Wednesday 19 December 2012

Why Am I Writing About ME/CFS?

“A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy.”
Lauren Bacall

When ME/CFS bulldozed its way into my life over a decade ago, I was totally unprepared for the changes it forced on all areas of my life.  There were times when I coped better than at other times, but whether I was feeling Denial or Anger, whether I was Bargaining or Depressed and even when I finally Accepted, I always had the constant desire to speak to someone who understood (even when I couldn’t actually speak!).


I quickly learned though that the only people who understood were my fellow sufferers.  There were days when the disbelief in the faces and words of my friends and family made me question my own sanity and other days when I felt like I would be crushed by the empty loneliness that had become my life.  But I was saved by strangers; some of whom became the dearest friends I have.  They understood, they knew.  I might be in Hell, but they were burning right beside me.

These brave and beautiful souls helped me so much by just sharing their stories with me.  So, here I share my story with you.  Maybe you’ve been newly diagnosed and are not sure what the future holds for you, maybe ME/CFS or any chronic illness has been the monkey on your back for so long you wonder if anything will remove it; for you I write this to say, I know you’re in Hell, but I’m right here beside you and do not question you or your symptoms because I know how you feel.  Maybe I can share some hope with you too.  For those of you who do not have a chronic illness, I want to give you some insight into what it is that us ME/CFS sufferers go through.  We are much maligned and abused but this is slowly changing.

I had started to write posts on my main website, but I felt it was time my ME/CFS side had its own blog.  I’m not claiming to be a medical expert, at the end of the day though, this is my story, the story of Jay, from me to ME back to a brand new me again.  I make it sound like the journey has ended, but in many ways, it is only just beginning.  Welcome to my wonderfully Foggy World of ME/CFS.  

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