Freezing boiling sweating shivering full body tremor EDS and massive dysautonomia flare

It’s been a month and a half since a minor flare turned into a massive one. I’m in bed—in between having to fall out of it so I can crawl to my trash can and dry heave…or just throw up pure bile.

I know I am not actually alone in this, but I feel SO alone in this. I’m laying in bed boiling hot in layers upon layers of sweat as I also full body shiver and tremor and parts of my body are both ice cold and burning hot to the touch. My resting pulse is creeping past 130 now (but swinging pretty massively between 64 and 142) because I haven’t been able to keep anything down. I’m staring at the medicine that would help me, and there’s no way for me to use it. Even dim light is vomit inducing so using the phone is HARD; I’ve been trying to finish this for hours now. I keep having to stop and throw up, or stop because I’m shaking too hard to hold my phone, or because I’m so exhausted I can’t move, or because I’m in so much pain I can’t move. Or because I’m shaking hard enough to sublux joints and they all keep slipping.

No one needs me to keep listing out the all the ways I feel worse than awful.

But I feel so so so alone right now, and I’d really appreciate it if anyone…I don’t know. Could just tell me I’m not? Tell me they struggle so hard too?