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Life With ME/CFS for 23 Years: Casting Light on Invisible Illness

By HERWriter
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Chronic Fatigue Syndrome related image Courtesy of Jody Smith

Did you know that May 12 is International ME/CFS and FM Awareness Day? Have you heard about it on the TV news? Have you read about it in a newspaper, in a magazine, or an online news site?

If you have, it was probably on a website built, sponsored, managed and nurtured by a sick soul, or perhaps a group of them. We in the ME/CFS community just don't get a lot of press.

I appreciate EmpowHER providing the platform on which to write about our Awareness Day for the past few years. This is one of the few websites not part of the ME/CFS community that gives us air time.

We are like the tiny townsfolk in Horton Hears a Who, by Dr. Seuss, who must cluster together yelling at the top of their lungs in order to be heard. EmpowHER strives to give voice to those who aren't heard, and I am happy to make use of this opportunity.

I Got Sick

I have been dealing with ME/CFS for 23 years this past March. I'd heard of the Yuppie Flu in the '80s and thought nothing of it, I am embarrassed to admit. A few years later, in 1992, my whole perspective changed.

Initially I had no idea what was happening. I just knew that something was seriously wrong with me. I had been living with excruciating ear aches, a sore throat, and swollen glands along with a bad cold that lingered for weeks. Then one day, something changed.

I felt like I was moving through water. I was floating. I was squashed by an increased gravity, pushing against a great sense of pressure.

I felt like I couldn't stand up, but I didn't fall down. I felt like I was going to bump into things though I never actually did. I felt like walls and floors were undulating and moving, but of course they weren't.

I could not finish a thought. I felt like I'd had one drink — or two, or three — too many. I had a hard time understanding what was said to me, and what was going on around me.

I felt like I was vibrating. I told my husband, I feel like my head is a big old empty barn, with the barn doors wide open and the wind blowing through it.

No matter what that meant, it couldn’t be good.

For six weeks I could hardly function. Everything took so much effort and energy. I was exhausted.

Now, for a mother of five kids under the age of nine to say she suddenly has become more tired than she'd ever been in her life — that is really saying something. That is really tired.

Jody and five kids
Jody with her five children at Victorian Days Festival the year she first got sick in 1992.

Most people cannot even imagine that kind of tired.

I made a big mistake. I tried to keep up with my normal life. It took everything I had, and no, I couldn't keep up. My days were a hazy, hallucinogenic blur. And then it stopped. After six weeks, all the frightening symptoms went away. I felt fine.

I had lots of questions, but no answers were forthcoming. Eventually I just closed the door on the mystery and was glad it was over. Until I caught a cold six months later. All the symptoms came flooding back, like a fleet of ghosts whooshing in through a door that had suddenly swung open.

For the next six weeks, life spazzed like a kaleidoscope that was being shaken. Vigorously. I staggered through my days, faked my way with the people around me, pretending I knew what they were talking about and what was going on. Collapsed whenever possible as my energy was squeezed out of me like gel from a tube of toothpaste.

And then I was fine again.

Those six weeks had been scary, creepy, and shrouded overall with a sense of impending doom. But it was over and because I didn't know what else to do, I once again just went back to everyday life.

This pattern repeated itself for the next seven years. Twice a year I would catch a cold and would descend into a world of chaos and terror. The rest of the time, I felt fine.

In the autumn of the seventh year my mystery disease emerged once more, but this time it didn't disappear after six weeks. There was no let up, no reprieve, no chance to catch my breath.

I Went Chronic

I had been sent by my doctor for an assortment of medical tests but they all came back saying I was in perfect health. I still had no idea what was wrong, or what to do about it. All I knew by this time was that spending a lot of time in bed helped. My sleep was completely screwed up, as I was up through the night till dawn, then slept till mid-day.

Sleep didn't make me feel any better but I needed a lot of it. I felt seasick, and like I was vibrating. I would clutch my pillow, willing the shaking to stop. My efforts were in vain.

I would do somewhat better through the summer. I went from being a bed-bound vegetable to a much-improved dull normal. At the end of summer, I would slide down in terms of energy level, cognitive sharpness, and overall well-being.

By the end of November, I would have a major crash. Sometimes it happened dramatically, like the year I ended up in the ER.

Back to bed, forget doing or thinking anything. Couldn't watch TV or listen to music, couldn't handle more than 10 minutes of conversation or being around people. I re-read my Nancy Drew books, my Anne of Green Gables series, my Little Women novels, and my mother's John Grisham books. And that's all I did.

