I suppose I’m depressed, but it’s not the slam-bang suck-out-my-soul torture of the early illness days when I choked inside my own Pigpen-like dust storm.
I have my distractions. I can laugh out loud at the satire of HBO’s “Last Week Tonight with John Oliver” and “Silicon Valley”. Recently I enjoyed the witty “A Gentleman’s Guide to Love and Murder”. And the few minutes each week when we watch the antics of my 18 month old grandson Ira bring me real delight.
One cup of tea in the morning (not every morning) gives me about a two hour spurt of enough activation to shower, prepare and eat breakfast, sit at my computer. I can write for about an hour. Like now. Aside: But I can only allow myself the one cup. Otherwise I suffer burning urination, the result of a strange and freaky reaction to caffeine, and nasty heartburn/esophagitis. Some days I try to trick my body by sneaking in another quarter cup later in the morning, but I’m always sorry the next day.
Recently, however, my spirit is reacting to the 15 years of enforced idleness, of low energy and pacing, by deserting me. It’s as if I’ve gotten lost inside the couch-potato life and can’t muster up desire to do much. And the more I don’t do anything, the more I don’t care about doing anything.
It’s a gentle miasma of listlessness.
I’m stalled in ennui, defined on Dictionary.com as “a feeling of utter weariness and discontent resulting from satiety or lack of interest.” Usually the satiety is caused by over-participation in pleasurable activities to the point where you just take them all for granted and become bored. You are full beyond capacity. For those of us with ME/CFS, however, the satiety comes from over-participation in the LACK of activity.
I’m feeling the truth of this quote from 19th century historian and statesman George Bancroft: “Ennui is the desire of activity without the fit means of gratifying the desire.”
The daily languid routines, the need to rest, the worry about crashing, the intermittent brain fog that settles into synapses and makes complicated thoughts impossible. All that.
I’m gorged with an abundance of theories. Cort does a magnificent job of sifting through all the latest possibilities of the causes of and treatments for ME/CFS, and then presenting them clearly and articulately. I also receive bulletins from other sources. I need this information to make intelligent and reasonable decisions and to present to my doctors. I find, however, apathy now descending when there is so much to make sense of.
I used to feel motivated when I read about some possible treatment and immediately researched and sought practitioners. That intenseness and zeal have faded after years of unsuccessful results, though I continue to be confronted by a growing abundance of theories that juggle a vocabulary I can barely understand (“humoral immune response”, “mast cell activation disorder”, and get this one, from PubMed and published on cfsknowledgecenter.com:
Glutathione (GSH) has a crucial role in cellular signaling and antioxidant defenses either by reacting directly with reactive oxygen or nitrogen species or by acting as an essential cofactor for GSH S-transferases and glutathione peroxidases.
Sorry. Even after looking up every word, I can’t penetrate that.
I am NOT suggesting these sites stop publishing research! I’m trying to convey the burden on those of us with ME/CFS. We HAVE to sift through this stuff ourselves, regardless of our weakness and pain and brain fog.
I suppose this ennui could be the flip side of anxiety, which used to be my default reaction when overwhelmed by too much information. After years of manic fear over missing some crucial piece of information that would lead to a cure, I settled into a more relaxed acceptance of the disease and those writing about it. With the current increase in research and speculation and my consequent feelings of overload, maybe that acceptance has mutated into apathy. Or “acedia”, from the Latin and Greek, defined as indifference, spiritual or mental sloth. I’m a sloth.
Isn’t that one of the seven deadly sins???
Nonetheless, I’ll take ennui over panic any day.
I’m going to assume that this condition is temporary, a phase. Besides, it’s a beautiful spring day. I will sit on my screened-in porch and finish reading Little Failure by Gary Shteyngart, which I think is hilarious.