I finally have a name for one of the things that have been knocking me down for the past several years.
It's a more comprehensive name for the Chronic Fatigue Syndrome I already knew I had. There's been a lot more research done on it and a lot more awareness spreading about it in the past six years, since it's often triggered by a viral infection, and - you guessed it - COVID is a viral infection.
It started really taking me out about the same time my crippling back pain started. The back pain that no doctor can explain, except for a little pars defect in one vertebra, and a stray line of old calcium following one of my veins.
Mostly they called it "deconditioning" and recommended physical therapy.
The physical therapy which would leave me absolutely useless for the next day or two, which - conveniently! - when the next PT appointment would come around. And the cycle continued, until I achieved an extra 5-10 minutes of comfortable standing time, at the cost of my entire life.
(I've had a little more success with this app called Hinge Health, which gives you customized 10-minute sessions that you can do at your own pace. My insurance covers it. Yours might too.)
ME/CFS is largely seen as a disease that you push past, because you're "just tired." Because you're deconditioned and need to get used to exercise again. Because you're not eating right, or you're depressed, or you're dehydrated, or you're anemic, or it's all your fault some other way...
Unfortunately, pushing past this particular disease categorically makes it worse.
PEM - Post-Exertional Malaise - is the key symptom of ME/CFS. It means that your body doesn't recover properly after you over-exert yourself even a little bit. And that includes mental exertion. And social. And emotional.
One can literally stress themselves into an episode.
My episodes usually mean I do almost nothing but sleep for 18-36 hours.
It's going to be... really hard to convince myself that I can't push. That yes, cleaning up that one extra thing will cost me. That I can't borrow spoons from tomorrow; if I try, I dump the drawer, and have to spend the next day or three putting it back together.
I knew the symptoms I had. I'd never really put them together into this one big thing. You know, other than the other Big Things of depression/anxiety, type 1 diabetes, diabetic retinopathy, fibromyalgia, autism, self-managed ADHD, and oh yes, that crippling back pain...
The back pain, and the sleeping episodes, coincided approximately to when I started passing out on the toilet. The EMT, that first time, said I had "vagaled myself" (squeezed my vagus nerve too tightly when straining and restricted the blood flow to my brain). For several years afterward, I had to lie down when having a blood draw or I would risk fainting. Sometimes, I had to get off the toilet while I was using it and lie down on the floor, so I wouldn't pass out and fall down onto the floor.
That has mostly stopped. I don't know why. But I did get the CT scan which showed that calcified vein quite some time afterward...
ME/CFS also comes with a host of side effects that I find... alarmingly familiar. Digestive issues. And muscle pain like fibromyalgia. And brain fog - oh, is that why reading things got so difficult? And why I was noticing an increasing amount of aphasia?
I... don't know what to do with this yet. It's a lot. But maybe it means there's advice out there that can actually help? Maybe identifying it can lead to... something.
I don't know. In the meantime, I'm tired.
