Ok Kiddos......Gotta throw in this CUT OFF DATE so that I can get it all ready for the National Meeting.
Anyone still interested in writing a Quality of Life Statement can do so, as long as I get a copy by Sept. 30, 2005.
I will need this time to package it nicely.
Thank you to all that have loaned your voives to this cause. Thank you to all that sent in updates from Last years packet.
Thank you all for your support and comfort, occasional kicks in the butt (you know who you are).
I know that last years was a huge success. We certainly began to put the many different faces of RLS together, that gave it's readers a big sense of the RLS picture.
My hugs and heart go out to you all. Thank you from the biggest part of my heart.
Print it here or email it to me at:
rlsbecat@yahoo.com a picture of you would be great, not a have to, just great.
Personal Impact statements 2005 National RLS Foundation Meeting.
It's Early, Quality of Life Plea for 2005
Hmmm, Becat....
I wonder if anyone else is like me, and doesn't really REMEMBER what they wrote last year? Can't think if it's "changed" or not.
Everyone else.....
If you've NOT done this, PLEASE do. Simple and short, or verbose (like mine probably was! ).... doesn't matter. The Q of L is the BEST POSSIBLE WAY to get the REAL story of living with RLS to the people who NEED to be moved and touched and empathetic!!!
Sara
I wonder if anyone else is like me, and doesn't really REMEMBER what they wrote last year? Can't think if it's "changed" or not.
Everyone else.....
If you've NOT done this, PLEASE do. Simple and short, or verbose (like mine probably was!
).... doesn't matter. The Q of L is the BEST POSSIBLE WAY to get the REAL story of living with RLS to the people who NEED to be moved and touched and empathetic!!!
Sara
Thankyou for the timely boot up the bum!
Was going to do that a couple of weeks ago but have since gotten sidetracked with a few personal issues here.
Will get an update too you asap ... i promise!!!!
Luv n hugs
Was going to do that a couple of weeks ago but have since gotten sidetracked with a few personal issues here.
Will get an update too you asap ... i promise!!!!
Luv n hugs
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
LAST CALL! THIS WEEK IS THE LAST CALL FOR QUALITY OF LIFE STATEMENTS.
If you want to write one and don't want to post it publically here.
EMAIL it to me at:
rlsbecat!yahoo.com
Your chance to have your voice heard. Together we are louder, let our stories be heard.
We are the real face of RLS. Each one of us.
If you want to write one and don't want to post it publically here.
EMAIL it to me at:
rlsbecat!yahoo.com
Your chance to have your voice heard. Together we are louder, let our stories be heard.
We are the real face of RLS. Each one of us.
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Butterfoot
- Posts: 43
- Joined: Fri Apr 15, 2005 3:11 am
- Location: Kissimmee, FL
- Contact:
Quality of Life?!?!?! How about lack thereof?
Becat, I just read about your request for QOL stories. Lots of days/nights it seems like it should be called "Lack of quality in my life".
I've had it for years. It's as bad in my arms as my legs, and sometimes worse. I found out there's a name for this just this spring. I ran across it by accident while researching treatment options for Plantar Fasciitis which has also caused me fits for years. Sure is difficult to pace the floor when your foot is screaming! HAHA! The next morning I was on the phone to a Neurologist.
I've read the posts of people having to change medications when the current one quits working. Just a few short months with the medication merry-go-round, and I see what they mean. The late nights, lack of sleep, fatigue, frustration and chronic pain just keep beating me down.
After being on pain meds during the day for quite some time for the plantar fasciitis along with other joint and tendon problems, I began to think the RLS was under control with just the DA's. Although I didn't take the pain meds at night, now that I'm trying to cut back on them, I'm finding the RLS is not only not under control with the DA's, it is beginning to show up earlier in the day. Now it's back to the Neurologist and square one.
So it's another sleepless night, limping around the house, swinging my arms, hoping I'm quiet enough not to wake my husband and almost in tears again....I just want to get some sleep.
Fatique, frustration, chronic pain...suffering in silence alone at night? Where's the quality of life?
I've had it for years. It's as bad in my arms as my legs, and sometimes worse. I found out there's a name for this just this spring. I ran across it by accident while researching treatment options for Plantar Fasciitis which has also caused me fits for years. Sure is difficult to pace the floor when your foot is screaming! HAHA!
The next morning I was on the phone to a Neurologist.
I've read the posts of people having to change medications when the current one quits working. Just a few short months with the medication merry-go-round, and I see what they mean. The late nights, lack of sleep, fatigue, frustration and chronic pain just keep beating me down.
After being on pain meds during the day for quite some time for the plantar fasciitis along with other joint and tendon problems, I began to think the RLS was under control with just the DA's. Although I didn't take the pain meds at night, now that I'm trying to cut back on them, I'm finding the RLS is not only not under control with the DA's, it is beginning to show up earlier in the day. Now it's back to the Neurologist and square one.
So it's another sleepless night, limping around the house, swinging my arms, hoping I'm quiet enough not to wake my husband and almost in tears again....I just want to get some sleep.
