For post number 6 here talking about my experience living with ME/CFS, I want to talk about the psychological side of the disease.
I’ve been sick for two decades but nine years ago my life imploded completely when I had to stop working.
Losing my farm, my home, and my workshop was like getting mentally worked in a massive flood stage hydraulic. I spent two years just getting the stuffing beaten out of me trying to hang on to my old life before I finally pulled the mental sprayskirt and flushed downstream.
After that I just flailed, clutching at rocks and branches, scratching furiously towards eddies, just trying to grab anything to get a rest in the torrent.
Allopaths, Osteopaths, Naturopaths, chiropractors, Chinese medicine, acupuncture, ozone therapy, hyperbaric therapy, electromagnetic therapy, water therapy, sound therapy, vibration therapy, light therapy, heat therapy, cognitive behavioral therapy, trauma therapy, philosophy, psychics, shamans, and prayer.
I’m not gonna say that none of this helped but I wouldn’t be writing this right now if it had helped very much.
I think my biggest mistake was digging in for the trench warfare of mind vs brain. I’m not keen on surrendering my happiness to a metabolic brain glitch, so I blasted the enemy with the biggest philosophical, psychological, spiritual, and nutritional guns I could find. For six torturous years I contorted my mind into every possible configuration (including non effort and non thought) and basically drove myself insane with frustration and self-hatred in the process.
Finally admitting defeat freed me from the self-hatred but only at the cost of my biggest source of hope for feeling better. This is why people with ME/CFS can’t just “accept the disease and make the best of it.” There is no “best of it” to get to unless the disease can be stopped in the brain.
Theses days when the mental and physical suffering is out of control I just focus on dissociating and distracting with work and podcasts. It’s a pretty dim way to exist but it’s not absolute darkness. In the next and final post I’ll share some of the joy and the lessons I’ve gained from two decades of suffering.
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