I have been struggling to think of a good title for this post for days, even though I had only written it in my head (I write so much that way!). It's something I've been wanting to write about, but I still don't know what to call it, so I will just jump in.
I just spent three weeks in a severe crash, feeling worse on some days than I have in years. I am now feeling much better and have resumed my own version of "normal," and I have been struck - not for the first time - by the stark difference in my mental state between a crash and a "good" day. I'm not talking about the emotional effects of severe illness, though those are very powerful as well.
No, what I've observed, yet again, is a startling difference in mental energy that is intrinsically related to immeasurable things like motivation, drive, and desire. When I am severely ill with physical symptoms that are hard to describe - exhaustion, lack of energy, that all-over flu-like achiness - there is also a mental sluggishness present, a lack of motivation that makes accomplishing anything at all (regardless of the physical symptoms) a monumental struggle.
Cognitive dysfunction has never been a big problem for me, not even at my worst times in the past 10 years of illness. Most of the time, my only sign of cognitive problems is some mild aphasia (word-finding difficulty) which is annoying for someone who makes her living writing but doesn't seriously interfere with my life, thanks to Word's built-in thesaurus. When I am severely crashed, I do experience some slightly increased brain fog, but, again, nothing severe. I have always been grateful for this blessing.
But this lack of mental energy (isn't there some official term for this? I guess it might be malaise, but I really hate that word; certainly it's not the dreaded F word) is overwhelming when I am crashed. For instance, let's say that on a bad crash day (like I experienced last week), I have cut my to-do list down to just three essential tasks - calling a doctor's office to make an appointment for my son, filling out a form and faxing it to my son's school for a scholarship application, and writing an e-mail to my editor. The lack of motivation and drive is so all-encompassing that it could take me days just to accomplish those few simple tasks.
Yes, I am feeling exhausted and achy, but it's not those physical symptoms keeping me from doing anything. It's a total lack of mental energy. This is something almost impossible to describe to healthy people (including doctors), unless perhaps they have recently experienced a bad flu. When I'm in that state, I dread each coming day, facing that lack of drive and motivation, trying to get something done when I feel like my head is encased in Jell-o.
In contrast, when I finally feel like myself again (still with CFS but not so badly crashed), I am stunned by the sudden feeling of mental clarity, by the desire and the simple will to accomplish something. I wake feeling glad to be awake, looking forward to the day to come. I feel motivated and productive and happy. It is such a stark change to how I feel when I am crashed that I feel full of joy.
My poor son is filled with this feeling, this lack of mental energy, every single day lately and is trying to finish his senior year of high school encompassed by this mental lethargy.
I think this is probably the worst part of ME/CFS, though it's something that is rarely talked about, unnamed, and never examined by doctors or researchers.