TDLR - until how can the body survive like this? Someone else the same? :(
Summary: I feel like I’ve pushed my body far beyond what it could tolerate, and now I’m trapped in relentless crashes, severe autonomic overactivation, profound sleep dysfunction and malnutrition, with no ability to reach even a stable bedbound baseline.
I feel like I’ve caused too much damage.
My illness started 3 years ago. Instead of resting and pacing, I kept pushing myself. I kept working through crashes because I thought that if I just pushed a little more, eventually I would get to a place where I could rest and recover. I didn’t listen to my body and I didn’t pace properly, and I kept pushing until I completely broke down.
Before, it was mostly push-crash. Now I feel like I’m trapped in crash after crash after crash, and I can’t find my way out.
I’ve even fainted and had seizure-like episodes from stimulation. My nervous system feels completely overwhelmed by even very small amounts of stimulation.
I don’t even know how I’m supposed to pace anymore when I’m already in a crash and then immediately go into another crash. How am I supposed to pace when even lying down feels like exertion?
I’m not sleeping. I’m stuck in adrenaline. My heart is pounding, my brain is racing, and my whole body feels like it is permanently switched into fight-or-flight.
When I do manage to sleep, it’s fragmented into 3–3 hour periods with vivid dreams. I wake up feeling like I haven’t rested at all. There is NO rest-and-digest, no homeostasis, no feeling of my body ever switching off.
My body never calms down. Everything triggers it.
If I manage to sleep for a little while, I wake up feeling like I’m -10,000 below baseline. I don’t even want to move because the moment I move, the adrenaline starts again and my heart begins pounding.
I’m becoming malnourished. I’m losing my hair. I can’t even reach a stable bedbound state. I’m already lying down and resting, but my body still feels like it is exerting itself.
I feel like I’m getting weaker and weaker, and I don’t know how I’m supposed to recover when I can’t even get my body into a state where it can actually rest.
It has been almost one year of this severe state.
I haven’t seen anyone else who is this severe. I keep wondering if there is another way for the body to heal, because I genuinely don’t know what else I can do.
I know my body. I know myself. And I feel like this is severe ME/CFS, and that I have pushed myself far beyond what my body could tolerate.
I don’t know what to do anymore. I don’t even know what normal sleep feels like anymore. Benzos don’t help either — I’m starting to have paradoxical reactions to them.
I’m starting to give up because it is simply too much suffering.
Bedbound state would be a vacation for me! Without symptoms. Not survival.
And the worst part is that I keep blaming myself. I keep thinking that this is all my fault because I didn’t listen to my body earlier, I didn’t pace, and I kept pushing through crashes.
It feels like I did too much damage and that now it’s too late.
I feel like my body is going to give up, and I don’t know how I can keep fighting like this for years.