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 in my arms and hands and which later spread to the rest of my body, the uncertainty with which I navigated, never quite sure I could physically accomplish a walk across the floor without falling or bumping into things … these things were bizarre and alarming.… Read More
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 was that I had was what you had … what they had … what that person laying on their face over there had …
Turns out I couldn’t have been more wrong.
I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.… Read More
Jody Smith considers how things we consider beautiful can help feed a starving soul ...
I spent every day for years propped up on pillows on my bed. I could see out my window to the left. My messy closet was to the right. Looking straight ahead I saw a television, a messy desk and a dresser.
Then one year on a rare Christmas shopping expedition, my daughter Rachel the Chauffeur was with me in a department store, and as we neared a bunch of prints (pictures not fabric) I said in passing, “That’s nice.” I stood and looked for a moment at a scene of what felt like a French village.… Read More
It has been seven years since Jody Smith began seeing her Naturopath Doctor. Time then for a brief reflection on the extent to which a variety of interventions may have helped move Jody forwards in her own battle with ME/CFS…
February, this year, marks seven years since I began seeing my naturopath, Dr. Kelly Upcott. For six and a half years, I saw her every month, and if, for some reason, there was five or six weeks between appointments, I would begin to deteriorate rapidly. But all that changed last summer.
Circumstances prevented me from getting in for two months, and we were both pleased to find that there had been no setbacks.… Read More
Jody Smith considers how her life had become one of necessary isolation, and how a chance encounter with new neighbours and the possibility of having them in her home, led to feelings of fear and insecurity. Looking back she reflects on how these concerns have slowly improved and how the occasional visitor is now more welcome…
I live in a cul-de-sac that contains half a dozen houses. And, as I think about it, living on a cul-de-sac – or dead-end street – strikes my twisted sense of humour as being a great, though unintended, picture for living with ME/CFS.
Its after dark, and through my living room window, I see the headlights of any cars driving in or out.… Read More
By Jody Smith
Hope is essential – especially when things look darkest. And yet, when you’re living with ME/CFS, stirring up hope can be the hardest thing to do.
Hope can be a double-edged sword that can loosen your bonds, or savage you when you wield it. Having hope is no guarantee of success. Daring to hope can feel like you are setting yourself up for the possibility of more pain. And let’s face it, you are.
Fanning that wee flame takes the courage of a warrior. It takes a certain recklessness that can be in short supply when you feel surrounded by the darkness that is ME/CFS.… Read More
By Jody Smith
In North America, the end of November traditionally kicks off the holiday season which runs till the beginning of January. “Holiday season” may seem to be at best an ironic term, at worst a bad joke, for describing this most taxing of time periods, especially for people who are chronically ill, and often poor and isolated as so many are who have ME/CFS.
In the United States, Thanksgiving pulls the trigger for the holiday season. It’s an occasion that does its best to bring some light and comfort to a cold, bleak time of year. At least, in theory.… Read More
Jody Smith reflects on how vital she has found the slow return of her writing ability – how it has helped with the expression of feelings and experiences, contributed to reestablishing a sense of self, and has proved such an important and productive means of social interaction…
Soliloquy – A dramatic or literary form of discourse in which a character talks to himself or herself or reveals his or her thoughts without addressing a listener.
In my life before ME/CFS, I did a lot of writing. I kept a journal most of my life, and in the years before becoming ill, I was also writing for newsletters for my church and my homeschooling group.… Read More
Jody Smith relates how tiny victories helped her regain a life despite her limitations.
What is it about situations that are unfamiliar that make our brains feel lumpy and our bodies feel like they are moving (or trying to) in another dimension?
When I was at my sickest with ME/CFS, this wasn’t much of a problem, because I was spending most of my time hugging my bed, trying not to fall off the world. When I got a bit healthier, the unfamiliar began to present a new kind of problem, needing new strategies to be worked out for daily survival.
For instance, when I was once again able to dress myself and venture outside of my house, stepping out of the front door was just the first of a series of overwhelming challenges.… Read More
Jody Smith explains how autumn sends her body into hibernation mode, and it’s time to slow down – or else.
I read recently that the term “autumn” is predominantly used in the U.K. “Fall” is more commonly used in the U.S. I’m Canadian, though, so I guess I can use either one. And I choose “autumn” simply because it causes less confusion. It always means the season.
