If ‘malaise’ doesn’t adequately describe my dreadful condition after too much exertion, it does fit another consequence of ME/CFS. After so many years of trying to pace myself successfully (whatever that means, since my over-taxed level seems to change from week-to-week or even day-to-day), a kind of ‘malaise’ has settled like dust into my bones and brain, bringing boredom and lassitude (mental weariness, listlessness or languor).
On crash days, I fester in bed, trying to weather the head-to-toe pain, bleary eyes and brain buzz. I can’t read, talk on the phone, or even communicate much with my husband. The only distraction might be watching some mindless streaming true-crime video with my IPad perched on my pillow. This is far from malaise.
I’d say I am about 50% disabled. I experience various levels of debility and stamina, and I’ve not been able to always figure out what will cause me to crumble. Some days I can enjoy dinner out with friends and not experience the dreaded crash, but on others I can feel the painful drain, as if some vampire is sucking out my lifeblood (not really a hyperbole), during the salad course. Some days I can both do some laundry and make a decent dinner; on others, I’ll start out okay but have to abandon sautéing the onions and crawl back into bed.
So, of course, like all of us with ME/CFS, I try to avoid those days by pacing myself.
As a result of frequent uncertainly, however, I find myself vacillating over decisions. If I feel strong enough, should I risk going out to dinner? How important is this activity? Will I wind up in bed for a day, a week, a month? But will staying home just increase my sense of living outside the mainstream, isolated in the creases of life, and therefore add to an overwhelming depression? If I’m really blotto, there’s no choice. But on a better day, I can work myself into mini-madness being unable to decide.
Sometimes I just plunge ahead and go without major dithering. Last weekend I felt strong enough and so I deliberately chose to attend part of one day at the Tucson Book Festival. My husband guided my wheelchair through the various booths and events and I heard some wonderful talks by great authors. The next few days were awful but I knew the price and was willing to pay it. Without (much) regret. And clearly I felt a lift just from having been out in the world, doing something I enjoy.
I don’t always however, have this clarity. For the past 16 years of illness, on days when my symptoms have been mild to moderate, I have wavered back and forth: Should I venture forth or stay home and hibernate. I keep monitoring my body. How good/bad do I feel?
So what does this have to do with a developing malaise??
I think it’s partially the result of forced idleness. When I feel reasonably capable but opt to stay home and rest out of fear of the too-familiar evil results, I can descend into an emotional and spiritual kind of lethargy and lack of enthusiasm. I get The Blahs. I’m not suffering a severe downturn which makes activity impossible; instead, I’m just hanging out, meandering, kind of purposeless. I won’t do anything even remotely strenuous—otherwise why did I stay home in the first place? Days, weeks, years of this can lead to the psyche of a slacker.
Indolence itself induces indolence.
I fight against this, of course. When I feel myself descending into sluggish mode, I defy the crash demons and whip myself into some kind of project – baking muffins or driving to the drug store or starting to knit an afghan or writing a blog like this, all with built-in rest times – and then face the consequences, either some restoration of psychological well-being or another lousy collapse. Or I might do the mindfulness thing – stop, assess, breathe in patience and compassion and acceptance. I’m not great at that but it still helps at these times.
This is some wacko illness.
I wonder if this is my own private experience of malaise, or if others share it.