Humans of ME/CFS

I was once an over-achiever (formerly dubbed “professional student” because of my love to learn and to conquer anything new or challenging) and overly organized, having OCD.  Now I suffer from brain fog, barely able to remember what I have to do and how to do it daily. That is, if I have the energy to get up and do anything. It started after pregnancy when I assume my immune system did not recover. I contracted mono. I do not know how many times I have had it, only that I cannot recover from it.  First, it was called chronic EBV/Mono.  I have good days and bad days and have learned to pace myself, take frequent breaks or stay bedridden.  It is not rocket science for us who have learned to live with it but to relay that to doctors is another story. I feel bad for my family more than anything else. For years (since 2008), I did not know what was going on but felt like I was dying and no one could tell me what was wrong.  Many felt like it was a psychological problem and for a while, although I could not imagine how your mind could make your body feel so bad. I have tried it all: hormones, depression meds, and removal of my thyroid, tonsils, FESS, and fusions in my cervical spine.  I have been through all the diagnoses, medications, and treatments.  I had seen improvement with a facility nearby in Arlington but they quickly closed and I have found little help since.  I still search for answers on my own but have given up on the medical community to help.  I long for the days when I was active and able and mourn for the days that I could have had with my son if I were in good health.  I, as many here, pray for the day that not only is there an accurate diagnosis but a cure for a disease that steals so much of your life and your livelihood.