Humans of ME/CFS
My life totally changed on a day in May 1999. Before that day, I had been an extremely active person with a very fulfilling life. I worked as a technical editor in a research firm and had received awards for my work. I had edited a successful book written by my husband. Together with an architect, we had built our dream home. We were proud that our home had appeared in many architectural journals, commercials, and some architecture tours. I loved to travel, hiking, and go camping. We visited San Francisco and Yosemite every year. Being outdoors in nature was an important part of my life. I also loved exploring the cuisines of different countries by eating out at different ethnic restaurants. Every weekend my husband and I would go to a different part of our city and try some new food: Greek, Thai, Persian, Himalayan, Afghani, and Vietnamese. My next restaurant to try was going to be Burmese. Fifteen years later, I still have not tried that restaurant, because on that day in May, I became so severely ill that I thought I was going to die. When I saw my primary care doctor, he told me I just needed a vacation. So I saw another doctor and mentioned the possibility of Chronic Fatigue Syndrome. She said, “You know, a lot of doctors don’t believe that exists.” It was obvious that she included herself in that number. By this time, I was so ill I could hardly lift up my arm. My day consisted of lying on the sofa, not sleeping, and not able to do anything. It took every ounce of will to walk across the room and get a glass of water. But these doctors told me it was all in my head. I knew they were wrong, so I saw a specialist at UCLA, who, after looking at normal bloodwork, diagnosed me with CFS in about 20 minutes. Life has been a roller coaster since then. I was severely ill for a few years, then seemed to be getting better, so we went to San Francisco. That was a bad idea. I had a huge relapse and became virtually housebound, which is where I am at today. Up until 2 years ago, I could still go out occasionally, and even went on a cruise with my husband to celebrate our 30th wedding anniversary. Then I had another relapse, which brought about unimaginable new symptoms. Now, I am totally housebound with the exception of visits to doctors. My fatigue is so severe that I cannot talk on the phone or even talk much in person. My husband has stuck with me, for which I am eternally grateful. However, my friends? They have almost all fallen by the wayside, so my life has become very isolated. My beautifully designed home is now more like a gilded cage. I feel like I am slowly disappearing from my own life. I believe ME/CFS is a worldwide epidemic. That it's being ignored by much of the world is unconscionable.