For post number 4 in my short series talking about my experience with ME/CFS I want to describe what it’s like to actually live with the disease.
Waking up in the morning it feels like I’ve been hit by a truck and haven’t slept in a week, this gets a little better mid day and slams back into me in the afternoon. It’s similar but not the same as having a really bad flu, but one that never ends.
With the autonomic nervous system damaged and the brain both inflamed and metabolically impaired, endocrine signaling goes haywire and neurotransmitter pathways collapse, dragging mental health into the gutter.
For me it’s a quiet war. I try to force feed my broken brain positive thoughts and it pukes up negative ones in response. This doesn’t actually work, fighting mood with logic, but it’s either that or just surrender and dive headfirst into the toilet bowl of suicidal depression.
Problems with blood flow, metabolism, and neurotransmitter synthesis also cause severe OCD, ADD, and anxiety, especially when the brain is tired. If I forget to eat or exercised the day before I’ll start having legit psychiatric issues which is pretty humiliating.
Cognition is a disaster. People that were once executives can end up reading at a third grade level. The neurons are surprisingly intact but the inflammation and white matter loss just destroys functionality.
I used to take so much pleasure from teaching in person. Warm, funny, enthusiastic. Now I teach to a video camera, distant, mechanical, struggling to complete sentences and stitching together hundreds of takes to complete even a short lesson. It’s like that scene of Owen Wilson being interviewed by Charlie Rose in the royal Tenenbaums, just not nearly as funny.
The net effect of all this is that every last ounce of energy is diverted to survival tasks while friends, fun, sleep, joy, sanity, and finally work just evaporates, leaving me a shell of the person I once was, even while my life looks prosperous to the outside world. Months pass, years, decades. I thought that I would’ve killed myself by now but that’s actually surprisingly hard to do. In the next post I’ll talk about how I’ve survived.
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