Humans of ME/CFS
Mother. Athlete. Radiation Therapist. Lover of movement and freedom. These are words to describe the "old me".
January 12, 2002 was the day I woke up in my new undesired body with my new unrecognizable thought processes. My brain could no longer multiply three-digit numbers. My body could no longer run and jump and play. I lost my job. I lost friends and family who thought I should just "get out, get some sunshine, exercise, and feel better." I got depressed and cried a lot which is something I'd never done in my life.
Loving life and enjoying every second was my motto. No more. Now, it was a struggle to wash my own hair, do the dishes, and step up a single step into my home. I lost my job and got denied Social Security Disability because "she is able to run an errand". There was no explanation and no one knew what I had. I got a fairly quick diagnosis, but that still didn't explain to me how I was supposed to live this life in this new uninhabitable body.
There was no one to tell me that I would crash, have remissions, crash, and have remissions over and over again. I've had this wretched, life-altering disease for over fifteen years now. Last year, I had a crash so bad that I felt like I could possibly die from this disease. My body was so weak and I was so scared. Just lying on the couch, my heart was pounding from doing nothing. It was pounding just because I was alive and that was too much effort for my body.
For the first time in 14 years, I lost hope. I told my boyfriend, the love of my life, the one who knew me for two years before I got CFS, "I feel hopeless. I'm scared to death. I don't know what to do to help myself and there's no one who can help me."
It's taken me a year to come out of this and to get to a point where I can do my own grocery shopping. It's taken acupuncture and meditation (lots and lots of meditation!!), deep breathing, and pacing to get me back to the land of the "living".
I never want to go back to that place again, but I don't know what I can do to make that not happen. It scares me because there's no one to help me.
There's no cure because there's no cause. Find a cause and find a cure. Help me to stay alive to see my kids grow old. Don't let me die early and leave them without a mother because you didn't care enough to fund research.
My story is that I love living. I love moving and laughing and wrestling with my kids. I love to feel alive. I don't think that's too much to ask.