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.
Resources:
Chronic Fatigue Syndrome Hits Teens Too
http://www.businessweek.com/lifestyle/content/healthday/652127.html
Chronic fatigue syndrome-like caseness as a predictor of work status in fatigued employees on sick leave: four year follow up study
http://oem.bmj.com/content/63/8/570.abstract
Chronic fatigue syndrome in children aged 11 years old and younger.
http://www.ncbi.nlm.nih.gov/pubmed/18192312
AT NIH Chronic Fatigue Syndrome Conference, XMRV Debate Heats Up
http://blogs.wsj.com/health/2011/04/08/at-nih-chronic-fatigue-syndrome-conference-xmrv-debate-heats-up/
Chronic Fatigue Syndrome: Lives Interrupted
http://www.whchronicle.com/2011/04/chronic-fatigue-syndrome-lives-interrupted/
Laura Hillenbrand releases new book while fighting chornic fatigue syndrome
http://www.washingtonpost.com/wp-dyn/content/article/2010/11/28/AR2010112803533.html
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.