by Jody Smith This year marks 31 years since Thomas Hennessy, Jr. decided that May 12th would be our ME/CFS International Awareness Day. May 12th had been the birthday of army nurse and Red Cross founder Florence Nightingale. After the significant contributions she’d made to the world, she lived with a chronic illness for the last half century of her
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A Call to Arms: 30th Anniversary of International ME/CFS & Fibromyalgia Awareness Day
by Jody Smith May 12th is a special day in the ME/CFS community. It was English army nurse Florence Nightingale’s birthday. In 1992 Thomas Hennessy, Jr. thought her birthday would be a fitting day for raising awareness for us. Why, you ask? Because Florence Nightingale was amazing. Not only did she help to create the Red Cross, and start the first
ContinueMay 12, 2021: International ME/CFS and Fibromyalgia Awareness Day
Remembering the Legacy of Awareness Day Founder Tom Hennessy, Jr. by Jody Smith I have written a few articles about May 12 over the years and usually I focus on the events and groups involved in this special ME/CFS date. I’ve always thought that it’s important that we tell our stories but this year, I’ve been struck by the importance of
ContinueHonouring the Memory of our Friend PatJ
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
ContinueHoliday Season ME/CFS Style — With a COVID Twist
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,
ContinueThe Apologizers of the ME/CFS World
by Jody Smith I’m Canadian, so I hear a lot of good-natured jokes about how Canadians apologize all the time. It’s funny in part because … in part, it’s true. But you know who else apologizes a lot? Chronically ill people. And that ain’t so funny. Now some of us were probably like that before becoming ill. But what’s particularly
ContinueAugust 8th, 2020: Understanding and Remembrance Day for Severe ME
By Jody Smith Every year we who are able do our bit to bring greater awareness to the plight of the most severely ill 25% in the ME/CFS community. Does this bring greater awareness to anyone outside of our community? I wish I knew. But we carry on in this endeavour because these precious people matter to us and we
ContinueMay 12, 2020: It’s Our International ME/CFS and FM Awareness Day
May 12, 2020: It’s Our International ME/CFS and FM Awareness Day by Jody Smith On May 12, our International ME/CFS and FM Awareness Day, I tend to look back over the years since I was first flattened by ME/CFS. Things changed for the better for me when I found my community. I’d already lived with ME/CFS for 17 years by
ContinueA Look at COVID-19 Through the Eyes of ME/CFS
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
ContinueLooking Ahead to a New Year With ME/CFS
by Jody Smith Hey, it’s the beginning of a new year. And 2020 has a nice fresh ring to it. This time of year are you thinking about the future? I’m not talking about New Year Resolutions. I ditched those years ago. Me, I have a hard time looking to the future. When it comes to scheduling and planning and
ContinueLiving With ME/CFS in the Holiday Season: Year After Year
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
ContinueOn the Absence of Light and ME/CFS
by Jody Smith On my side of the world, change is brewing. Here in North America, the cold and dark brooding of winter looms and glowers. In some areas it has already hit, hard. Temperatures dropping, days shortening … for someone like me who lives with ME/CFS and seasonal affective disorder, this is a daunting time. I am staring down
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