Tag Archives: stress

Guest Post: Sickaversary

Posted on June 1, 2017 by Jennie Spotila

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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The Wall of Nope

Posted on December 7, 2016 by Jennie Spotila

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 →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , | 44 Comments

Pretty Much the Worst

Posted on September 9, 2016 by Jennie Spotila

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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Saying No

Posted on December 4, 2015 by Jennie Spotila

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 →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , | 16 Comments

21

Posted on October 9, 2015 by Jennie Spotila

October 6, 2015 was my 21st “sickaversary.” I know the date because the onset of ME/CFS in my case was so sudden and dramatic. Not a single doctor told me that I could be sick for years. Not a single … Continue reading →

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A Miracle, and a Break

Posted on August 28, 2015 by Jennie Spotila

This year has been the most difficult of my life, starting with my Mom’s passing in January. Losing her was just the first in a cascade of bad news, and I made the decision to stop maintaining that laundry list … Continue reading →

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Draft Systematic Review is UP

Posted on September 22, 2014 by Jennie Spotila

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | 7 Comments

Guest Post: Longtime Patient, New Advocate

Posted on June 30, 2014 by Jennie Spotila

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , | 12 Comments

Guest Post: Frustration

Posted on February 17, 2014 by Jennie Spotila

I continue to struggle with the crash from hell, but Denise Lopez-Majano has graciously provided a guest post. Her thoughts on ME-frustration are right on target for me this week! As a caregiver for her two adult sons, Denise is … Continue reading →

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Heart Rate and Beta Blockers

Posted on July 2, 2013 by Jennie Spotila

Beta blockers are routinely prescribed to ME/CFS patients who have orthostatic intolerance. But because of the medication’s effects on heart rate, it can be challenging to incorporate heart rate monitoring into the picture. After some uncertainty, I have managed to … Continue reading →

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