u/DependentSwim6424 — reddlx

April 30, 2026.

Entry #15 Day ~64 v severe baseline since end of crash. Day ~1113 bedbound

Woke up in PEM again. Hard to type. Hard to think. Broken battery exhaustion. Desperate anxiety. Cold, nauseous, distressed stomach. Pain. Just have to let time pass.

Typing this slowly at the start of my day.

PEM poisoned feeling like cold, burning, heavy venom flowing through my bloodstream and pooling in my stomach.

Head pressure pain.

Sore arms and hurt elbows from phone.

Burning leg pain.

Burning knee pain.

Sore throat.

Can’t think.

Blinking slowly.

Sensory sensitivity.

Can’t think.

Can’t be in contact much at all even outside of PEM.

The worst of this disease has to be gone through alone.

Will add/update here when able

~7 hours since waking to PEM: I started writing the above when I woke up, finally finished editing it like 5 minutes ago. I’m still in it. These updates are gonna take a while.

The original title of this post was gonna be “Anxiety in PEM”. In the moment, I was desperate to get this out, to not feel alone, since my crash and becoming very severe recently, I sometimes get these overwhelming attacks of anxiety. Fueled even more by the cognitive dysfunction and life circumstances. In these moments, I want to be in contact with anyone, but between all the impairment, am not presentable, if able.

Sending regretful messages, which is awful when your entire social existence is only messages and they’re few and far between. That goes for the new baseline brainfog without PEM too. I can’t text back and forth in real time anymore. I can’t believe it’s been like 4 months. During the anxiety attacks, I’ve had some relief with a listener text service before, typing very slowly, if able. Impaired.

PEM aside, general anxiety is also new for this baseline. Severe brain fog as a baseline too. It feels like I have <1% of my brain available to me, and that part is impaired. The level of loss is hard to articulate. Like >99% of the ability and functioning I had at severe for ~3 years is suddenly gone.

I was relatively happy.

At least not in this.

A constant looming fear for my future now.

Like my body’s on a tightrope.

Worried about not being believed.

I’m in everyone’s hands to a worrying degree now.

I wish I got in better situation before this.

I don’t have a doctor anymore.

Horrified about having to go once in-person to get on telehealth.

This PEM was a surprise. Yesterday was good relatively speaking. I could work more on a longform message and was planning to send it today. Guess not anymore.

Funny, a 72hr PEM window ended the day before yesterday, and I wrote updates and commentary with it drafted to eventually post. I literally can’t recall, but I don’t think I had too bad of PEM during that period a few days ago. At least I don’t think as bad as now. I had exerted quite a bit from an emotional moment with my mom, and was afraid, and now, after a day of relative peace, worse PEM, with no obvious trigger. Daily PEM at this severity is another thing. There’s so much I need to do and I’m so limited.

Socially I have 10+ people to respond to.

The people I’m most in contact with is maybe once a week, if that.

3 longform messages to write or edit and send.

Each can take 2+ days to write once I start, if no PEM or worse sleep.

And even in those, because of my brainfog, I make mistakes.

How the fuck did I get here?

My life is a head shake.

There’s more to say, I’ll put it in another post.

Idk when I’ll close the window on adding to this one.

Depends how I feel tomorrow.

If nothing else I’ll update when I wake up again.

Hopefully better.

~10 hours since waking to PEM. Literally just finished the 7 hour update. I’m wired and in PEM. I have an overactive nervous system. The anxiety is part of it. This is such a weird experience. Not just weird. Horrible. Just have to get through the day today.

~A few minutes later. PEM wired brain fog is so crazy. I’m wired but I can’t think. I hate this so much. I hope my nervous system calms down.

~Half an hour later. In my wired brain fog I could respond to a few people’s posts/comments. This is so tough. Can’t think.