Despite Our Losses, People with ME/CFS Want More

Despite Our Losses People with ME/CFS Want More

by Jody Smith

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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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Comments

Thanks for writing this, Jody. It rings so true to me, touching on the lost opportunities, the grief, the sacrifice, and even the sense of guilt and loss from being unable to give all that we wanted to our children.
 
Thanks for writing this, Jody. It rings so true to me, touching on the lost opportunities, the grief, the sacrifice, and even the sense of guilt and loss from being unable to give all that we wanted to our children.
minimus,

I hate that it rings true for you. It's true for so many of us. I know it helps to know and to feel like we are not alone in it all.
 
Yes, yes and yes!

I am the walking sick right now, but I do have hope. This hope springs from the people like you, Jody that have gotten better. I have gotten a little better and I am so grateful for the few cautious steps that I have made!

You that came before me have caused the medical community to take us seriously more of the time! Look at how many more researchers are on the job for us now! I am forever in the debt of the people fighting a decade or two before my illness was too acute to ignore and "push through".

I miss my big life, but my quiet life is much neater. I am a better mother to this one last child, born later in life. I feel bad for her that she looks at pictures and does not remember me vibrant and healthy. I am much more careful now. Energy that is not used learning to live with my new normal, or working for those worse off than me are for on her. She is my joy today. How nice to have a "joy"!

Thanks for writing this!
 
Yes, yes and yes!

I am the walking sick right now, but I do have hope. This hope springs from the people like you, Jody that have gotten better. I have gotten a little better and I am so grateful for the few cautious steps that I have made!

You that came before me have caused the medical community to take is seriously more of the time! Look at how many more researchers are on the job for us now! I am forever in the debt of the people fighting a decade or two before my illness was too acute to ignore and "push through".

I miss my big life, but my quiet life is much neater. I am a better mother to this one last child, born later in life. I feel bad for her that she looks at pictures and does not remember me vibrant and healthy. I am much more careful now. Energy that is not used learning to live with my new normal, or working for those worse off than me are for on her. She is my joy today. How nice to have a "joy"!

Thanks for writing this!
Jesse's mom,

Congratulations on being walking sick. I guess:) Every step up is good, despite the difficulties that come with it. I'm glad to hear that I'm helping make hope possible.

It's been a decade now since I was able to get back online and started looking around, and found Phoenix Rising. Started reading, typing:) and learning. And I know there were many doing what they could for years before I was even on the scene. It's been a long haul and we have a long way to go. But you're right we have made some progress.

I'm glad your quiet life contains the things, and the people, that bring you joy and allows you conserve and budget your energy in the ways that work best for you. Thanks for writing:)
 
I just wanted to say that I totally understand this way of thinking, and it might (at least one day) be politically useful, but I try not to think this way myself - yes, I have missed out on stuff, and yes, of course I would prefer to be healthy, but I try to take a more philosophical approach whereby I try to see different experiences as being of equal value, whether those are the experiences of a healthy person or of an ill person. Anyway, except for the first year or two my ME has been moderate, so I couldnt really tell you how I'd feel if my ME was worse, and I can see children and time spent being ill probably affects the way you see things. To be honest, I see ME as the same as other serious illnesses, in that I feel most sorry for those who get it very early before they have had chance to experience much else.
 
I do not feel cheated etc in any way. Maybe because I suffered three decades of being falsley seen as mentally ill . People with mental illness get treated far far worse by others and by life than we ever will. In the eview of most I lost everything. Career, my child bearing years, family , apart from health. But I have no regrets. Very few get through ;life unscathed by illness, grief, life events so we are no different. I have never been without a roof over my head, without a bed (bliss!) without food and even until now, never without a small car. I see regrets as a waste in themselves.
 
