26
Mar
This is a call to all young people. It’s time. It’s time to tell the President, Congress and Health and Human Services Secretary Kathleen Sebelius that we have had enough of being ignored. We have to be louder!
The Chronic Fatigue Syndrome Advisory Committee  will be announcing their public meeting dates very SOON. Please check their site every day from now until they post the meeting dates. 
Please tell President Obama, Congress and Health and Human Services Director Kathleen Sebelius we won’t be ignored anymore. We are tired of our disease being passed over year after year for proper funding for research, education, better treatment options and a cure.
We deserve to live a better quality of life. We are the future and we need to be louder to let them know we are the change we seek. We are the change coming to Washington. We are the future doctors, lawyers, engineers, politicians,mothers and fathers, brothers and sisters of the future. We need to be healed now so we can be healthier to take care of this country later when it’s our turn. 
Please if you have ME/CFS tell your story…tell them your dreams…ask them why they aren’t doing anything…they owe it to you.
For more info…go to this page on our website.
Don’t STOP Tweeting until Washington hears us. Don’t Stop.
Never give up!     Please Re-blog if you are tired of being sick and tired!

This is a call to all young people. It’s time. It’s time to tell the President, Congress and Health and Human Services Secretary Kathleen Sebelius that we have had enough of being ignored. We have to be louder!

The Chronic Fatigue Syndrome Advisory Committee  will be announcing their public meeting dates very SOON. Please check their site every day from now until they post the meeting dates. 

Please tell President Obama, Congress and Health and Human Services Director Kathleen Sebelius we won’t be ignored anymore. We are tired of our disease being passed over year after year for proper funding for research, education, better treatment options and a cure.

We deserve to live a better quality of life. We are the future and we need to be louder to let them know we are the change we seek. We are the change coming to Washington. We are the future doctors, lawyers, engineers, politicians,mothers and fathers, brothers and sisters of the future. We need to be healed now so we can be healthier to take care of this country later when it’s our turn. 

Please if you have ME/CFS tell your story…tell them your dreams…ask them why they aren’t doing anything…they owe it to you.

For more info…go to this page on our website.

Don’t STOP Tweeting until Washington hears us. Don’t Stop.

Never give up!     Please Re-blog if you are tired of being sick and tired!

18
Mar
The Rollercoaster Ride - A poem about living with CFS by Nicole
You look at me now and you may see a grinBut I’m a person who can’t enjoy many things.I suffer from that thing called Chronic Fatigue SyndromeSo most of my days are spent alone at home.I can’t go out like you do and have some funThat’s because I’m twice as tired when I’m done.I don’t recover like you do with one night’s sleepSometimes it’s like I haven’t had even a peep.But you don’t understand and you never willUnless you’ve had this and gone down that hill.You go down so fast and don’t know what’s wrongBut the willpower inside tells you to hang on.You suddenly realise your life has droppedWhile people around you continue with theirs and never seem to stop.They look at you and encourage you alongBecause they don’t see what’s truly wrong.It’s a debilitating illness which is so hard to fightThere’s no one way to get it, nor one way to make it right.We suffer for ages trying all different thingsWhen all the time, our life’s hanging by strings.Depression sets in and sets up home in your mindIt’s the courage inside that one must now find.So many times you feel like giving upRunning away from it in the hope it will stop.But you can’t leave now cause you’re not well enoughFighting this thing seems to be getting more tough.One day you feel good and want to do so many thingsBut the more you do, the more suffering later it brings.It’s like a rollercoaster ride going up and downOne days it’s all smiles, the next week all frowns.We try to stay positive with all our mightBut after such a long time, you feel like you’re losing the fight.No doctor can give a perfect remedy, nor specialists the elusive cureSo we live in hope and wonder how much more we must endure.We see people with colds and flus complainBut a week down the track, they’re all better again.They don’t understand how an illness can last so longAnd judge the stability of our minds as being the part that’s wrong.Our friends who always happened to be thereAll of a sudden have disappeared.We can’t go to parties or get together like beforeSo now they see us as unsociable and ask no more.The invitations stop coming and the phonecalls are lessIt’s now you find out who your true friends are I guess.Even when we have a good dayOur friends and partner have gone away.Our world is one of loss and fearWhile trying to stay strong and head clear.We don’t chose to live our days like thisWho would want to jeopardize career, friends and bliss.So don’t judge us by your first perceptionUnless you know all about, or have suffered from this condition.What helps us along is your compassion and understandingA shoulder to lean on and sometimes a tissue to cry in.So treat us normal, the only difference is our limitationsWe’re still the same people, with just a few complications.I’ll continue to fight and try my bestThen one day I’ll be back to normal like you and the rest.This is to help you understand how having this illness feelsAnd how your understanding can help me heal.

Pay IT Forward For M.E-CFS ☛

The Rollercoaster Ride - A poem about living with CFS by Nicole

You look at me now and you may see a grin
But I’m a person who can’t enjoy many things.
I suffer from that thing called Chronic Fatigue Syndrome
So most of my days are spent alone at home.
I can’t go out like you do and have some fun
That’s because I’m twice as tired when I’m done.
I don’t recover like you do with one night’s sleep
Sometimes it’s like I haven’t had even a peep.

But you don’t understand and you never will
Unless you’ve had this and gone down that hill.
You go down so fast and don’t know what’s wrong
But the willpower inside tells you to hang on.
You suddenly realise your life has dropped
While people around you continue with theirs and never seem to stop.
They look at you and encourage you along
Because they don’t see what’s truly wrong.

It’s a debilitating illness which is so hard to fight
There’s no one way to get it, nor one way to make it right.
We suffer for ages trying all different things
When all the time, our life’s hanging by strings.
Depression sets in and sets up home in your mind
It’s the courage inside that one must now find.

So many times you feel like giving up
Running away from it in the hope it will stop.
But you can’t leave now cause you’re not well enough
Fighting this thing seems to be getting more tough.
One day you feel good and want to do so many things
But the more you do, the more suffering later it brings.
It’s like a rollercoaster ride going up and down
One days it’s all smiles, the next week all frowns.

We try to stay positive with all our might
But after such a long time, you feel like you’re losing the fight.
No doctor can give a perfect remedy, nor specialists the elusive cure
So we live in hope and wonder how much more we must endure.
We see people with colds and flus complain
But a week down the track, they’re all better again.
They don’t understand how an illness can last so long
And judge the stability of our minds as being the part that’s wrong.

Our friends who always happened to be there
All of a sudden have disappeared.
We can’t go to parties or get together like before
So now they see us as unsociable and ask no more.
The invitations stop coming and the phonecalls are less
It’s now you find out who your true friends are I guess.
Even when we have a good day
Our friends and partner have gone away.

Our world is one of loss and fear
While trying to stay strong and head clear.
We don’t chose to live our days like this
Who would want to jeopardize career, friends and bliss.
So don’t judge us by your first perception
Unless you know all about, or have suffered from this condition.

What helps us along is your compassion and understanding
A shoulder to lean on and sometimes a tissue to cry in.
So treat us normal, the only difference is our limitations
We’re still the same people, with just a few complications.
I’ll continue to fight and try my best
Then one day I’ll be back to normal like you and the rest.
This is to help you understand how having this illness feels
And how your understanding can help me heal.

Pay IT Forward For M.E-CFS ☛