Humans of ME/CFS

I got sick with ME/CFS twenty years ago. The journey I have taken since I got sick has been long and very hard. I feel that I went through every one of the stages of grief, experiencing anger, helplessness, and desperation. After years, I came to accept that I have a disease that is, for now, not well understood and incurable. I decided that I would not chase panaceas and cures that were a waste of my time and money. I would keep track of what doctors and researchers were doing, but I would get on with the job of living.

Before I got sick, I worked full time. I have had to rewrite my story to accommodate my change in circumstances. About fifteen years ago, I set about building a business that I could do at home and that was flexible enough to accommodate those days when I have to be in bed. Now I review, edit, and ghostwrite children’s books. Managing my work hours is a constant challenge and I have to frequently assess where my energy levels are so that I do not overdo things and crash. I am married and have a teenage daughter, so I also have to find the energy to drive my daughter to her music lessons, cook, shop, and take care of the house. Some time ago, I decided to get someone to help with the heavier housework. Being on my feet for many hours to clean the house just doesn’t work if I have to get up the next day and be productive. The one thing I have never fully let go of is exercise. I kept on trying to run and though marathons are no longer possible, I do manage to run 5ks three times a week. I even run in races, just to show myself that I can do it. Probably the best thing I have done for myself health-wise is to add Pilates to my life. This thoughtful and restorative form of exercise has really helped me get stronger and I feel better in myself after ever session. It is hard, and sometimes painful, but in the long run it is good for me.

Two years ago, I brought music back into my life. I used to play the flute when I was in school and then I did not play much at all for many years. Now I play the ukulele, spending time learning classical pieces as well as more contemporary songs. Having this creative outlet is powerful medicine. Even when I feel nauseous and achy, even when I want to curl into a ball and climb into bed, the ukulele calls me and gives me comfort for a while. The biggest threat to my wellbeing, such as it is, is to look inward to the place where the illness lives. So long as I keep looking out, being hopeful, and seeing the beauty in the world, I am okay.