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
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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
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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 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
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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 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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by Jody Smith The ME/CFS community is all too familiar with the realities of invisible disabilities. As a matter of fact we are rife with them. For this reason, we’re happy to make some noise for Invisible Disabilities Week. If you have an invisible disability, you’re living with one or more physical, mental or neurological challenges that other people might
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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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August 8th, 2019: Understanding and Remembrance Day for Severe ME by Jody Smith We in the ME/CFS community mark August 8th, 2019, on our calendars and in our hearts. On Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis, we seek to increase awareness about what our most severely ill endure. And we remember and honour those who have passed
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by Jody Smith One of the things that can strike fear into the heart of a person with ME/CFS is the prospect of going to the doctor. Worse yet is the ordeal of having to travel a long distance for such an appointment. An hour or two traveling is bad enough but sometimes it’s necessary to be on the move
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by Jody Smith International ME/CFS and FM Awareness Day 2019 has grown from an idea conceived by Thomas Hennessy, Jr. back in 1992. He chose the date of May 12 because it was the birthday of army nurse and Red Cross founder Florence Nightingale, who lived with an unidentified chronic illness for the last 50 years of her life. This
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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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