Humans of ME/CFS
It started as a fever. One day I was healthy, strong, and active. The next day I was ill in a "flu" that wouldn't leave. This happened more than four years ago and that day forever will be the line between before and after.
Before, I could be active with my children, work, write novels, walk long distances, and carry home food from the stores. I could invite friends for dinner, go to church, support my husband, visit my children’s schools, and take them to their activities.
Before, I could work for eight hours, have lunch with a friend, travel by bus, cook for my family, go to the stores, do some laundry, write some letters, and take a long walk - on the same day.
Today, I usually cannot do anything of it. My symptoms are always present and get worse when I don't lie down. Fever, headaches, pain, aching lymph nodes, and the worst: an always present feeling of being ill, including a fatigue that becomes worse the more I try to fight it.
This disease, that too few doctors know, is something that cannot be fought like an unwanted fly on the window. It stays no matter what I do. And if I ignore the symptoms to leave bed and do something I have longed for, I have to pay with worse symptoms for days or weeks.
This eternal "flu" effects my loved ones and has turned our lives into something we couldn't imagine. But still, I HAVE loved ones. I have a family that supports me and friends that care for me. I have people around me who follow my struggle and contribute lot to ME/CFS research.
I do have a hope for the future. I just wish it was closer.