August 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 want them to matter to the rest of the world too.
August 8th is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis. It's a day that is intended to bring attention to those who are most invisible in our ME/CFS community. It is a time when we remember and honour those who have passed away without cure or respite, and those who continue to live in the dark and silence.
It would only make sense that those of us who are not so ill are the faces you...
Lots of restrictions hamper us who live with ME/CFS. Yet many of us long to be able to take action during this heightened era of the Black Lives Matter movement. Things are further complicated by the fact that this is happening smack in the middle of the COVID-19 pandemic.
At first glance BLM and COVID may not seem connected but they are. I can't identify the underlying dynamics of this surprising partnership. That is for the philosophers, the politicos and sociologists to decipher for us. But one thing is certain — they are both all over the world. Both are sweeping the planet.
And then there's ME/ CFS ... This is an acronym that REALLY won't seem connected to the other two. At least not for the normally healthy world who really didn't notice us before. Despite the fact that we with ME/CFS are a...
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 then. It was a lonely and frightening time. And then I stumbled upon Phoenix Rising with its articles and its forums.
No longer alone. I can't describe what that meant to me. That is something I, and all the members of Phoenix Rising, want for everyone who deals with ME/CFS as a sick person and/or caregiver. We really want everyone to recuperate fully and forever. But in the meantime, we take full aim at nobody being alone in their illness.
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 hated being forced to stay at home and away from the outside world for extended periods of time. In my case, this has been going on for years.
Facing great uncertainty
Now, though there is an odd benefit to this experience of having been sidelined for such long stretches. Unlike many normally healthy people being faced with self-isolating, I know how to do this. I know that it is frustrating and limiting but oh yes! I know that it can be done.
I think with sympathy about those whose finances are in jeopardy, who aren't sure...
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 organizing, I can only deal with a couple of weeks at a time. But I am not one of those people who has a One Year Plan, a Five Year Plan ... and I can't even conceive of anything further ahead than that.
I envy those people who do this, quite frankly. But ... my brain can't handle it and I'm afraid to look forward. And besides that, any plans I might make are liable to be overturned against my will at a moment's notice.
Starting a day or two before any appointment or coffee date or family event, I begin hoping that I won't get up crippled or addled, and...
Living 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 bout of frightening symptoms which disappeared six week later as mysteriously as they had arrived.
We had five children between two years and 10 years of age. Life was frightening and unstable and unpredictable. We felt like we were hanging over a precipice and our ability to protect and care for our children was in jeopardy.
Our furnace had broken down. Repairing and fueling the thing was far beyond our means so my already-injured husband re-injured his ribs day in and day out as he chopped wood for our two wood...
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 the disappearance of light.
Just to make things more interesting many parts of the continent, including my own, have recently plunged off the precipice of a change from Daylight Savings Time. At that point the gentle receding of daylight turns into a body slam. Not a couple of minutes' further loss each day but the hammer blow of night fall an hour earlier than we're prepared for.
Sounds kind of melodramatic, I suppose. But I tell you for me, it's a melodramatic time encroaching. And I know I'm not the only one.
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 not be aware of. Some people living with disabilities might still be quite functional. Or then again they may not. Many fall somewhere in between.
Some are able to work, but have no energy at the end of their work day. Others can only hold down a part-time job but manage to take care of their daily personal needs. And then others need help in their day-to-day lives. Many invisible disabilities alter life substantially.
According to the 1994-1995 Survey of Income and Program Participation...
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 amount of what I'll call white space necessary to get through a day without falling on my face.
If I'm doing things right, I might be able to go visit my dad at his nursing home for half an hour in the morning, maybe even a few times in a week. I might even be able to spend half an hour doing some errands.
But then I'd better have a couple of hours with no demands after that. And it would be even better if I had nothing else going on till I make dinner. And best if the evening has no obligations at the end of such a "busy" day.
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 away without cure or respite, and those who continue to live in dark and silent solitude.
Our first Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis was August 8th, 2013, launched by the 25% M.E. Group. The concept for this day originated with Diane, whose daughter Lili was severely ill with ME/CFS. Diane tells Lili's story here.
The date August 8th was chosen by the 25% M.E. Group because it was Sophia Mirza's birthday.
Do You Have to Travel Far for ME/CFS Medical Visits?
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 for days, particularly if a specialist is involved.
Even a few minutes in the back seat of a car, lying down with eyes closed, can be crash-inducing for those who are severely ill -- that is, the people who need medical help the most.
