Me: *is sick for unending years*
Me: *has one good week*
Me, the following week: Ugh, why am I so tired all of a sudden? Where did this come from? What did I do different? It's a mystery!
#recovery2026 — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #recovery2026, aggregated by home.social.
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My fatigue levels have been super unpredictable the last couple of weeks.
Super mentally fatigued especially. I'll be fine and then boom.
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But see, then what happens is, I get excited about having a little energy, and I play video games like Dwarf Fortress, or, bless my soul, I just got into Tales of Maj'eyal.
And then, I don't get body fatigued... I get brain fatigued. The mental derth shows up AFTER I stop playing.
But at least now I know how that feels so I can summon the willpower to back off.
So it's another rest day today. I have that luxury now.
But I really want to use it to play DF and TOME today! (TOME is mostly only fatiguing due to the initial learning curve and setting up better controls on my Steamdeck. And now that that's done... 🤔 )
My mind has also moved on to trying to solve new problems, create the next projects for trailer improvement. It's like Wile E. Coyote's lab in my brain with blueprints and arrows pointing everywhere. It's really hard to shut off.
My greatest enemy is myself.
(And Gosh help me, I recently learned about Songs of Syx, which is like if Dwarf Fortress were COMPLICATED, and I have banished myself from even thinking about it!)
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I would like to post about how I've improved my ME/CFS over the years. It's been a long program. I think it would be helpful to others.
But one of the things I've had to pace myself off of is writing long Mastodon posts. Even though they're fun, they do take a lot mental energy that drains the battery. So that will have to wait!
But my first piece of advice (aside from listening to your body and intuition): Do whatever it takes to get out of whatever current chronic stress and ongoing traumas you're in right now.
I didn't even realize how bad things were for me for so long. Escaping required extremely hard decisions, scary sacrifices, good fortune, trust, and work on my mental state.
Which is impossible if you don't have enough energy to start with. I barely had enough, and burnt out several times more in the escape process that I later had to recover from (am still recovering from).
Anyhow, I said I wasn't going to write that today. ;)
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Mid-September, I had this feeling that I needed to take a whole week off. Not a sick week (I felt ok enough to keep going) but an actual vacation.
I did end up doing things that week, but only if I felt like it. Mostly physical activity winter prep, only if it Flowed.
Part of recovery for me has been listening to my intuition. It didn't make sense to stop for a week, because, while being closer to caught up, I still wasn't caught up with the pending cold weather as my hard deadline, and I was still out of work with money dwindling fast.
But I listened, and after that felt my floor — that lowest negative energy gap — had lifted significantly. I felt fewer of those deep symptoms after a couple hours of activity. Now I can get tired without getting deep-fatigue that'll take days to pull out of.
I do still need to pace so I don't ruin my progress. But now I feel I can pace comfortably.
Feel like taking a day off on a Thursday? Go right ahead! The lack of stress when doing so is also making a difference.
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I have been an absolute workhorse on RV winter prep and juggling finances for the last three days. And that's after not quite resting enough last week.
As a reward, I'm taking a rest day.
On top of that, I'm feeling actually "caught up" for the first time in over decade. There are things I could be doing, but none of them pressing, urgent, with a deadline, pending emergency, or making my life severely inconvenient until completed. (Erm, ok there is that one small volunteer thing I'm way behind on...)
I've learned to pace and have locked in healthy habits. I don't have paying work atm, but juggling finances this week has given me a comfortable amount of time to find it.
I don't mean to get cocky, but am I out of the danger zone???
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I genuinely enjoy work. So it was a real pleasure to have the energy the past two days to really push through the last phase of this project without debilitating fatigue.
We'll see tomorrow (a scheduled rest day) if my fatigue goes beyond anything other than typical muscle pain after hard work. But during the work, even after I got to the point of jelly arms, I didn't have significant brain fog or the type of cell-deep myalgia that signals deeper damage requiring many days of recovery.
The project seemed an endless array of steps and unexpected difficulties. It looks like a simple wooden box, but the logistics in an RV were not simple. Lots of annoying little steps, surprise obstacles, key decisions, and learning new skills. Where stopping for a few days wasn't really an option because that's my only bathroom.
My old skill of just plodding forward, focused only on getting the next step done right, really came in for me. That's a cope I haven't been able to rely on without paying a severe price.
I'm not noticing signs of that price yet. Tomorrow will tell!
