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Tag Archives: crash
How You Doin’?
How are you in these quaran-times, my friends? My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more … Continue reading →
Posted in Occupying
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Tagged coping, covid-19, crash, family, help, living with, pain, pandemic, PEM, quarantine, sars, suffering, volunteer
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2 Comments
Sacrifice
I’ve lost count of the number of masks I’ve sewn. More than sixty, at least. I was sewing even before the CDC recommended that everyone wear masks, because I knew that my husband and I needed them. When the official … Continue reading →
Posted in Occupying
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Tagged cop, covid-19, crash, help, pain, PEM, quarantine, sars, social isolation, volunteer
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6 Comments
Better Late Than Not At All
Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading →
Posted in Occupying, Uncategorized
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Tagged balance, coping, crash, disability, family, gratitude, grief, living with, occupy, persistence, personal, strength, stress, suffering, truth
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16 Comments
Viral
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 →
Posted in Occupying
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Tagged coping, crash, infections, living with, occupy, post-exertional malaise, suffering
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20 Comments
Guest Post: Frustration
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 →
Posted in Occupying
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Tagged coping, crash, frustration, living with, occupy, post-exertional malaise, speaking out, stress, suffering
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29 Comments
The Finger
Last week, my body gave me the finger. I can’t even say I didn’t deserve it. After more than 19 years, I still don’t always listen to my body and this makes her very, very angry with me. I’ve previously … Continue reading →
Posted in Occupying
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Tagged coping, crash, living with, occupy, post-exertional malaise, suffering
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44 Comments
I Thank You
When I uploaded my Crash Day 3 video on Monday, I was scared. In fact, I almost didn’t do it. I can’t control the fact that I have crashes, but I can control who sees me that way. Like most … Continue reading →
Posted in Advocacy, Occupying
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Tagged action, coping, crash, FDA, living with, occupy, post-exertional malaise, speaking out, suffering
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5 Comments
Imperfect
I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been … Continue reading →
Posted in Occupying
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Tagged anaerobic, coping, CPET, crash, friends, heart rate monitor, living with, occupy, pacing, post-exertional malaise, support
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11 Comments
What a Crash Looks Like
On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of … Continue reading →