Ugh I'm in the i feel like I'm dying PEM mode. Nobody else seems to have this feeling. It scares me what if i have something progressive and just dont know what it is.
Its like i feel like my body is gonna collapse, organs and can't breathe and just on the verge of dying feeling.
Do others get this awful feeling during PEM?
Early in the illness before I knew not to exercise. It felt like sepsis is described, or like going into shock. I remember thinking:
my mother will find me dead on the floor -- she will come in for morning coffee tomorrow, and I'll be dead, on the floor. Followed of course with furious determination that such a horror would never occur, like I had a choice!
It scared the beejesus out of me.
Besides the fear, there was a core of disbelief that was hard to shake: that you can't experience that kind of suffering without some vital cog of your machinery cracking loose. You think,
if what I just felt didn't kill me, it's certainly only a temporary reprieve.
But it's not. It's the new normal until you figure out everything that triggers you that is at all avoidable.
I encountered this kind of crash before I knew what would and wouldn't upset my newly fragile system. I haven't had this 'definitely dying' kind of crash in years, and if the other comments I've read are anything to go by, others also experienced this around onset but not necessarily later on. However, I'm not sure severe patients would say the same thing -- maybe *shudder* that's what it's like for them always.
Finally, I'm glad you asked this question,
@Horizon -- "a worsening of all symptoms on exertion" has always struck me as a woefully inadequate description of PEM. A bad bout of PEM feels like you're dying; I don't know how that got watered down to 'feeling a tad bit worse than usual', though that's what it's like in its most benign form.
