On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on living with Very Severe ME … By Rachel M. Hello. I’m Rachel from Queensland, Australia. I live with Very Severe ME. My Very Severe ME is clinically confirmed, according to Myalgic Encephalomyelitis International Consensus Primer for Medical
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by Jody Smith We want to celebrate the memory of PatJ here on Phoenix Rising. Many of our members knew him as a long-time friend on these forums. We received some sorrowful news about Pat on December 29, 2020 from his sister Shannon. “I wanted to inform you that my brother Patrick Johnson of Whitehorse, Yukon, Canada ended his suffering
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By Jody Smith I have a bad history with late November and the month of December, ever since I first got ME/CFS 28 years ago. Some of that has to do with the shorter daylight hours in my hemisphere, but a lot of it is wrapped up with the encroaching Holiday Season. December plays host to a multitude of holidays,
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by Jody Smith I have been self-isolating for over two weeks now. Not because of COVID-19. At least, not at first. Like many of you, I spend a great deal of time in my house because of ME/CFS. I was housebound due to a resurgence of ME/CFS symptoms since the beginning of March. And like many of you, I have
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by Jody Smith This year marks my twenty-eighth holiday season fractured by ME/CFS. Some years have been better, some worse. All of them have been thrown off kilter in one form or another for me and my family. My first Christmas marred by ME/CFS was in 1992. My husband had had fibromyalgia for four years. That spring I’d had a
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by Jody Smith There just aren’t enough hours in the day for the person with ME/CFS. At least, it’s been like this for me. It’s not that I’m so terribly busy. Indeed, I am not. Not like I used to be busy, before illness. The complicating factor and really, the only factor I have any control over, is the
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by Jody Smith On good days, I mostly operate on cruise control, with the occasional moment of brilliance and quite a bit of vegetative regeneration. I can handle most things especially if they are routine and familiar. Bring in something new, though, or something I haven’t dealt with for awhile and it’s a whole new ball game. One I don’t
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by Jody Smith Don’t look now! The holiday season is on its way. I’ve lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That’s beyond sad for all of us. But at least we have some idea what we’re contending with, and have learned our ways of handling it … or not.
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Jody Smith has been taken by surprise by the value of having a dog when dealing with ME/CFS … There’s been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They’ve been fairly indifferent to my presence and
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Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS … If you’re not a fan of hallucinatory drugs you’re gonna hate ME/CFS. When I first became ill in March of 1992, the feeling of altered reality inside my head, the shaking which could not be seen
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After having lived for years with ME/CFS, Jody Smith learned there’s more to this beast of an illness than she realized, and that what might help one person may not help others … When I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS. I guess I thought that whatever it
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In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course… My name is Maya, I’m 42 and live in Mid- Wales. I have had ME for
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