Saturday, October 27, 2012

From the fringe

I wrote this in February 2012. One of my readers, who is also struggling with severe chronic illness, recently commented that my stories about my life make me seem remarkably 'normal' compared to her life. I told her that I don't usually write about the hard times unless I have some realization that I think may have universal application. The truth is I prefer writing about the fun stuff because it is fun and it makes people laugh. It makes me laugh.

But just to make it clear to my confused readers and maybe to remind myself here are a couple of things I wrote earlier this year:

From the fringe. My life was rich and full: family, career, recreational sports and friends. It dissolved in about a year. I was 35 yrs old.  Following a back injury and a nasty flu like virus I crept back to work. I have been reminded of that Virus everyday for 16 yrs because I really have never felt good since then. The fever and chills went away. The achiness and fatigue never left and my immune system has struggled since. It moved from fully participating in society to living on the fringes. The medical community and society are baffled by what is going on with me. Treatments are few and far between and the drug side effects are arguably as bad as the illness. Relationships suffer, working becomes impossible. Finding a reason to go on every day becomes the number one challenge. It amazes me that there is not mass suicide with this illness. Where I used to find self value in the offspring I produced, by the work that I did- now I have to look elsewhere- inside. I have to trust that I have value because I exist, even in this compromised state. My small daily accomplishments - like doing the dishes or going for a walk- are what defines my success. Many days my accomplishment is simply making it through the day without killing myself. Many days are lost to forfeit because the faculties needed don't show up. There is grief every day. On the good days it is over the realization that that is as good as it gets. On the bad days it is utter sadness of the waste of time. Children grow up and maintain their distance. Family conversation ebbs away with the realization that the former me is not coming back. My body has been taken over and I have become unrecognizable. 


I get it ma
Give life half a chance
I know it hurts
But if you go like this 
Your life will have been meaningless.

Ya but if you go like that
Give me half a chance
Wth? When did I write this???

Oct 28 2012 still have no clue when I wrote this. Suspect someone snuck in my phone and wrote it. But fibro fog has created memory blank spots before. 

Dear readers, 

I dream for the day when my illness is recognized and that there is a cure. 

Peace be with you and all that jazz.....

Copyright (c) Chardale Irvine 2012. All rights reserved. 

1 comment:

  1. It is so painful to watch you suffer but that gives me even greater joy when you are having a good day. I appreciate each and every day I can kiss you good night and hope that there is a cure for you just around the bend. I love you more than I can express. Hubby