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You want to get inside the head of an abuser? Of a predator? Of a cult leader? Of a corrupt officer? Of an Epstein class ass?
It's a person going from bad decision to bad decision who hasn't seen a moment of serious consequence. Who has absorbed every single one of them using whatever resources at their disposal — money, charm, wit, privilege, connections, coercion, manipulation, intimidation, power — and they came out ahead.
Now that's a kind of freedom.
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I mean, that's a certain kind of freedom nobody talks about. The freedom to make bad decisions.
Some people don't live through that.
Some people wish they hadn't.
And some people walk away scott free time and time again.
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Honestly, this is just looking at a different side of Maslow's hierarchy: The ability to make a few bad decisions without risk of dire consequences.
It also describes the various situations of the strata of society.
How many bad decisions can *you* make and still absorb the consequences?
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I have finally won myself the gift of being able to make a few bad decisions without risking dire consequences.
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My body's answer to this dilemma in the past has been, "Well if you won't stop then I'll stop you for you."
I'd really rather not do that again.
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I'm noticing now that my current limitation on pacing for MECFS care is myself.
My brain shut down for a year. That is, I could force it to function, but I quickly encountered pain that only increased the more I forced myself, until even words would not come.
The remedy was to think as little as possible. Not even for fun. Just as much as I needed to meet my limited responsibilities, and no more.
Well, now that the mind-pain has subsided and my flexibility has returned, I find myself slipping back into old habits. You'll notice I'm posting longer stuff on here again. I'm also playing mentally difficult and obsessive video games (Slay the Spire replay, from scratch). I've been doing this hard enough for long enough now (a couple of weeks) that the brain and body pain has returned consistently.
I see the warning signs. I've seen them for days. I woke up tired three days in a row!
Yet.
Just one more reply. Just one more small task. I can do it! (I can but I should not.)
I *did* manage to stop my "I'll just set up Time Machine on this old drive real quick so I don't have to worry anymore" impulse today. The goal was to "start looking into it until it gets hard," which I did, and I manage to set the tangle of cords down.
But I still have my work day ahead and I'm already fatigued. I have been unable to talk myself into a sick day, because 1. I need money so so bad, 2. Work is fun!, and 3. If I don't work, I'll just end up playing a mentally-taxing video game or impulsively write YouTube comments or post here, and like, uhm.
Because I LOVE thinking. I LOVE putting my ideas into action. I had to hold myself back from all the fun-type thinking for a whole year! Now it seems I can't get enough, even when my body is protesting.
It takes energy to quell my impulses. I seem to have no willpower right now to quell the impulses.
Which is how* I got this sick in the first place.
* Well, that and chronic trauma.
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Maybe I'm finally the point where I'm "I could just go to bed early and that'll actually work" level of tired.
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This week started rough with a panic attack and medical scare.
But I had the rest of the week with very little fatigue while being active and able to pace comfortably every day.
I hit a little fatigue today while putting up a shelf. But the shelf is up, tiny kitchen is more usable, and I think if I stop now I'll recover ok.
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The Good News: I can't use pain as my red flag measure of fatigue anymore.
The Bad News: I can't use pain as my red flag measure of fatigue anymore.
Today I discovered the state of having to push myself really hard through a simple task that I thought I'd never get through (taking a shower) without actual pain.
So I've learned that those two fatigue states are separate and I'm going to have to use some other indicator to know when to quit.
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I was just watching a video of Slowdive playing When the Sun Hits on stage, and realized I first heard of shoegaze as a genre at the virtual DEFCON, summer of 2020, from a set that DJ Shadow played. It was an awakening.
This music saw me through so much suffering. It was my reflection of pain, a wall of pain placed outside of me to buffer what was within. And when that wasn't strong enough, I turned to blackgaze.
I just realized that I'm not sure I've heard that song without being in deep pain.
Until tonight.
Funny how that time was long enough ago to be a memory now. This song, no longer either new nor overplayed, but nostalgia.
At the time, it was what always was, and what always would be.
Here are the songs I've collected in the six years since. (It's on Spotify, too, if you search "Blissful Haze, Shoegaze.")
Thanks for getting me through all that. 🎸🫡
https://music.apple.com/us/playlist/blissful-haze-shoegaze/pl.u-WabZZ7RCdmK84r
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I stepped outside the trailer and it was like I was waking up for the first time in years.
