One of the devastating accompaniments of CFS is something that is called PEM, or post-exertional malaise. One person’s description of it is “extreme exhaustion of inapprorpiate severity that can temporarily immobilize them and worsen their symptoms following normal physical or mental activity and takes an inordinate amount of time to recover from.” That description is a bit light regarding PEM, as far as I am concerned, but I will go with that definition for now to serve as a springboard for the main point of this post.
The term “post-exertional malaise” does as much disservice to the devastation of its affects on those suffering from CFS as the title “Chronic Fatigue Syndrome” does itself. Both term and title grossly understates the severity of this illness. If I were to rename PEM, I would call it CRME or “Catastrophic Resultant Movement Effect” because that is precisely what happens to me when I crash.
The word “crash” is a completely accurate representation of damage done to my physical person once my body reaches the next limit of what it can handle. The horrifying realization that mental activity triggers the same catastrophic devastation that physical activity does in CFS sufferers fills me with “shock and awe.” A few hours of reading self-improvement articles, providing comfort and support at a couple of my online support groups, writing two articles for my blog, and doing a little research on creating a forum (which I am in the process of doing right now, by the way) resulted in a devastating crash.
“Crash” is the only way that I can describe the resulting trauma. My body literally felt as if it were one of those crash test dummies that you see on TV, slow motion curling up the body and flinging it through the windshield. My muscles all felt bruised on the inside. My brain was in a state of shock that left me in a trembling, surreal state of mind. (Thankfully, my sense of humor was still intact. I thought to myself, “Wow. Am I still alive? Am I even breathing right now? Wow.” An then I had a smoke. A cigarette is necessary for me after events of cataclysmic proportions. Think orgasm.)
I did not turn on the light in my bedroom all day. I wanted to turn off every light in the entire house. I turned down my fan because its noise (that I usually barely register) was intolerable. It hurt to move, breathe, and thinking was absolutely out of the question. After a few fitful hours of wimpering in the dimness of my room, my body fell into a light doze. My bladder picked the very moment that my body drifted into REM sleep to insist that it was going to relieve itself on my bed if I did not take that particular second to go to the restroom. (Restroom. What a cruel joke.)
Psychology has nothing to do with PEM. It doesn’t even figure into the equation. I did not have the strength nor the desire for introspection or contemplation. Neither anxiety or depression or even fear could stand a chance because, quite frankly, the physical trauma overtaking my body superceded both emotion and thought. So whenever I hear that CFS is all in the mind or that it is really depression, I am inclined to render those who espouse those views unconscious for a few moments. I wish that clinicians and statisticians could live in the body of a CFS patient for at least 24 hours. That puts a whole new spin on “clinical trials.”
I am grateful for PEM. Grateful because it is an ever-present reminder to prioritize, remember, and DO the most important things and to let the rest go. I no longer sweat the small stuff. I don’t sweat ANYTHING. Because the cost of that blood, sweat, and tears is too great. I choose only those things that are beneficial and add to my life.
I have lost far too much with this illness. My body and some of my mind. (Brain fog, cognitive impairment, etc.) But my spirit is mine and that I am keeping it. I am imprisoned within my body, yet my spirit soars free like an eagle on the wind.
I wonder what kind of trouble I can get into tonight.