Tag Archives: coping

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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How I Sleep At Night

One of the great incongruities of ME/CFS is that despite our bone-crushing brain-stealing fatigue, we are frequently unable to sleep. And if we do sleep, the quality of the sleep is very poor. This quickly sets up an escalating feedback … Continue reading

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Epic Eye Roll

I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes … Continue reading

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Saying No

How To Live Well with Chronic Pain and Illness is Toni Bernhard’s latest book. I’ve reviewed Toni’s previous books (here, here, and here), but over the course of years, Toni has become one of my most beloved friends. So while … Continue reading

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A Year of Thanks

This year has been hard, y’all. HARD. Sometimes I think that my Mom’s death took a scoop of my soul along with her. And then just over six months later, my husband (my caregiver, my best friend, my everything) had … Continue reading

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Alone in the Woods

I’m happy to share this guest post from Joe Landson. Man, can I relate to this! Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything … Continue reading

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Guest Post: Slightly Snarky

Joe Landson authors this guest post on the chasm between patient experiences and the people who need to understand them. We suffer through many devastating symptoms, but today I’m only thinking of one. It’s perhaps the most devastating effect of … Continue reading

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Laura Hillenbrand is Not Your Bitch*

Laura Hillenbrand is a New York Times best selling author, and one of the most prominent public figures to speak out about having ME/CFS. She has donated hundreds of thousands of dollars to ME/CFS research, has discussed her struggles with … Continue reading

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Guest Post: Longtime Patient, New Advocate

I am very pleased to share this guest post from Darlene Prestwich in which she shares her experiences as a new(ish) advocate. I’ve been doing this so long, sometimes I forget what it was like to jump in the deep … Continue reading

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I had it all under control. After coming down with a virus (mild flu?) in January, I got the message and seriously scaled back my activity. Joe Landson, Denise Lopez-Majano, and Claudia Goodell all came through for me in a … Continue reading

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