Jen in her interviews always makes me think. I thought this, from the Refinery interview - http://www.refinery29.com/2017/09/170256/unrest-movie-chronic-fatigue-syndrome-woman - was very interesting
This reminds me a lot of Julie Rehmeyer and her mold issues. Suddenly, very suddenly often, her body would just completely shut down. Sometimes she was paralzyed.
That doesn't happen to me. My "crashes" are not sudden - they're more like a slowly building fire - - usually hitting their peak the next day or the day after that in which I've done too much. When its gets bad, all systems - don't work as well - it's like a complete functional meltdown - with difficulty moving and thinking.
Fortunately, I've never gotten this bad:
I'm just in a lot of pain, I'm experiencing lots of symptoms but I wouldn't say that weakness is the main thing; it's there but it's more pain for me - every movement is painful .
The fact that Jen persisted despite the fear she must have experienced shows a) how courageous she is and b) demonstrates a remarkable commitment to get her story out and making a difference.
Then there's the remarkable Omar - who has been so supportive and who's been able to put their journey in the context of an adventure! What a wonderful way for him to approach this difficult situation.
We usually view ME/CFS as a horrible burden or something that is very wrong that has been foisted on us. We certainly often feel victimized by it - but an alternate perspective might be viewing it as this kind of weird, challenging adventure in which we learn how to be as whole and alive as possible even in difficulties it presents...
Look at Toni Bernhard. ME/CFS really tested her Buddhist practices but in the end they worked to relieve her, and she used them to assist others in learning how to manage their diseases as successfully as possible. Not everyone can write a book, obviously, but we can attempt to put ME/CFS in a different context than just being a horrible problem. Maybe an adventure in learning how to squeak out value, appreciation and love even while being denied so much (???)
This reminds me a lot of Julie Rehmeyer and her mold issues. Suddenly, very suddenly often, her body would just completely shut down. Sometimes she was paralzyed.
That doesn't happen to me. My "crashes" are not sudden - they're more like a slowly building fire - - usually hitting their peak the next day or the day after that in which I've done too much. When its gets bad, all systems - don't work as well - it's like a complete functional meltdown - with difficulty moving and thinking.
Fortunately, I've never gotten this bad:
I'm just in a lot of pain, I'm experiencing lots of symptoms but I wouldn't say that weakness is the main thing; it's there but it's more pain for me - every movement is painful .
The fact that Jen persisted despite the fear she must have experienced shows a) how courageous she is and b) demonstrates a remarkable commitment to get her story out and making a difference.
Then there's the remarkable Omar - who has been so supportive and who's been able to put their journey in the context of an adventure! What a wonderful way for him to approach this difficult situation.
We usually view ME/CFS as a horrible burden or something that is very wrong that has been foisted on us. We certainly often feel victimized by it - but an alternate perspective might be viewing it as this kind of weird, challenging adventure in which we learn how to be as whole and alive as possible even in difficulties it presents...
Look at Toni Bernhard. ME/CFS really tested her Buddhist practices but in the end they worked to relieve her, and she used them to assist others in learning how to manage their diseases as successfully as possible. Not everyone can write a book, obviously, but we can attempt to put ME/CFS in a different context than just being a horrible problem. Maybe an adventure in learning how to squeak out value, appreciation and love even while being denied so much (???)
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