Added to that, “fall” can also mean what happens to me in the autumn. Everything drops for me as summer wanes.
Even though this has been the case for about two decades, this fall or crash catches me off guard every autumn.
… Read More
Jody Smith explains how growing virtual lettuce created a real sense of satisfaction and provided a subtle return to the land of the living…
I knew I was coming back a bit to the land of the living after several years’ exile when I was able to go online again. Getting onto Facebook and learning my way around was quite a coup.
It was a ridiculously challenging and exhausting ordeal. What should have only taken days, instead took a few weeks. And even once I knew what I was doing, I would find myself frazzled and sweating as I’d write a few status updates and replies to friends.… Read More
By Jody Smith
About 10 years ago I began looking online for information and answers about my mystery illness. At that time, my sleeping and waking hours were upside down. I would sleep most of the day and be up throughout the night till dawn. I spent many disturbing hours online looking for answers.
Back then, most of what I could find was pessimistic at best, terrifying at worst. Implications of heart disease and brain damage, irreversible hormonal disruption, malfunctions of the heretofore unheard of hypothalamic-pituitary-adrenal axis, and plenty more that I could not translate into language I could understand.
Confusion and growing despair
Most of what I found was written in such complex medical jargon that I couldn’t tell what I was reading.… Read More
by Jody Smith
Poor dental health may not be at the top of the list when you think of ME/CFS problems. But many of us who have been sick for any length of time can tell you some horror stories about our teeth. I don’t know if having ME/CFS is directly linked to poor teeth and all that can result, but the inability to get to a dentist or to pay for a visit will assuredly have a direct effect.
Do you have dental coverage? Many with ME/CFS don’t. I certainly don’t. We followed the only path open to us for years, which was to not go to the dentist. … Read More
by Jody Smith
Chronic illness and the Poverty Diet often go together. Far too often. I was on the Poverty Diet for many years. I have ME/CFS, my husband Alan deals with crippling past injuries and fibromyalgia. We raised our children on the Poverty Diet during more than half their childhoods.
It is a no-brainer (pardon the ME/CFS pun) that when you can’t work, you aren’t making any money. It is less obvious, to many who haven’t been through it, that people who can’t work because of poor health are not automatically protected by any kind of federal safety net – social, financial or otherwise.… Read More
by Jody Smith
For most years in the last two decades, summer has been my best season. My serious crashes always took place between September and April. And every year, beginning in May, I would begin my slow climb back toward something resembling health.
Laying outside in the sun for 20 minutes or so in the mornings seemed to make a difference surprisingly quickly. Being able to go for walks, being out in the summer weather, increased my mood and seemed to be one of the factors decreasing my ME/CFS symptoms.
By mid-summer I usually had advanced to being a dull/normal.… Read More
by Jody Smith
As is so often the case, the research on a possible correlation between metabolic syndrome and ME/CFS is scanty. When I came across this threadbare research, though, I was desperate enough to check it out for myself.
I recognized myself when I read about the weight gain and difficulties in dropping the weight, but what really rang a bell was when I read that brain function can be severely affected. A poorly-working brain has been one of the worst symptoms of ME/CFS that I struggle with.
Diabetes runs in my family, and the fact that I had so many signs of metabolic syndrome was no surprise. … Read More
by Jody Smith
I’ll always remember my 25th wedding anniversary as being something special. I wish I could say that this was because my husband and I celebrated in some marvelous fashion, but that wasn’t it. At the age of 49, I thought I was having a stroke.
I got up that morning feeling fine — or no worse than usual at any rate — but when I went to my bedroom to get dressed all that changed. Waves of sensory chaos began to crash over me, and I sat on the bed waiting for it to pass. It didn’t. I’d had a wide variety of sensory chaos and problems with my brain for many years by that time, but this was different.… Read More
by Jody Smith
The struggle with energy (or lack of it) is an integral part of life with ME/CFS. Whatever other symptoms each of us deals with, the ongoing energy black hole and knowing when and how to use what little oomph we might have safely, is a conundrum we all grapple with, often without success.
During the times when we just don’t have anything to spare beyond breathing and the most basic thought processes, the quandary of how to use energy is irrelevant and out of reach. The question sticks its tongue out at us in derision.
For some of us though, there are times when we have a little extra energy.… Read More