#i mean listen. i sometimes get sudden attacks of extreme fatigue that make it impossible to move

[natandacat]

In the moment, I can do a given effort, with immediate consequences that I can manage, even though they are already disproportionate (because of my dysautonomia, I might syncope, vomit, or get sustained inappropriate tachycardia & arrhythmia). I would be ok with this. I could live with this.

But the next day? The next day I can't walk. I talk excruciatingly slowly and with a slur because my facial muscles are completely relaxed from the lack of available energy. I can barely reposition myself in a laying position, sitting up and standing, even with help, might be impossible. I can barely think. I can barely used my phone; I need to use speech-to-text because I cannot type on my laptop.

I am lucky that my mental health is in a really good place nowadays. I genuinely enjoy producing those potentially triggering efforts and I'm not under unmanageable stress. And still, this happens. Systematically. I know for a fact that if I vacuum my flat I will have a minimum of 5 days in a Post-Exertional Malaise (PEM), during which I am mainly bed-ridden.

That's what myalgic encephalitis means (which is most likely what is happening with me and other long covid patients with this profile*). It's not a psychiatric condition and treating it as such is dangerous because pushing beyond your limits can make your condition permanently worse (this is currently my infectiologist's theory: I got worse overall because I pushed myself too much and triggered too many PEMs). It's dangerous because it is harrowing to live with this condition. Imagine being too sick to get a bottle of water. Or to bath. For a full week. And this can happen anytime you make too big an effort -and there's no true way of preventing it because you won't know it was too much in the moment. Of course that's a source of distress! But it's not a consequence of it. And telling patients that it's the other way around is extremely irresponsible and demoralizing.

*I will soon participate in a research study to that effect, so hopefully more concrete data will show that the chronic fatigue associated with long covid has the same mechanism, and potentially is, ME/CFS.