I don't think many people with Chronic Fatigue Syndrome see themselves as heroes. Or, maybe they do but they don't expect anyone else to see them in that light.
The limitations we face are so enormous that it can take everything we've got to accomplish very little at times. It goes against our grain, but we have to lower the bar for even small every day activities.
But the people with CFS who accomplish things, and those whose accomplishment is to just manage to keep breathing ... those who overcome their bonds, and those who must learn to rest within them are all heroes. Trying to move a rock that is too big, with energy that is too small and very often with next to no help from ... well, from anyone.
I have referred to our community in the past as a CFS Ghetto. But we are also a clan. Here's to the heroes of Clan CFS. My hat is off to every one of you.
1) To the heroes who manage to get up and go to work, then collapse when they get back home.
They use up all their precious teaspoons of energy to earn a living. Because they can work, people don't see them as ill. There's nothing left of them by the time the workday is over but there's no other way to pay the bills. And these are the lucky ones, who live a half-life.
2) To the heroes who stay home and raise their kids, from their beds and couches.
If they are lucky they have pensions or they have healthy spouses who shoulder the financial load. But their energy tank is always on E for empty as they give their tiny all to care for their families.
3) To the heroes who write about CFS in blogs, articles and websites.
This takes a lot of energy. And it requires the mental clarity that is so precious and rare in CFS. To protect this mental clarity, the rest of their time is spent regenerating, working up just a little more of that ability to get the word out that we exist.
4) To the heroes who must live cocooned away from the world.
Many people with CFS can't work, can't write, maybe can't read ... can't function as normal people think of functioning. Their accomplishments might be making breakfast and maybe getting dressed. If they're lucky they can sit or recline near a window, their only connection to the rest of the world.
5) To the heroes who petition for pensions.
People who are this sick should be on a disability pension. Many of us aren't. We can't prove we're sick or we are too sick to make the petitions and appeals. That minority who can speak up and make headway in this arena are performing a service for all of us.
6) To the heroes who don't.
Getting by on next to no money when you are too sick to work or are without a pension is a horrifying experience. It is however an experience that is the daily reality for far too many of us. Much harder than being able to work. Many end up homeless.
7) To the heroes who can't get out of bed. Can't hold their heads up. Can't speak.
This is a special and unique kind of hell. This creates a kind of isolation that's like being the living dead.
8) To the heroes who have been sick now for decades, heading into old age.
Many of us can look back on ten, twenty, thirty years of illness. The hope for a better future dies hard when you're sixty and haven't been well since early adulthood.
9) To the heroes who got sick so young they've never had a job, never had a driver's license, never fallen in love.
These hurt my heart the most, I think. The old can treasure memories, as they reflect back on healthier times. The young ones haven't had the chance to form these memories. The future is uncertain at best.
10) To the doctors, scientists and researchers and journalists who are determined to help us.
Chronic Fatigue Syndrome is not a popular disease. We don't have huge sums of money or support for research. We don't make the evening news, we don't have celebrity spokespersons or fund-raisers. The people who want to find answers for us are few, but they are precious to us. They are our lifeline. Many thanks.
Chronic Fatigue Syndrome Hits Teens Too
Chronic fatigue syndrome-like caseness as a predictor of work status in fatigued employees on sick leave: four year follow up study
Chronic fatigue syndrome in children aged 11 years old and younger.
AT NIH Chronic Fatigue Syndrome Conference, XMRV Debate Heats Up
Chronic Fatigue Syndrome: Lives Interrupted
Laura Hillenbrand releases new book while fighting chornic fatigue syndrome
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment14 Comments
Jacquie, you really got hit young. My son was 16 when we realized something was seriously wrong but he was sick for probably a year before that. Great -- I have CFS and don't recognize it in my own son, struggling on his own for a year. Oh well. When he got desperately sick I saw it.
He's turning 21 this month. No drivers licence. No dating. No buddies to hang with, except on the net. Thank God for the net! He had a job interview for packing groceries this weekend and will hear in a few days whether he'll get the job or not. Torn between being pleased for him because he might be able to do this, and worried it might throw him into a crash. He has been fortunate, recovering a good bit in the last 4 years or so.
Tough for all you kids. (You are young enough to be my daughter so I get to call you a kid.:) And no, there aren't many who understand.
Sometimes I think I have written everything I can write and am just repeating myself. But comments like yours here tell me I should keep on writing about CFS. Told a friend blogger once, we'll just paper the internet, until what we write overwhelms all the inaccurate misinformation out there about CFS.
I hope that improvement and strength and pleasure are ahead of you Jacquie.
