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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@Mor is the main issue that you cannot physically ambulate from bed and require someone to lift you, or can you transfer to a wheelchair if someone pushes it, or is the issue more that you need transportation and someone with you at the doctors appt to help convey the information? I was curious which part of the process needs the most attention (or if it is all of the above)? I realized when I started to respond that I was not sure which part was the biggest challenge and hoping you could say more.
Hi Jennifer,
I should've explained that it's more of an issue of worrying about crashing, as I'm mostly bed-bound, but can still get up to go to the bathroom, etc. I could push myself to go, which is what I'll likely do.
My experience with 211 is that they only deal with psychiatric emergencies. Have you had a different experience?
I so agree with what you said about having someone to advocate for you. I needed that so many times. I remember being in a waiting room having to fill out forms, when the doc wouldn't see me without them, and I literally was too zonked to do it.
Another time, I was admitted to the hospital with no one with me at all for the whole 2 weeks I was there, having to deal with the millions of questions from millions of people, when I felt I couldn't handle it, but somehow I guess I did! I even got the flu while I was there, on top of everything else I was dealing with. Somehow we rise to the occasion as best we can!
Somehow we rise to the occasion as best we can!
I should've explained that it's more of an issue of worrying about crashing, as I'm mostly bed-bound, but can still get up to go to the bathroom, etc. I could push myself to go, which is what I'll likely do.
I live in the U.S.
I was mostly house bound, but got a stomach flu, then anxiety and insomnia from some supplements, and the combination wasn't good. I have what I guess now is Post Infectious IBS, and a sore throat that comes when I walk around too much. POTS too.