I have struggled with CFS every day of my life since 1995. I remember the day that it hit. It changed my world and I have been in a living hell ever since. Every medical professional Ive seen have said,We dont know what it is, theres nothing we can do for you. This is the wrong time in history for CFS sufferers. Thank God theres now proof and possible causation. It may not help me but maybe the future will hold more than wasted lives of total exhaustion just trying to get through 8 hours of any given day for those who get it in the future. With its concomitant nasty all day, everyday painful cousin, fibromyalgia, and the continual feeling that your mind is going, every day is a half asses attempt of trying to appear normal. The first thing you learn is that everyone cares the first time you mention it, but not the second. They have lives and problems of their own. The pain, the sadness, the gawd-awful fatigue is not their problem. Eventually, I sat in front of the mirror, training my face to look neutral and learning how to laugh at will so that I wouldnt bring others down. Im so good at it now, Ive had people (whom I dont know) tell me to stop laughing, that I was annoying them. That is a tribute to my acting ability- THANK YOU! Almost everyday ! want to give my life force to someone who could use it and just let me fade away because most days it is too difficult to do the dishes, more less feel as though my life has any purpose or meaning. Fun? I wish I could have some of that. I pray for a little nation house, cause thats all I could clean, and I see my life shrinking. But, TODAY, for all of us who thought we were nuts, WE ARE NOT!!! Thats the good news. The bad news is that we have lived this pain-filled, energy-less, inauthentic half life, trying not to complain, overdoing and paying for it for days, taking every vitamin and snake oil on the market, searching everyday for a cure, COMPLETELY SANE!!!!! And, of course, do you know what CFS patients always say? Well, there are people worse off than I. And then we try to figure out which are our best hours during the day so that we can volunteer what little we have for that person. If there is a person with CFS in your world, be kind. CFS/fibro is a living hell, purgetory on good days, and with no end of the effort you have to put in to look and act normal for even a few hours a day. May God bless this research and all research that cures and eases suffering.
Posted on: Thu, 30 Oct 2014 17:51:24 +0000
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