Jody.. Thanks.. So beautifully written and says lots that I would love to say if my brain worked better.. Yes, we live with much less, but for me and my husband try to treasure the smaller things... And I think maybe I am more thankful for my family and the support they give.. I give thanks many times a day for my husband, who has to put up with low income, doing all the driving, long drives to pain doc and back, no vacations, no movies or dinners out, etc... I am very very lucky and try to remember this many times each day.. To all the wonderful people here I send my wishes for improved health and happiness where and when you can find it.. Lisa
 
Jody.. Thanks.. So beautifully written and says lots that I would love to say if my brain worked better.. Yes, we live with much less, but for me and my husband try to treasure the smaller things... And I think maybe I am more thankful for my family and the support they give.. I give thanks many times a day for my husband, who has to put up with low income, doing all the driving, long drives to pain doc and back, no vacations, no movies or dinners out, etc... I am very very lucky and try to remember this many times each day.. To all the wonderful people here I send my wishes for improved health and happiness where and when you can find it.. Lisa
Thanks Lisa. I thought you said it very well -- even without a better working brain.:)
 
There is a passage in the Bible that talks about when knowledges ceases, there is Love. As I learn less quickly, and find keeping track more difficult, I also find that letting go of the worry about not keeping track, and not learning quickly anymore, -- that I can love, and I can give someone some of the love that is greater than I am.

@Jody. I am glad you wrote about giving that love to your children. Being love and knowing how to give love is what family is all about, to me.

I pinch a lot of pennies to be here to give that love to my family, and to others. I don't mind at all. :)
 
There is a passage in the Bible that talks about when knowledges ceases, there is Love. As I learn less quickly, and find keeping track more difficult, I also find that letting go of the worry about not keeping track, and not learning quickly anymore, -- that I can love, and I can give someone some of the love that is greater than I am.

@Jody. I am glad you wrote about giving that love to your children. Being love and knowing how to give love is what family is all about, to me.

I pinch a lot of pennies to be here to give that love to my family, and to others. I don't mind at all. :)
Hope4,

You got it, Lady:) And when so much has been cleared out of our lives, the importance of love stands out even more than before. Thanks for writing:)
 
Jody I loved reading your wonderful and touching post. It was like Karma that I came across this today because I never went to sleep - last night or today during the day. I can't stand the pills that make me get the sleep I need, but make me too tired after 5 hrs of being awake to function.
I went to buy an inexpensive "wig" today - someone gave me a gift certificate for my birthday.
After being in the small shop with "Marlene" the owner - she warmed up to me, and found out that I had recently lost my Mom. So she assumed that is why I seemed so vulnerable.

But it was not - it was seeing how my mood was - not being able to be engaged, being overwhelmed at having to seek out so many wigs on my own with no help at all - she had no idea that this was triggering my cognitive loss, etc.

Somehow we talked about being with a mate - I am divorced, no children, and my fiance died in a car accident 10 years ago. All of us have something others of us don't have, or worse symptoms, etc.

I feel for you - feeling like you couldn't provide financial things for your kids.
I was really lucky to have had everything in my life - wonderful summers at Cape Cod, great education, travel.

But I am so very lonely - never felt that before - as I face life alone now.
Marlene told me that her friend had been married 47 yrs. husband passed, and then she met someone at her place of worship. She told me that at my age - I could just seek someone who I am friends/companions with - with some things in common. It all gave me hope - but how do you find someone when I am ill, although as I am getting a bit older - my friends have gone thru some things - but I watch them on Facebook traveling to Portugal, to Italy, to South Africa with their sons for a Safari - and they are all healthy and have money since unlike me - they are still working, but able to travel a lot, since they are all accomplished as I used to be.

I envy you for having a husband, even with FM, and for having the gift of children, and no matter what, I feel you gave your children the greatest gift of all, love unconditional. I miss that in my Dad who passed when I was only in my '30's.

Thanks for your post - I needed a reminder that I am not alone out here, which Is why I love Phoenix Rising because everyone is so very kind, smart, and open.
Cheers, Starlily88