Oblivion by Amy Smith. First person story of mecfs progression and symptoms.


Story at link, excerpt below. https://pitheadchapel.com/oblivion/

Only a few months after I’m diagnosed with what is ominously called the “living death disease,” I become bedbound.

What happens is this: at the time I receive the very unwelcome present of my diagnosis, I fall into the “mild” category of ME/CFS. This means that I can no longer exercise or expend significant mental energy without experiencing agonizing pain and crushing fatigue, along with a number of other symptoms that are too dreary to list. But I can still walk short distances, listen to music, watch TV, and read books. Basically, it’s the lifestyle of an aging hermit.

This situation is, obviously, unacceptable. I’m twenty-five years old, at the peak of my beauty and physical fitness, and I’ve just gotten accepted into a very demanding grad school. It is absolutely crucial that I get back to my previous state of health as quickly as possible.

My GP diagnosed me, but she doesn’t know how to help me. So after a few months of searching and adding myself to the purgatories of specialists’ waiting lists, I find one who has an opening. He prescribes me a medication, a probiotic called GCMAF; the fancy all-caps abbreviation lends it legitimacy, gives it the heft of something like NASA or the CIA. Each day I take it, I feel sicker and more tired. But the doctor is a renowned expert, so I trust him. He tells me there is no possible way this medication could hurt me. He tells me my fatigue is due to nothing more than a long walk I took several days prior, and that I’ll soon feel better.

On day six of taking the medication, I am unable to get out of bed.

In all my months of living in the mild category of ME/CFS, I had heard about people in the severe category—the bedbound category—but I never seriously thought that it would happen to me. But now, within only a few days, I’ve become unable to walk more than a dozen feet or tolerate more than a few minutes of screen time or speech without sliding into “post-exertional malaise,” or a “crash”—a state of fatigue so profound that I can barely move and can speak only in a whisper. I keep waiting for it to pass and to return to my previous baseline, where I could at least pretend to be somewhat normal most of the time. I keep thinking, You must be kidding me, right? I mean, how can anyone survive like this? It is unimaginable to me that this is my new normal.