Tag Archives: coping

Guest Post: Sickaversary

My friend, Jenny R, wrote these profound words about her sickaversary. 10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it: I want to write something incredibly profound and moving … Continue reading

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Book Review: Through the Shadowlands

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to … Continue reading

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Book Review: Growing Gills

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but … Continue reading

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Another Reason to Stay

My Mom played the cello every day, even while enduring chemotherapy. Her last lesson was less than two months before she died. Mom loved the cello, but I never really understood her dedication. Even when I took piano lessons as … Continue reading

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The Wall of Nope

I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading

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Still #MillionsMissing

Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading

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Pretty Much the Worst

One of the worst things someone said to me recently about my disability was: With all the stuff you’re doing, you work just as hard as someone working full time. The charitable and loving way to interpret this statement is: … Continue reading

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DIY Brain Rehab

Cognitive difficulties are part and parcel of ME/CFS. Brain fog, memory problems, difficulty with focus and attention, and reduced processing speed are just a few of the deficits we deal with every day. And cognitive effort can cause post-exertional malaise … Continue reading

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Brilliant Scientist Among the #MillionsMissing

My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing. If you want a tiny peek into what I live with every day, … Continue reading

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I Am Among the #MillionsMissing

I miss hiking. Getting into the woods, to the enveloping strength of nature, was my favorite thing to do. I wanted to through-hike the Appalachian Trail. I miss more weddings, graduations, and funerals than I can count. I miss having … Continue reading

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