Tag Archives: living with

DIY Brain Rehab

Posted on July 28, 2016 by Jennie Spotila

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 →

Posted in Occupying | Tagged , , , , , , , | 40 Comments

Naming

Posted on July 22, 2016 by Jennie Spotila

Do you notice anything different at the top of the page? Occupy CFS is now Occupy M.E. I thought long and hard about the change, and would like to share my reasoning. First of all, CFS is a crappy name. … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , | 26 Comments

The Caffeine Disaster

Posted on June 22, 2016 by Jennie Spotila

I have a deep emotional bond with coffee. After I regained the ability to drink it without it tearing up my gut, coffee and I took our relationship to a new level. I switched to a Chemex, and found locally … Continue reading →

Posted in Occupying | Tagged , , , , , , | 28 Comments

Brilliant Scientist Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

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 →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , | 17 Comments

I Am Among the #MillionsMissing

Posted on May 25, 2016 by Jennie Spotila

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 →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , | 13 Comments

#MillionsMissing

Posted on May 10, 2016 by Jennie Spotila

For as long as I have been an ME/CFS advocate, I have heard people say we should protest/take to the streets/be more like ACT UP. But for the most part, demonstrations have been small (even one woman) shows. That is … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , | 9 Comments

How I Sleep At Night

Posted on April 22, 2016 by Jennie Spotila

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 →

Posted in Occupying | Tagged , , , | 35 Comments

Epic Eye Roll

Posted on April 2, 2016 by Jennie Spotila

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 →

Posted in Advocacy, Commentary, Occupying | Tagged , , , , , , , , , , | 30 Comments

We Are All Noncompliant

Posted on March 2, 2016 by Jennie Spotila

I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old. Enter Bitch Planet, a … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 20 Comments

Collaborative Effort Announced

Posted on December 22, 2015 by Jennie Spotila

I take the responsibility of advocacy very seriously, and collaborating with others is part of my philosophy. This effort is an organic evolution of work by many other advocates that have come before us. More than ever before, 2015 has … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 4 Comments