I am a preoperative, female-to-male-to-female transsexual, born Intersex, who is totally disabled with SEID/ME/CFS. (The transsexual label is in reference to my being "modified" w/o my consent to force binary sexual conformity as a newborn, my living in that state until I realized something was wrong, searching for the answer and making the decision to correct the original mistake.)
I believe my date of awareness that something major was "different" was in November, 1987. It was after a severe auto accident that I began to notice that physical activities I used to perform without my stamina being affected suddenly caused extreme fatigue.
In the summer of 1998, my employer noticed I was becoming more confused, irritable, and that my memory suffered. It was their recommendation that I seek medical attention. That day was the last that I worked.
After leaving the military, in the late '70s, I noticed an increasing difficulty in my energy levels. It was slight, most noticeable when doing one of my favorite activities at that time: dancing, roller skating, or hiking. It increasingly became worse, but I never thought to seek medical attention, even after a serious episode of malaise, in the mid '80s, as I hiked from a parking lot to the Appalachian Trail in Maryland.
In the beginning of 2013, I began noticing problems with swallowing, temperature regulation and ataxic breathing. As of December 2014, I have twice been given extensive psychiatric, cardiac, neurological, and pulmonary assessments which are all normal.
I was given an autonomic dysfunction (autonomic dysfunction, also call dysautonomia, is a sub-specialty of neurology) assessment in December 2014 and the results of the initial assement found abnormalities.
My primary medical concern at this time is my ataxic breathing, which causes me to stop breathing even when just sitting but becomes much worse with any voluntary or involuntary exertion.
I am currently seeking to mitigate this particular symptom as it seems to have the most negative effect of daily living.