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Millions of ME patients are missing from their lives because millions of dollars are missing in research funding and because millions of health care professionals lack education in this disease. #MillionsMissing To learn more about myalgic encephalomyelitis, go here. Please help me make my voice heard today by sharing this post.  Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing [email protected].
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I'm nursing sore triceps after pushing myself too hard when I went swimming today. It reminds me of the moment I first suspected I was ill with something worse than a cold. Boy, I'm whipped, I thought as I combed my wet hair after one of my regular hour-long swims at the YMCA. My legs are sore, even though I didn't swim as hard as usual. Swimming rarely made me sore, even after the two-hour-long swim team practices I'd done in high school. Instead, I felt physically and mentally rejuvenated by the cool and calm of the pool. That rejuvenation was one reason swimming was my favorite form of exercise. A mild cold shouldn't have affected my physical functioning that much. I told myself if I wasn't feeling better in a few more days, I'd go to the doctor. I didn't know then that it would be the first of dozens of doctor's appointments until I received my diagnosis two and a half years later... When did you first know you had a serious illness or disability? Let me know in a comment! Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing [email protected]. Chronic fatigue syndrome has a silly name that describes only one symptom of a multi-system disease. Probably everyone has long-lasting fatigue resulting from illness or life circumstances at least once in life. So, the name chronic fatigue syndrome poorly distinguishes patients with a devastating illness from the rest of the world. Then there's that word fatigue. It sounds wussy, like a smashing of fatty and league. Big whoop, a group of fat people yawning. Couldn't we use exhaustion, with that long second syllable expressing length and severity? Couldn't we use enervation, with that nerv sound pointing to central nervous system malfunction? There are better names out there, so let's use one of those instead: myalgic encephalomyelitis/encephalopathy or systemic exertion intolerance disease.  Photo credit: Marco40134, Flickr Creative Commons Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing [email protected]. |
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