Humans of ME/CFS
I played trumpet, sang choir, captained the hockey team, sailed and climbed mountains. I traveled the world, sometimes with young children, and I achieved degrees and was busy and always managed to keep going, no matter what. And that was the problem. Because I kept feeling more and more like I was wading through treacle and then I would start to feel like I was blacking out—so bad was the intolerable exhaustion that would make me unable to get out of bed.
Way back I discovered that the stress of academia was not good for me so I became a yoga and meditation teacher. I was told I had PTSD. So for years I struggled and tried to make myself swim and do zumba and yoga four times a week and teach six yoga classes and I got the initial high from the exercise but then would wake up in the night feeling like I had been savagely beaten up. Migraines started in 2006, the same year I began to be bullied by my boss.
June 2009 I was verbally attacked several times in front of my colleagues by my boss causing a total breakdown where I continued working but was inwardly fracturing with the strain, pain and stress. Three years later I could no longer even stand to work. All my symptoms were put down to PTSD. November 2015 I was diagnosed, to my surprise (duh!) with ME/CFS, which suddenly made sense of the confusion that my life had become. Now I try to find a baseline (quite hopeless at it so far—always still doing too much) and go out to a choir once a week and have given up all aerobic physical stuff as I just can’t bear the beaten up sensation that follows it.
I do sail though, which is ocean sailing. I get my husband to haul several sails up and then I rest for several hours looking at the sea and the sky whilst the boat sails along happily. Perfect. And I write more. I write poems and short stories. And I keep reminding myself that Churchill wrote from his bed and so did Florence Nightingale, and so I keep abreast of the topics I am interested via my laptop sitting propped up in bed. I research and study mindfulness, self-compassion and neuroplasticity. I even gave a presentation at a conference last November. (Wiped me out for weeks afterwards.)
I am still astonished how physically debilitating ME is. I could rush out of the house right now if one of my kids was in danger. But I would be in pain all over and feel that awful blacking out feeling quite soon after the exertion. And I hate that. But you know, I am trying to learn to be kind to my condition and still find ways to live an interesting and fulfilling life. I have had to learn that my little energy is precious and should be used well.