Humans of ME/CFS
I am a major disappointment to everyone I know. I am a worthless human being. My existence has no meaning. Why? Because Fibromyalgia, Chronic Fatigue Syndrome and chronic migraines have robbed my life of any meaning it ever had.
I’m married and have five children. My interactions with them consist mainly of when they stop by my bedroom to see me. My husband has to wait on me. Our relationship has lost all intimacy. We merely coexist.
My career ended when I could no longer make it through a day in the classroom. Teaching was my passion. It rewarded me in ways that are indescribable. I received awards and was recognized by our governor for the compassion I put in to my teaching. When a student entered my room, they were not only my student, but my child. I taught, encouraged, counseled, listened and most of all let them know there was someone in their life that cared.
What rewards do I get now? Having enough energy to take a shower. Seeing my children do well in spite of their circumstances at home.
Pain, exhaustion, and most of all incredible loneliness is all I know. I’ve lost my friends. They stopped calling when I kept canceling. I can’t tell you how many times I’ve been told, well you look all right. These are invisible illnesses that need to be recognized. Not swept under the rug.
My poor family lost their mother. I feel so guilty to burden them. They certainly didn’t ask for this either. The sadness and despair I feel is all they see. Happiness? It’s a fond memory. I cry every day. I cry for the person I used to be and so desperately want to be again.
If I had to describe my pain I would liken it to being thrown around in a tornado and landing on my head. Pain radiates through every part of my body. My migraines leave me in a dark, quiet room waiting for the jackhammer to stop drilling in my head. Some days I want to puncture a hole in the side of my head to let out the pain. It also leaves me so nauseated at times the bathroom floor is my bed.