I have had CFS since 1980, at the age of 33, and was diagnosed in 1992. For the first 25 years I would sometimes go into fairly lengthy periods of full remission; however, no longer. When remissions did occur, I was intrigued by their onset, and subsequent disappearance - it was sudden!! I particularly remember one fairly long-lasting remission that seemed to come over me in the space of less than 10 minutes. This happened another time a few years ago, but the remission only lasted 24 hours, and I have no idea why that was the case. I've had no remissions since.
For most of my journey I've refrained from telling people I have this disease because of either their condescending attitude to it, and/or their complete non-understanding of my symptoms. I finally thought of a way to describe what I'm going through that enables those with an open mind to this illness to partially understand.
For starters, you don't feel fatigued; you feel sick. Energy is depleted to the point that you don't even have a pilot light. What does that feel like? It feels like your body is shutting down. Imagine a starving person - literally, someone experiencing famine. S/he becomes weak to the point that standing, talking, thinking, let alone walking, feels like torture. This is what it's like to have CFS; at my worst I literally feel like I'm dying.
I've been lucky in that I don't generally have CFS as bad as many I read about, but living with this for the better part of 37 years makes me yearn for a cure to at least experience some quality of life before mine is over.
For most of my journey I've refrained from telling people I have this disease because of either their condescending attitude to it, and/or their complete non-understanding of my symptoms. I finally thought of a way to describe what I'm going through that enables those with an open mind to this illness to partially understand.
For starters, you don't feel fatigued; you feel sick. Energy is depleted to the point that you don't even have a pilot light. What does that feel like? It feels like your body is shutting down. Imagine a starving person - literally, someone experiencing famine. S/he becomes weak to the point that standing, talking, thinking, let alone walking, feels like torture. This is what it's like to have CFS; at my worst I literally feel like I'm dying.
I've been lucky in that I don't generally have CFS as bad as many I read about, but living with this for the better part of 37 years makes me yearn for a cure to at least experience some quality of life before mine is over.