Humans of ME/CFS
I was a normal 20-year-old. I was working in a full-time job. Had just been promoted. I was active and full of life. I enjoyed swimming, the gym, exercise classes, walking, and going out with my friends. Suddenly, I could not do it anymore. I'd return from work exhausted and crash out on the sofa and that was it for the evening. It took months before I would go to my doctor.
After seeing three doctors, a neurologist, and a psychiatrist, and having many tests, I was diagnosed with ME/CFS. It was the beginning of what felt like the end of my life. I tried to carry on with work. I changed my hours and working patterns. It didn’t work and I had to admit defeat. I didn't know that 13 years later I would still be unable to work. This illness has ruined what should have been the best years of my life. My life plans have had to change. I have no career. I cannot have as many children as I would like due to sheer exhaustion. Money has to be carefully budgeted and I live in fear of my disability benefits being taken away.
I cannot work. I want to wake up feeling refreshed and ready for a busy day, not exhausted and achy like I haven't been to bed yet. It is shocking that an illness this devastating and life changing is ignored and dismissed by many. Research is essential. This is not what I envisioned for my life. I want to be normal. I want to feel like any other healthy 30-something person, not like an old woman trapped in a young person’s body. I want to go out or do an activity at home without having to calculate what it is going to cost me in pain and lack of energy.
My life has been dominated and ruined by a disease that seems to spark little interest from the government, researchers, and doctors alike. I cannot comprehend this. It is insulting to be told that it is a psychological illness. If I could have ploughed through it and thought myself better, I wouldn't have become ill in the first place. I tried that, it made me worse. I want to swim without being in pain and not have to go to bed after because it is so exhausting. I want to jump up and join in with my children when they go for a walk with their dad, not say "sorry, mummy's too tired" and wave them off as they go. I want to cook healthy meals, not use frozen food or rely on my husband to prepare it. I want my normal, healthy life back!
I could never have foreseen how my life would be. I try not to think about what I have lost as it would leave me in danger of depression again. I am sick of fighting. I am just sick and people don't seem to care!