Though I've lived here more than a year, I took in my new surroundings.
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Getting sick enough with a fatigue disorder is like not having enough gas left in your car to go to the gas station. And you just live in that state all the time.
I think being able to play "real" video games again is a huge part of me feeling better. I've got access to this and other refueling stations that have been off limits to me for years.
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I was hoping to put a slab of insulation on the roof of my cubby before it gets hot again, but didn't get to that. If I'm not sick tomorrow from my efforts today, I might be able to get to it tomorrow.
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I had an absolutely incredible day.
The weather here has been cool and rainy (I know, I know). I woke up full of energy and clear-headed executive functionality.
There was a break in the rain. So I went outside and got a ton of things done!
I also did well managing micro-pacing (i.e. stopping for breaks) and quit before overdoing it. I'll find out if I paced well enough based on fatigue levels tomorrow.
It was fun and satisfying and I got things done that felt like I'd never get to. Little improvements that feel good. I didn't push myself through pain; in fact it was more about having to restrain myself from going harder.
Though I only worked a couple of hours, it felt like a perfectly normal couple of hours just like I used to when I was a go-getting high achiever.
I'm feeling hopeful and wishing for more great health and enough peace in my life to stay steady.
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Actually I just realized this is the first day in years that I can say I went pain-free without using any qualifiers (ok except for the mosquito bites and my foot where I stepped on something).
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Shame is a lot like ego. It makes a bunch of noise but resists being noticed for what it is.
Shame and ego are intrinsically tied. And they're both part of manipulative coercion.
Much of that we call "trauma" is actually a system of beliefs reinforced by emotional triggers which keep us obeying a coercive group or individual. C-PTSD is more like conditioning than trauma. Trauma is just one part of it. Recounting isn't just about telling the body we're safe now. It's also about unpacking the belief system that triggers anxiety and shame wherever we go out of the bounds that we installed in us. Emotional barbed wire executing us until we pick through each strand.
Not just that we had bad experiences, but what they taught us about our identity, behaviors, and worldview.
Being groomed by one abuseror cult makes us open to abuse by manipulators later on. Each of us who were selected in childhood and conditioned into the role of ready-made victim are passed along in the unofficial abuser network like a worn out bible.
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Well from my posts today I seem to have regained some of my cognitive powers today. I didn't struggle through mud to find words or get drained (though that can creep up on me so I need to back off).
It's been just about a year since I've been comfortably able to do that.
I need to keep up the slow pacing and self-restraint. It's taken an uncomfortable amount of doing as little as possible for as long as possible to get to this point.
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I don't like being idle, though. I keep getting up to so small chores but even little things (like sorting the tea) make me hurt.
Being on here isn't good for me either.
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Also it's some extra bullshit that he was never expected to change his name once. As the default, this is my problem because I'm AFAB.
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If you ever have a romantic partner who pressures you into deeper levels of commitment, and acts hurt if you don't want to move so quickly or don't want to commit at all... just like, that's his problem. He can go to a therapist or whatever. If he needs commitment because he's looking for security or a certain family structure or whatever, then he can break up with you and find someone more into that.
Me taking the last name "Lindsey" for him as my pen name, and then plastering it all over my professional brand, that's a specter that has damaged my career and followed me a decade after leaving him.
I did that because he pressured me into agreeing to an engagement, when I had repeatedly said I hated weddings, and I never, ever wanted to be married again.
And while we never did get married after a couple of years of engagement, he reminded me frequently how hurt he was that I continually postponed wedding plans. Yet would not engage with me about my doubts over relationship issues.
His name is on my work. Many of the publishing platforms will not let me change my name in the listing. Reader are confused at my multiple bylines. I've had to mess with domain redirects that don't work anymore.
Just, if someone wants you to commit and gets hurt by your hesitation, that's a them problem. They need to work on it, not you. You're just fine.
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Well, I don't have my good health today like I'd hoped. Oh well. Other signs of progress remain evident.
It's weird feeling depressed and safe at the same time.
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I thought my last flare-up would last forever.
I am committed to nightly meditation now. And a breathing mantra I'm using to try to keep my throat from spasming when I swallow. And to prioritizing actual fun every day even if something else has to slide. And to moving my body every day (measured in calories).
Slow increments of progress.
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I had a couple of weeks of decent physical and metal health but I'm spiraling again. sigh.
My floor is still seems higher than it was though, so progress is progress.