JodyMay 2, 2011 - 7:36am
Oops, I forgot to sign in when I replied to your comment, definitely a day of brain fog! Sorry about that!May 2, 2011 - 9:21pm
Nothing to apologize for, Jacquie. :)
You may yet be able to put things into words, the brain fog may one day be gone or at least lessened. I used to write, for a website, a homeschool organization and my church newsletter. A decade ago I had to leave all that and everything else I'd been doing because of CFS.
The next 6 yrs or so I could hardly write my own name. Went through a time I couldn't read because I couldn't understand it, a time I couldn't read because it would bring on such severe symptoms I had to go to bed the rest of the day.
Writing anything would also put me into bed. After some recovery I could write but ... had nothing to say and nobody to say it to. That was still the case up till 2 yrs ago when my husband was able to buy me a laptop and I found my way onto the net. But a year before that I couldn't have done more than scrabble out an occasional short email.
Don't let go of hope. Hope in spite of everything.
JodyMay 3, 2011 - 7:34am
Jody, one of my favourite sayings is "Never lose hope, it's what allows you to fly".May 4, 2011 - 3:05am
Keep on soaring, Jacquie.:)May 4, 2011 - 7:03am
Hope you're son gets that job Jody, and that he doesn't have that crash! Being out and working would definitely expand his world a LOT!
I don't mind being called a kid. Turning 30 isn't a prospect that thrills me, so I'll take kid any day! I am in the process of planning a party for my birthday, hey I'm alive, and that's something to celebrate!
I've been lucky with SOME friends. Most don't get it, but my best friends knew me before I got sick, and take the good with the bad. It's been hard sometimes, watching them get to live their lives while I'm stuck on my butt unable to live properly. But there are occassional bright spots, which I treasure with all my heart.
I keep posting the links to these pieces to my facebook page, so that eventually some of this info will eventually sink in to my friends and family. You're able to put into words what I struggle to. Often times, when asked to explain myself (which I find SOOOOOO frustrating), I am reduced to tears, because people just don't get it.
Maybe papering the internet is the ONLY way we can get our message across. I hope one day, maybe I'll be able to think straight enough to contribute to something like this. But in the mean time, you've got a voice for a lot of people, and I'm sure they all appreciate this as much as I do!May 2, 2011 - 9:17pm
Thanks for yet another great piece Jody. Number 9 definitely struck a chord for me. I was ten years old when I was diagnosed with this cruel illness. I turn 30 in September this year. Over the years I have managed to learn to drive (took forever!), but I have missed out on most of the "normal" youth experiences, good and bad. I have learned to accept that I have my limitations and that after so many years, this disease will probably never fully leave me, I'll just have good years and bad years.
It's nice to know there are others out there who understand, as there are all too many who don't. Those who think just because they see me looking ok (hair done, and make-up on, to make sure I don't look as bad as I feel!), that I must be ok. Or because I blow all my energy helping them do something that should be easy, that I must be able to do more than I am able to.
Please keep writing these pieces, as it helps more than you can possibly know to be able to have it put into words to share with the people near and dear to me.
JacquieMay 2, 2011 - 5:54am
My heart goes out to you. My son got sick at 16, though in retrospect we realized he'd been going downhill for a year before that. He turns 21 next month. No drivers licence, no parties, no school, no friends dropping by. His life in on the internet and with his parents and brother and sisters.
The hope is that he will completely recover. He is much better than he was 4 yrs ago -- mind you the baseline then was very low. He couldn't be out of bed, could hardly hold his head up, I practically fed him, and he couldn't follow conversations. Slept most of the time, but all the "wrong" hours, up at night, slept during the day. But he is able now to be up some of the "right" hours. He has applied for a parttime-parttime-parttime job at a local grocery store. We all know he may not be able to do it but he might because he's been regaining ground that well. Just very slowly.
I have some articles about my son on my website www.ncubator.ca if you are interested in checking them out, he was 18 like you when I started writing them. They end abruptly a year or so ago but that's because I started working as a freelancer then and haven't been able to keep up with my own writing. Not complaining, I love being able to work.:)
Hang on to hope, even when it seems like there's no reason for it. Especially then. Require life to come to you. Meantime ... get some rest. :)
JodyApril 28, 2011 - 6:42am
oh this makes me cry. i hate to think of other people going through what i am going through, and worse. I'll find us a cure, don't worry. We just have to be patienter.April 27, 2011 - 9:45pm
It is terrible isn't it to think of what others are suffering through. And so many have no help.
We'll just have to recover so we can help them, eh?
JodyApril 28, 2011 - 6:44am