I’ve been sick with Myalgic Encephalomyelitis (ME/CFS) since 2001. Myalgic (muscle pain) Encephalomyelitis (inflammation of the brain and spinal cord) was commonly called Chronic Fatigue Syndrome. I find the name (CFS) greatly under-represents what this illness truly is. Calling it Chronic Fatigue makes it incredibly easy to dismiss and minimize.
Living with ME/CFS since 2001, I have learned a lot about myself and this illness. If you’re wondering how to interact with me, I want to be believed and trusted, and for others to respect the boundaries I need. I did not write this to garner pity, unsolicited medical advice (nobody wants this!), or to be treated like I don’t understand my own illness. I am open to questions and conversation (no MLM’s or “essential oils” please).
Explaining to people what this illness looks like can be difficult and draining, so I rarely dive deep in my explanations. But for multiple reasons I felt like now is the time to share in my experience.
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