For post number 5 in my short series here talking about my experience living with ME/CFS, I want to talk about surviving the disease.
Generally speaking the severity of ME/CFS increases with metabolism but also increases with lack of blood flow, so symptom management revolves around trying to find ways to increase blood flow without simultaneously increasing metabolism. This is very hard to do.
To reduce metabolic stress I keep the house at 78° and wear long underwear so my body isn’t wasting any energy making heat. I also wear medical compression tights to reduce how hard my heart has to work to pump blood.
My workshop is just steps away from my bed and the kitchen to keep physical movement to an absolute minimum. To maintain fitness and promote blood flow I go for a 15 walk in the morning and a 15 minute bike ride in the evening which is the upper limit that I can exercise without getting severely sick for weeks afterwards. As a former runner, climber, surfer, mountaineer, and kayaker, living like this feels like being a wild animal caught in a trap. If I could chew off both legs to be free of it I’d gladly sacrifice the limbs. I’m 100% serious about that.
Every meal is a pile of colorful vegetables, healthy fats, and lean meats. I take expensive digestive enzymes to improve nutrient absorption. To avoid overnight hypoglycemia and terrifying nightmares, I eat a protein rich meal at 11 PM every night.
Basically adaptation revolves around maximizing efficiency. The problem is that it just doesn’t work very well which brings us to the hardest part of adapting to ME/CFS: the variability.
One day I might feel completely normal and it’s just this incredible rush of relief, a giant sunbeam of hope. Then I might be so sick for a week that I’m just hanging on by my fingernails trying not to think about the gun in the basement. Then I might be just moderately sick for two weeks, miserable but functional. Any one of these states of experience can be adapted to individually, but the seesaw between them is pure psychological torture. In the next post I’ll talk about how I’ve failed, and succeeded in keeping my sanity living with the disease.
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