I have a CFS brain. That is to say, Chronic Fatigue Syndrome has had a squashing effect on my ability to process information, whether I'm reading, listening to others speak, writing or trying to communicate.
This truncated brain has manifested itself in many different ways as I have staggered and crawled this winding and disorienting CFS path. At its worst, it has meant that I could not decipher what people were saying to me, or the sounds around me.
At those times I simply tried to stay away from as much sensory input as possible. I lived in this muffled and disorienting world for months, sometimes years at a time.
Chronic Fatigue Syndrome for me has always seemed to involve something resembling brain damage, or at the very least, a brain injury from which I am slowly and painstakingly recovering.
In the last four years, I have been regaining more of my mental faculties. I'm now able to work full-time for instance, though even this is affected by my CFS brain. I'm able to work because I can do it at home, much of it from my bedroom, and I am able to build in breaks through my work day. Work a couple of hours, rest for an hour.
It is an interesting balancing act. And there's no room for denial. I can't pretend to myself for more than a few minutes at a time that I am able to remember details and keep track of things like I used to B.C. -- Before CFS. I have therefore become very good at keeping lists. I keep track of everything by writing it down.
At first glance, this can make me seem very organized. In truth, it's just the only way I can avoid becoming lost and befuddled from one moment to the next. I consider myself fortunate though, that relying on my lists rather than my memory works as well as it does.
I can forget the most amazing, and seemingly unforgettable things. The fact that something is important is no guarantee that it will stick.
And any time someone says to me, "We talked about this, don't you remember?" I have no doubt that we really did talk about it and the fact that I have no vestige of recollection no longer seems strange.
I was trying to figure out what to write about today, realizing I could easily repeat something I'd written about once -- or more -- before. I said to my husband, "I have a CFS brain." He said, "Why don't you write about that?"
Great idea. I hope I haven't done it before because if I did, I've forgotten.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.