Humans of ME/CFS

I have suffered from CFS for nearly eight years. I was in my early 50s, with a successful career in IT and a rewarding life. That all changed after a bout of what I thought was the flu – I was left with constant headaches, fatigue, balance problems and brain fog. I went from a classic Type A, always on the go from early morning to late night, seven days a week, to barely being able to get up and shower in the mornings, laying down most of the day and, for the first time since childhood, taking naps during the day. It took me years to try to accept that I was seriously ill and unlikely to get better. I still do not completely accept it today.

I became depressed after we lost everything we had worked for all our lives. When I hit bottom, I was watching Stephen King’s “The Shawshank Redemption” and a line I’d heard and read many times before spoke to me with new meaning: “I guess it comes down to a simple choice, really. Get busy living or get busy dying.” I realized that while my previous life might be over, I still had the rest of my life to live, if I chose to get busy living. Over the next three years, I wrote two novels dealing with a fictional character whom I put through the same hell of CFS that I’d gone through. While my books were published, they certainly aren’t best sellers. However, I discovered the important thing was that writing the novels had helped me through my own darkness and, like the hero of my books, I was beginning to come to terms with my illness and the severe limitations it has placed on my life.

Today, I am able to function on a limited basis if I manage my daily activities. I have good days and bad days and when I forget that I can’t do everything I used to do, I have a number of bad days in a row. Unlike some CFS sufferers, I am surrounded by a loving spouse and family, who understand my illness (often better than I do) and give me tremendous support. That said, there’s not a day goes by that I don’t miss my old life. I try to remind myself every day that I’m more fortunate than many CFS sufferers – most days I’m able to shower and do limited chores around the house. But that’s cold comfort. I still find myself occasionally wishing I had a “real disease”. It’s not that I want to die or be worse off than I am. It’s just the old “but you don’t look sick” attitude that becomes so exhausting. Ultimately, I view my CFS as another challenge to be faced. When I get overwhelmed, I try to remember another quote: “I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much.”