So, I’ve been thinking of the F word lately. Not that F word, but the other one.. the one in the acronym of CFS/CFIDS. That dreaded word fatigue.
In the thick of a long standing crash, it strikes me even more deeply just how grossly inadequate a term it is for what we experience. In Hillary Johnson's Osler's Web, Dr. Mark Loveless was quoted as saying that, at their worst, "the CFIDS patient feels every day significantly the same way an AIDS patient feels two months before death.” If I were to try to capture such a feeling in a word, I’m not sure what I would use, but it wouldn’t be fatigue.
The eloquent Ms. Laura Hillenbrand (author of the best-seller Seabiscuit and long time sufferer of CFS) put it this way: “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization." Indeed.
As I was contemplating this frustrating word one morning, I wanted to attempt to give it a bit more weight and power somehow. In the process, I ended up with the idea for the following... well, poem of sorts. Please bear with me here. I have not written more than a couple poems since I was a child. This is an amateur attempt at best, but I wanted to share it anyway because this word is so often misused in relation to our disease.
F is for fierce, ferocious, feverish fatigue, it's
Flamed fingers folding over you, filling you with its
Feral, filthy fumes until you fall face forward,
Fallowed from its forbidding force. Your
Former self, physically now so fragile and frail,
Falters and fumbles, yet…
Fighting for a
Fleeting flicker of freedom.
F is for the felicity of fabulous fantasies that
Float effortlessly in the fluidity of dreams,
Fearlessly and faithfully flourishing in flight,
--LB © 2009
See how the poem is in... the shape.. of an F? And I used mostly all F words? Hello? Anyone? ;) Okay, a bit forced, but I tried. :)
Thanks to all those who left such wonderful comments of support and encouragement to me with my last post. It was so appreciated. Regretfully, my crash continues and has not yet fully abated. It's been a very rough few months, to say the least. I'm a bit concerned this may be my new CFS "normal," but I'm trying to remain as patient as possible, and as always, I continue to hope.