Wednesday, 26 October 2011

I am my mind

I'm scared shitless.

The things going on with my body are (at times) inconvenient, unpleasant, depressing, annoying and disabling... they are not terrifying though.  I am not my ability to move fast or my ability to contort into pretzel -like positions, I'm not my ability to sit still or to walk long distances, I'm not my balance or my tactile sensitivity (well maybe I am that a bit) or the strength of my grip, I'm not my energy level (though I do mourn that one).  Experiencing significant degeneration in these areas doesn't alter the core of 'me' it just makes everything harder.

For the past two years I have abjectly refused to even consider that I might have any kind of cognitive problems caused by Fibromyalgia.  There is a symptom colloquially known as "Fibro Fog" which is present for many FMS diagnosed people.  It manifests as forgetfulness, aphasia (the inability to remember words or communicate effectively), and a general inability to recall the things you are trying to recall.  I have often made the point that experiencing constant pain creates a level of distraction that increases forgetfulness, as does stress, and I have blamed any deficit in myself on these factors.

Last night I could not remember a song that I have known all my life...  I don't mean I couldn't remember the lyrics - I couldn't remember it at all, I had an aching annoying sensation of having it be on the tip of my tongue but out of reach.  I remembered where and when I had sung it on stage.  I knew when it was played at sporting events.  I knew it was stirring.  I knew everyone knows it... everyone but me.  This morning I attempted to remember it again and came up with another similar song... for a little while I thought I had solved the mystery but it didn't exactly feel right.  As the feeling of "not rightness" grew I googled surrounding subjects and found it listed in Wikipedia.  Land of Hope and Glory... not Rule Britiannia (this morning's effort) nor God Save The Queen which was all I could think of last night.  I know everyone has things like this happen to them sometimes, the more stress the worse my recall has been for the last 10 years, but I am beginning to think that this is happening more often than it should.  I walk to the kitchen to get the phone and a plastic bag and return with a plastic bag and the vague feeling of failure.  I write these blogs and reach a point where i am searching for a word and it doesn't want to come... the other day I could not remember the word "ancillary" for some reason my mind kept suggesting "incendiary" and I KNEW that was wrong.  Roget was needed to save me from that one.  Yesterday I kept thinking the gallows were called a galley... When in my adult life have I ever done this????  Anyone who knows me knows that I ALWAYS have the right word on the tip of my tongue.  I'm a walking thesaurus for Pete's sake!

I'm frightened that other aspects of my intelligence might be affected too (though I have not noticed my processing slowing down I think) - what if I don't have the gifts that earned me a slew of High Distinctions last time I was a student?

But I am just totally frightened, scared shitless and witless because I am not my body but I AM my vocabulary.  I AM my quick incisive wit.  I AM my mind! 


  1. I know exactly how you feel. One of my greatest fears is developing CNS lupus symptoms. There was a period of time in my 20s where I couldn't remember anything-- all the account numbers and phone numbers that I'd memorized years before were suddenly gone from my memory. Luckily either I learned new memorization strategies or the lapses stopped, I'm not sure which. Don't be too hard on yourself; not everything is a downward spiral, sometimes you just hit some extra large bumps in the road.

  2. Thanks for the comment Megan. I hope you are right about bumps... I also know that everyone has these moments. My mother went through a stage where every time she tried to say Budgerigar (Parakeet for Americans) the word Wallaby came out. Now she was in her late 70's but other than that she was 100% on the ball until she died at nearly 91!