Humans of ME/CFS
I had it all: a wonderful marriage, a successful interior decorating business, an active social life, and several hobbies including tennis, travel, reading and entertaining. But most importantly, I had my health which allowed me to keep up with all of my interests and commitments. In September of 2013, everything changed. While on vacation, I contracted a severe ear infection from a hotel pool. After two rounds of antibiotics, the pain was worsening. I tried to forge ahead with life except that now my entire head hurt. My doctor tried helping me, but by the end of a year, I could no longer work or socialize. Just taking a shower and dressing became exhausting.
I tried everything to regain my health but instead of improving I was now developing intense muscle pain all over my body. Additionally, I experienced fevers, costochondritis (pain in the chest wall), fainting spells, interstitial cystitis brain fog, trigeminal neuralgia, and migraines. All of the above symptoms are common for sufferers of Myalgic Encephalomyelitis. I was happy to have a diagnosis, but no cure was in sight.
It has been twelve long years. On “good days,” I have a few hours of energy before I hit the wall. On those days, I try to get something accomplished like cooking and freezing food for the days when it is impossible to do anything. I am laid up on average 180 days a year. I am grateful to my husband who has supported me both emotionally and financially. Many are not as lucky as I am. Throughout this struggle, I know I am not alone. There are many others like me who lead lives of quiet desperation, yet are invisible to the outside world. I would not have imagined that such a debilitating illness existed if it had not happened to me. For those of us who once had productive, fulfilling lives, we have had to come to terms with immeasurable loss.
Unfortunately, we are too sick to advocate for ourselves. There are dedicated scientists and researchers working to find solutions, but research funds are insufficient. We need more of the best and brightest minds working towards treatment and hopefully someday a cure.