Ironic, isn't it?
Consider having two people accompany the patient for the journey, if at all possible. That way the person with ME/CFS is surrounded by...
The Crash that Follows the Push of ME/CFS and FM Awareness Day
by Jody Smith
It's been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill people and the people who care about us make bigger ripples in bigger ponds for ME/CFS awareness.
People have used up their last brain cells and spent their allotment of energy for this day and for the whole month of May. Of course, there's a price to be paid.
There has been a deep calm — or at least, a lack of action — here in my house, and I think in the homes of many members of our ME/CFS community. I attribute this to the push/crash that so often surrounds our May 12 International ME/CFS and FM...
May 12, 2019 Is International ME/CFS and FM Awareness Day
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 year marks 27 years since our Day's inception. That was also the year that I first became ill with ME/CFS. As of May 12, 2009, I had only been healthy enough to be back online for a matter of weeks. I had never heard of our Day. But I gradually got caught up.
I started writing about International ME/CFS and FM Awareness Day a couple of years later. And back then it was easier to do so in a way. Not that there was a lot of information online about it at least not that I could find. But something started to...
Why Is it so Hard to Learn New Things With ME/CFS?
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 tend to win.
I used to be pretty smart, and a darned good multi-tasker. Just sayin'. I could give homeschooling advice on the phone while sorting out two or three squabbling kids, writing notes to myself and making lunch, and still have brain-space to spare. That all changed with ME/CFS.
I know that everyone runs into snags when they're learning something new, or revisiting something they used to do. The accompanying challenges that I deal...
Oh, how I love music! This magic can lift our spirits and calm our weary minds. Maybe it can even help us heal. Goodness knows, we who live with ME/CFS need these things. We're probably not getting much of this elsewhere. So if music is so good for us, why is it so hard to have it in our lives? Why, for many of us, is music so exhausting?
Sorry, I have no real answers to these questions. Just more stories.
I think I was a fairly typical adolescent of the 1970s. I spent as much time attached to my little transistor radio as I could. Like many teenagers, I didn't have a great deal of control over my life. I didn't like school and I immersed myself as much as possible in a world of music.
I spent time with friends who were musicians. I lived with a musician for five years starting in University. We often had...
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Take my family just as one example. I remind myself that my life used to be much harder. I don't have to worry that our bills can't be paid or that we can't feed our family. I no longer deal with the kind of pain, cognitive dysfunction and neurological weirdness and terror spawned by ME/CFS that I used to on a daily basis.
Listen, I'm grateful for the respite. But that doesn't erase the losses and their consequences and scars. It doesn't magically remove the boot print of ME/CFS and the poverty and the isolation...
Our Newly Ill Face Their First Holiday Season with ME/CFS
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.
For the newly ill, though, life is suddenly full of ominous shadows and question marks. I'm betting all of us old ME/CFS veterans can remember the first time everything was ripped away, regardless of how many years ago it happened. There's no pain quite like that first onslaught.
I remember the Herculean challenge in my early stage of illness of trying to be a mother and wife at Christmas time. I used to bake and decorate and do the holiday shopping. I...
ME/CFS and the Change of Seasons: How Does This Affect You?
by Jody Smith
The advent of autumn can hit Jody Smith pretty hard. She's learned a few ways to lessen the damage every year. How do you handle the change of seasons?
Summer is my best season, hands down. Fewer ME/CFS symptoms get in my way. After a while, I tend to forget that this is a summer hiatus ... but I am reminded around the end of August or early September.
And that's because the subtle but inexorable ME/CFS decline would begin. The lessening of hours of light, the warmth dissipating make for an unpleasant picture of what happens to me every autumn.
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Can you read these words I've written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn't see or hear me. I'd be behind a closed door in my bed, trying to block out any sound or light.
Even if you were in the same house with such a person you might not see or hear them. They are likely busy focusing on breathing in and out. You'd be surprised how much work that can be...
This section contains all the articles that have been published by Phoenix Rising over the years. As you will see if you browse here, some of the articles are outdated--either the research has been superseded or retracted or the article features an event or campaign that is now in the rear-view mirror.
To make the currently relevant articles more prominent, we would like to create an archive section where we could house articles that are part of our history but are no longer current enough for members to want to comment on them.
If you would like to volunteer to work on this--at your own pace, with no deadline--please write to me through a conversation. This is a fun job--browsing through history.