Humans of ME/CFS
I was 14 when I became sick with ME/CFS. My dad had been diagnosed with it the previous year, and my mum had been symptomatic for years. So, they were very supportive and understanding. Although we were fairly certain that I had ME/CFS, it took over 4 years and severe illness before I got my definitive diagnosis. The treatment I had at the time helped and I gradually went into remission. I had two children, studied, and spent 4 years working with a mission in PNG. Although I had some struggles in my health, for the most part I remained in a state of remission. However, in 2006 my husband, who had been my support and the key reason for maintaining my health, became chronically ill himself. I battled on for almost three years trying to be both mum and dad. Gradually, I worsened until I finally went into a major relapse. In the six years since that time, my health has been in a pattern of steady decline. I thought I lost so much when I was sick as a teenager – school, friends, hobbies, and a normal life. These things loom large in the life of the young, so my feelings of loss and grief are understandable. But, the losses I have felt after my relapse seem so much greater – the inability to parent, to provide for my family, to care for my home. It creates a whole new sense of failure when you cannot be there for the people you love. Although some people experience remission after severe ME, at 43 years of age I am not expecting the sort of remission experience I had as a young person. But, I do appreciate what I have – a home, family, a wonderful doctor, and technology that enables me to still connect with the world. I am grateful for the health I do have. I am not bed-bound. I can still get up, read a book, enjoy my animals, and spend time with my husband. It is true that my life is limited, but I am making the best life I can within my boundaries.