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Welcome to Phoenix Rising!
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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Blog entries by Jody
May 12, 2013 is International ME/CFS and FM Awareness Day. ME is the acronym for myalgic encephalomyelitis. CFS stands for chronic fatigue syndrome. FM is the short form for fibromyalgia.
In researching online for this article, I was disappointed by what I found ... or didn't find. I...
My friend just died. Lynda suffered from a number of autoimmune conditions, not the least of which was Chronic Fatigue Syndrome.
CFS descended upon her two decades ago, after she was exposed to someone with a bad virus.
They got better, and their life went on. Lynda didn't recover, and her...
I wrote this article for www.empowher.com --
1. I can stay out of bed during the day.
Before Chronic Fatigue Syndrome led me to my naturopath Dr. Kelly Upcott, I was spending anywhere from 5 to 8 hours during the daytime in bed. I was also sleeping 8 to 10 hours at night.
The rest periods...
(written for EmpowHER.com http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-10-things-people-misunderstand-about-fatig)
I think we can all agree that Chronic Fatigue Syndrome is a stupid name for an incapacitating illness. I think we can also agree that it is...
Its not enough for me to let you know I have Chronic Fatigue Syndrome and I dont feel good.
I want to give you details, about an astonishing variety of stultifying symptoms that are real life-stoppers. And I want you to be haunted by a chronic with a face. If its me, well and good. If its...
My son Jesse and I went to my moms for an early Mothers Day visit this afternoon. Though we only live a three minute drive away from her, this is the first time since around Christmas that Jesse has been able to make this trip.
I have been over to see her a few times since the New Year, but...
It is a fearsome thing to find oneself living outside the camp.
As the sickness of Chronic Fatigue Syndrome causes the circle of life to shrink, as the chronic element reduces our contacts with other people, we find ourselves moving (or being moved) further and further away from the campfire...
During the winter, CFS seems to close in on me in a way that was not happening during the warmer months.
I am not as ill as I was last winter, but the day to day habits of my life become more closed in and insular.
While I dont have the distressing neurological symptoms from before, my...
Wednesday, October 7, 2009
The weather has turned cooler and overcast these days. Summer is over.
It seems every year that in the change of seasons from summer to fall, I experience some downturn. Some years have been worse than others. This fall so far has been, I think, the gentlest one...
Its my birthday today. I am now 54 years old.
And still recovering from CFS. Both in the long term (17 years and counting) and in the short term, from a crash that started about a month ago.
I had been hoping that with better health this year, that this couldnt happen anymore. And now I...
September 3rd marked Ncubators 4 month milestone. And then I had a crash.
We chronics use this word to indicate an ugly relapse into old symptoms, lasting anywhere from a few days to a few weeks to months to years depending on the crash.
You never know till you come out of one, what...
Monday, August 3, 2009
I was thinking about how being a chronic, we are so isolated, and some of the things I miss are so very mundane.
I miss having a friend drop by for a cup of coffee or whatever.
I miss the type of chitchat I used to have with people in my homeschool group...
Saturday, August 1, 2009
I write to my imaginary friend, the one who is always there, always wants to KNOW me. I write believing I can hear a response (my imaginary friend ALWAYS gives a response, lest I feel unloved or alone).
When I find indifference and lack of regard in the rest of...
Some animals use echolocation to orient themselves. They emit calls to the world and listen for echoes from their environment.
This helps them determine where they are, where they are going, and what if anything is near.
Here is a poignant metaphor. We call out to find our place, to see if...
How does a wealthy man get, and stay, wealthy?
He doesn't do it by spending everything he has.
Bingo, CFS'ers, Push-Crashers. All you really need to know about the role of rest and regeneration. In a nutshell.
If you keep spending your energy, ... well, it's gone, isn't it.
It...
Friday, July 24, 2009
I posted an article on Ncubator yesterday called No Disability for Jody. Since then Ive received two lovely emails from friends who were shocked to learn of my state of affairs. I appreciated these so much.
It got me thinking, though. And I want to clarify something...
Wednesday, July 22, 2009
If youve ever had a tendency to feel indispensible, a good run-in with CFS will cure you of that.
You will discover in short order that you are indeed dispensible, and possibly even forgotten, faster than you can imagine.
It is a heartbreak.
And it is a...
Monday, July 20, 2009
If an area is cordoned off and you dont heed the warning and go ahead anyway, dont be surprised if you fall through.
All those symptoms making our lives a misery? Cautionary signs weve been ignoring and then were surprised when we crash.
Our idiot lights are...
Saturday, July 18, 2009
I'd like to say I do this for the good of mankind. That that's why I write here.
I'd like mankind to be healthy and happy, don't get me wrong.
But I am not here on the net for mankind.
I am here for me.
Because the silence from the rest of the world has been...