I Found Help

In 2007, 15 years after my first acute bout, and eight years after I went chronic, my mother sent me to a naturopath, Dr. Kelly Upcott. I had no money so my mother kindly paid for my monthly appointments for the next few years. If she hadn't, I would have been completely on my own, floundering in the dark. I would probably still be in my bed staring out the window.

Over the next few years, this naturopathic treatment very slowly but very surely began to drag me back into the light.

The day when I was able to drive myself to the neighboring small town, and go to three stores without ending up on the verge of collapse, with my brain (more or less) intact and functional, then drive myself home and not have to dive face first into my bed for the next three days ... I began to believe that maybe I was going to make it.

Jody and son Jesse
Jody and her son Jesse, who also has ME/CFS, in 2014.

Our Invisible Community

As I look back now, from a place I never thought I'd reach, where I spend most days as a reassuringly solid dull normal, I am still as astonished as I was in the beginning of this nightmare. I am astonished that so few people in the medical community know anything about this type of illness, and so many apparently are indifferent to it.

"You're not that sick. It's not that bad." 

This was the message I got from my GP every time I went to see him. He told me he didn't know of any specialists and gave no indication that he would lift a finger to try to find any for me.

The unique indifference to ME/CFS also permeates the mainstream press, most media except for our own ME/CFS ghetto, our own bloggers, our own Facebook pages, our own forums where the wounded, crippled invalids who are too sick to leave their homes are just about the only people offering solace, encouragement, information to their fellows.

There are a few champions to our cause, a few scientists and researchers, a few journalists and writers. We are so grateful for these who have appeared in recent years. The silence had been deafening.

The devastation that this illness brings to a person's life, to their working world, to their marriages and families, shreds everything in its sights like a shotgun blast.

An unknown number of my peers are unseen and unheard day in and day out. They are too ill to leave their homes, many of them too ill to leave their beds. Or too poor to have beds, or homes for that matter. And many of them have been forgotten by the people who used to know them, leaving no trace, no ripple of their existence.

Bringing an Invisible Illness to Light

May 12, which is our day shared with the fibromyalgia community, is an eloquent case in point. Ours is a grassroots movement. It's had to be, with little to no encouragement or recognition from the U.S. medical community, government or press.

In 1992, the same year I became ill, Tom Hennessey, a patient advocate, chose May 12 to be International ME/CFS and FM Awareness Day. In part, this date was chosen to honor Florence Nightingale who may have had ME/CFS. It was her birthday.

Despite the dearth of exposure, publicity and promotion for our day — so little when you compare with what is done for other serious illnesses — International ME/CFS and FM Awareness Day is being observed by patients and the people who care about us in many different ways big and small across the globe. Each year, we see just a little bit more.

International ME/CFS and FM Awareness Day Around the World

Fibromyalgia is well-represented in 20 American states, which is a good thing. Maybe one day ME/CFS will be represented as well. We can hope. It's good to see that the Peace Bridge will be lit with all three colors — blue for ME/CFS, green for Lyme disease, and purple for fibromyalgia.

I couldn't find any events for ME/CFS planned for the United States, which can't be right. If you know of any events in the United States, please post in the Comments section below.

In Australia, the Do Something for ME project is raising awareness and money for Emerge Australia, an organization that advocates for, and educates the public about ME/CFS.

In Canada, things are hopping. I am proud to be a Canadian as May 12 approaches.

Nanaimo, British Columbia has declared May 12 to be Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.

Langevan Bridge in Calgary, Alberta, as well as Niagara Falls will be alight on May 12. 

City halls in Charlottetown, Prince Edward Island; Mississauga, Ontario; Brampton, Ontario; Ottawa, Ontario; Halifax, Nova Scotia; and Toronto, Ontario will light up, some with just our blue ME/CFS lights, and others with lights of our blue, green for Lyme disease and purple for fibromyalgia. 

The Olympic Stadium in Montreal, Quebec, and the CN Tower in Toronto, Ontario will be lit with all three colors.

Paetzold Lecture Theatre in Vancouver, BC will have  Dr. Daniel Peterson and Staci Stevens to speak about ME/CFS on May 24.

On May 16, the Tour de Force Broadway benefit show at Marpole United Church will feature baritenor Kyle Preston Oliver, sopranos Jacqueline Ko and Robin Eder-Warren, and pianist Chris Feige in honor of International Awareness Week for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. A portion of ticket sales goes to the National ME/FM Action Network in Canada.

