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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Special friend remembered

Jody

Senior Member
Messages
4,636
Location
Canada
Reading this thread now makes me realize how fortunate we are that we do have the capabilities to use the internet and be in touch with each other.
This support is HUGE, especially for people who are otherwise isolated.
To suffer so much is horrible but, to have to suffer alone and isolated is the worst.

Yup. When I first heard from her worker that contacted me through Ncubator, it was during a time when I was inundated by emails from people who read my Ncubator articles, people who were lonely and looking for support. I was really worn thin and had not been going for extended relationships, most contacts were a couple of emails and that was all I could do.

But I knew this woman was more alone than any of us. No forums, no articles, no blogs, no "alternative fringe" information just the tired old crap from the CDC ... I often pictured what we did as me sitting at the mouth of a pit, talking to someone who was in a pit, trying to give them hope, encourage them to keep on, to keep them from feeling alone.

If she'd had a computer, I probably would have given it a pass. But no virtual life? Too grim.
 

K2 for Hope

ALways Hoping
Messages
271
Location
Jacksonville, FL 32258
Jody, I love the way you are able to articulate. I can envision both, sitting on the edge of the pit, calling down to someone, "Hang On, Help is Coming" and sitting in the pit, calling up "Is Anyone Out There? Does Anyone Know I'm Dying Down Here?"

I will try to read more of your articles.

Thanks
 

Jody

Senior Member
Messages
4,636
Location
Canada
Leela,

I went to the link about Will, what a heart break. My son is 22, he has been sick fir 6 yrs with what we're calling CFS, it is similar to yet different from mine... We are lucky, my family and I because our son Jesse is getting better. Can't imagine the pain of losing him.
 

leela

Senior Member
Messages
3,290
Oh, Jody, I'm so sorry to hear about your son having his youth kidnapped for so long.
So very glad to know he's getting better! Sending love-vibes to all of you :)