third one verified that CPAP doesn’t actually make a difference for me.
Anyway, one of the things mentioned in the video is that there’s been some success with treating some forms of childhood ADHD with time-release melatonin. So starting tonight I’m going to try taking time-release melatonin and see if that helps me any.