In Holland, ME/cvs Vereniging wants books, movies, poems and songs that have helped ill people through difficult times. On May 12, all tweets using ?#12MEi and your first name will be published.

In the UK, an international Walk for ME is being organized for ME Awareness week, from May 11-17. Friends and family of ME sufferers do a sponsored run, swim or walk.

In past years, Walk for ME has had participants from all over the UK. People have participated in Spain, New Zealand and North America as well. More than £28,000 has been raised. 

Afternoon tea will be served in the Summer Parlour at Ingatestone Hall, in the county of Essex in England on May 11. Lord Petre, Lord Lieutenant of Essex, will be speaking.

In Ireland, at Bewleys’ Hotel in Newlands Cross, and at Leinster House coffee will be served up with guest speakers on May 12.

The Irish ME/CFS Association is sponsoring two talks by Dr. Abhijit Chaudhuri from the UK as ME Awareness Month activities in May.

The first talk will be on May 30 at the Connacht Hotelmin Galway City. The second will be on May 31 at the Carlton Hotel Dublin Airport in County Dublin.

A woman named Trisha, with the assistance of Fionnuala Kelly Monahan, is having a Tea/Coffee Morning at her home in Celbridge County Kildare for International awareness Day May 12.There will be a raffle of a donated Pandora jewellery box.

Italy's AISF ONLUS is the Italian Association For Fibro and CFS. It's putting on an event in Verona on May 10.

Germany and Japan will have May 12 Thunderclaps.

In Sweden, everyone is encouraged to wear something blue on May 12.

Things Everyone Can Do

Wear something blue. Put up blue ribbons at your house, or turn on a blue light to light up the night.

Talk about your experience with ME/CFS on Facebook, Twitter and other social media. Announce that MAY 12 is our day. Add a blue ribbon to your Facebook profile pic. 

Write a blog about ME/CFS. Tell someone about what ME/CFS has done to you or someone you love.

For More Reading:

May 12th International Awareness Day. Retrieved May 7, 2015.

May 12th Awareness Events  2015. Retrieved May 7, 2015.

May 12, 2015 - International Awareness Day. Retrieved May 7, 2015.

May 12th Awareness Events 2015. Retrieved May 7, 2015.

National ME/FM Action Network. Retrieved May 7, 2015.

May 12 International ME/CFS, Lyme, and FM Awareness Day. Retrieved May 7, 2015.

Visit Jody's website at http://www.ncubator.ca

Reviewed May 7, 2015
by Michele Blacksberg RN

Add a Comment4 Comments

EmpowHER Guest

Thanks for writing this. Wish I had heard of an event happening in the USA but I havent. My husband dressed our son in blue. I planned to wear blue too, but I am still wearing the same thing I wore yesterday. None of us leave the house much because of my illness. My husband is too busy picking up the slack and working to support us. I had planned to post a family photo on Facebook of us all wearing blue. Maybe next year.

May 12, 2015 - 3:15pm
HERWriter (reply to Anonymous)

It's amazing, isn't it, that there is no event in the U.S. except for any held by people of the ME/CFS community themselves. The silence is indeed deafening.

We have all managed to wear blue, but that's partly because we're all in jeans today.:) My son Jesse who is also sick is wearing blue plaid pyjama pants, a blue Tshirt and a blue striped hoodie. So he is a vision for ME/CFS awareness today.:)

I hope you can get your photo next year. Some years are harder than others. I hope the next one is better for you all.

Thank you for writing.:)


May 12, 2015 - 3:28pm
EmpowHER Guest

I cannot imagine how you took care of 5 children while undergoing such a debilitating disease and not even really understanding what was happening to you. I am sorry that your son also came down with the disease. That has to be heartbreaking as a mother. Thank you for shining a light on not only your plight but that of millions of others.

May 12, 2015 - 2:40pm
HERWriter (reply to Anonymous)

Thank you, I appreciate your kind words. It was pretty hairy -- and terrifying -- and guilt-inducing as I worried about how my kids were suffering too from the situation -- especially in those early days. My husband did all he could to step in and take over caring for me, the kids, the house.

Seeing Jesse sick like this is hard. He has slowly been improving though it has taken a long time to get anywhere. Especially for him, I want to see recognition of this disease, and proper treatment for it.

Thank you for writing. I hope you are well, and if you are not, that you will be.


May 12, 2015 - 3:25pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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