I Am Not Alone With Myalgic Encephalomyelitis, But It Is Still Lonely



By Ali Kirby in The Mighty.


There are many ways that chronic fatigue syndrome/myalgic encephalomyelitis(CFS/ME) has affected my life. I often find myself grieving for the life I used to have. I miss hiking and kayaking and basketball and diving under the waves at the beach. But, the thing I grieve most for is my social life. My whole life I have surrounded myself with people; always had an open door policy and always room at the table. I am (or was) your typical extrovert, always loving company. Unfortunately, that has had to change. I only have enough energy to socialize in small doses and cooking a simple meal is something I can’t always manage.

I have had to become OK with my own company in a dark room for hours, days, sometimes weeks at a time. I must admit that I don’t feel like very good company. There are no jokes or stories or activities. I am far from the life of the party. I am not energetic, enthusiastic or animated. I am not the company I used to be.

There is one thing that I am. I am not just mostly alone in this darkened room, but I am lonely. And, I know as I write this that I am one of the lucky ones. I get visitors. I have a husband, two daughters, and parents who visit. They pop into my room to care for me and bring me food and medicine on my bad days. They bring news of the outside world and tell me it’s going to be ok.


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