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Despite Our Losses, People with ME/CFS Want More

Despite Our Losses People with ME/CFS Want More

by Jody Smith

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 that came with it, from my life, from my husband Alan's life or from the lives of our children.

We didn't go on vacations. We didn't have comfortable bank accounts. We didn't make investments. All renovations are done by my husband who has fibromyalgia and who has borne the weight of damage from work accidents stretching two and three decades back.

Just recently we were able to have car repairs done at a mechanic's shop. Nice! But the effects of having to crawl under a car and do every repair of every kind over all those years still inhabit Alan's bones and muscles.

We couldn't give our kids nearly the life they should have had growing up. They don't know what they missed, and that's the shame of it. Or just one of the shames.

They know we love them. But they aren't aware of the kind of place they should have in the world. They don't know that the gifts should have been bigger and better and not dictated by skinny ME/CFS purse strings. They should have received so much more. They knew it couldn't happen and accepted that — but they shouldn't have had to.

Their birthrights were stolen. Their currency diminished along with ours. They learned how to work hard and do a good job and be proud of their labors. But they shouldn't have had to labor so hard. In a world where many complain and are suspicious of people who expect things to be handed to them ... I wish I could have just handed my kids so much more than I was able to do.

And while my life has gotten easier and simpler as I've gotten healthier and have been able to work online, it's impossible to undo what was done ... or what had to be left undone. For years.

You know what I'm talking about.

In the midst of my railing and torrent of complaints, I am fully aware that I am one of the lucky ones. I am ambulatory. Cognitively I've become much sharper than I used to be. I have a quiet life, with few complications or panicking pressures most of the time.

But — here comes more railing — what if I didn't WANT a quiet life? What if what I want is a busy life, full of people, full of activities that matter to me? What if I want to work part time at the local library, and help at the local food bank? And take an art class uptown? Or go to a weekend-long music festival? Maybe take a dance class.

Maybe I'd like to fly to British Columbia to visit one of our daughters and her family. (And I do.) And maybe I'd like to fly to Manitoba to visit another. (Yes, I do.) But I can't. I can't afford it financially and I don't know if I can afford it cognitively.

There's an old Bible verse that says it's cool to want a clean ox stall ... just be aware there'd be no ox in it. Yeah, definitely paraphrasing here. If you want a quiet life, that means perforce that there won't be much in it.

And I've lived that way for some time now. Aspired to it, wished for it, in fact when my life was too hard and too heavy and too noisy and too terrifying for words.

There are worse things than being bored after all. Being terrified is one example that comes to mind. But I know you will understand when I say that what I want is a BIG life. A full life. A life that requires page upon page in a schedule book because there is so much being stuffed into it.

Like my life used to be. Before ME/CFS came in like a steam roller and smashed all the highs right out of it. Eventually I was just so relieved to escape the lows that I was happy to settle for this flattened pancake of a life. So grateful for the absence of fear and danger.

But just so we're clear. Settling for a small quiet life wasn't my first choice. And in fact, I had no other choice.

Mind you, it is far better than the horror I used to live in. But, speaking for myself and all the rest of us in this ME/CFS log jam, I am declaring that though our resources be small and our energy smaller, though we struggle just to get through a day in one piece ... we want something more.

Our goal is to have more in our lives of the things that we were once passionate about, that we would like to become enamored with, finding our lives complicated with good things like loved ones and hobbies and missions and exploits.

This is also, and maybe especially, true for those of you whose greatest focus these days has to be getting through a day ... dealing with intolerable pain ... unable to lift your head long enough to nod your agreement ... unable to read these words on your own or to be able to endure someone else reading them to you ... you are all so much on my mind and on my heart.

And you are heroes as you give everything you've got against such odds, again and again, just to survive one more day.

The cry in each of our hearts for more will be unique. Yours will be different from mine. Man! That is such a good thing. Imagine what a beautiful mosaic we would make if we could actually take wing in the ways we yearn to.

We have had so little help to get even just our needs met, let alone our deepest desires and passions. We need to hang on to them anyway, whether we see any chance that they can ever come to pass or not.

Even when hanging on to them is more painful than letting them go. Even when we know the time for some of them is long past. They are part of who we were. And that makes them part of who we are.

Our message to the rest of the world? Never make the mistake of thinking that what you see is all we are.

Because from those of us who are so sick all we can manage is to lie with eyes closed breathing in and out, all the way across the spectrum to the walking (or crawling) wounded and the working ill, we've been fighting an invisible and unsung battle for a fullness of life. And no matter how quiet and still we may seem, the fight for more has not ceased.

Photo: Pixabay
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I don't have a lot of energy to write the kind of reply id like to but thank you; this really moved me and was beautifully sad. And of course I have to ask the standard desperate question.. How did you get better? you obviously have had big improvements which is awesome and gives me some hope.