Fatique, frustration, chronic pain...suffering in silence alone at night? Where's the quality of life?
May only good come your way.
Becat-
Iam new but would like to help? I would like to add some insight to what it is like to be afraid to talk to the Dr. not knowing how too, the fear of being dismissed or not listened too? the fear of the meds that don't always sound too effective or side effects that sound worse than the RLS!
Losing your job because you are over taxed due to lack of sleep and lose your thread finally because it all caught up with you. After 40 some years
of trying to managing it on my own , I came here with a name for it finally and am saying UNCLE!
Iam new but would like to help? I would like to add some insight to what it is like to be afraid to talk to the Dr. not knowing how too, the fear of being dismissed or not listened too? the fear of the meds that don't always sound too effective or side effects that sound worse than the RLS!
Losing your job because you are over taxed due to lack of sleep and lose your thread finally because it all caught up with you. After 40 some years
of trying to managing it on my own , I came here with a name for it finally and am saying UNCLE!
What a long strange trip it has been
CC
CC
Hi to you both
Hello to you both,
I'd love to have a statement from you Butterfoot and CC.
It's your statements and you write what you feel RLS does to your quality of life.
Your words. That is all.
Just email them to me if you don't want to post them.
I'd love to have a statement from you Butterfoot and CC.
It's your statements and you write what you feel RLS does to your quality of life.
Your words. That is all.
Just email them to me if you don't want to post them.
Got it
Thank you CC and Hazel for your statements today.
Your helping us help ourselves. It's simple, together we're louder and stronger.
It's not easy to write one and to really think about your Quality of Life living with RLS. It's a very helpful thing to do. Even if you never let anyone else read it.....
It's a good way for you to see where you've come from and how far you go can go.
Thank you to everyone that wrote one, is writing one, or will think about it.
There is still time to send one to me if you wish to.
Your helping us help ourselves. It's simple, together we're louder and stronger.
It's not easy to write one and to really think about your Quality of Life living with RLS. It's a very helpful thing to do. Even if you never let anyone else read it.....
It's a good way for you to see where you've come from and how far you go can go.
Thank you to everyone that wrote one, is writing one, or will think about it.
There is still time to send one to me if you wish to.
Anyone?
Anyone interested in writing a statement? Anyone?
I've got a solid CD going with 29, but would love to push that number higher.
PLEASE THINK ABOUT WRITING ONE FOR ME, US!
I'll give you time, ok, I'll give you til next week.
Come ya'll add your voice to ours. We've proved last year that we're being listened to. This is your chance to let this community know the WHO they are working for.
Hugs to you all.
I've got a solid CD going with 29, but would love to push that number higher.
PLEASE THINK ABOUT WRITING ONE FOR ME, US!
I'll give you time, ok, I'll give you til next week.
Come ya'll add your voice to ours. We've proved last year that we're being listened to. This is your chance to let this community know the WHO they are working for.
Hugs to you all.
Q OF L STATEMENTS
For anyone who hasn't written a Quality of Life Statement, I just want you to know that it can be very cleansing. For me, it was a little like going to therapy: It dredged up a lot of things--brought them into focus. But, in the end, it made me want to fight for a better quality of life for myself and everyone else.
Please write one--for yourself and for the whole community of RLS "victims". It can be short and to the point--in any style you wish. Please help put a "face" on RLS.
Thanks!
Jan
Please write one--for yourself and for the whole community of RLS "victims". It can be short and to the point--in any style you wish. Please help put a "face" on RLS.
Thanks!
Jan
No one is alone who had friends.
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WhatSleep?
- Posts: 7
- Joined: Sun Jun 12, 2005 4:52 am
- Location: Wisconsin
Quality of Life
For years I was vaguely aware that something might be wrong with my legs. But it wasn't until I read posts here that I understood that those feelings in my legs were not normal, and that this villian actually had a name: RLS.
This is a thief with many faces. The horrible creepy-crawly feeling in my legs at night. Feeling I have to get up and move or I'll scream. Trying to sit and work while my legs jiggle up and down in a futile effort to stave off an attack. Being sound asleep (HAHA) and feeling my legs stiffen and go into horrible cramps (Riverdance, anyone?). Waking up in the morning feeling like I had engaged in martial-arts combat and limping around all day with real pain. Extreme itching in my legs and feet that caused me to scratch until it bleeds -- and scars.
For me, RLS is just one of many crosses to bear. Apnea. Narcolepsy. Severe vertigo and hearing loss (still figuring that one out). They all take something away from life. They are real -- and they all hurt. But they're only part of the story.
RLS and other disorders also can lead to groups of special people (like this one!) Each person with God-given dignity and tremendous worth. Each, who by sharing their pain, struggles and triumphs, enriches the rest. We may be weakened by disease, but are stronger together. Stronger. Everyone here contributes to it. That's no loss; it's a gain. Maybe in the end that's the real story. Best of all, it's something RLS can never take away.
This is a thief with many faces. The horrible creepy-crawly feeling in my legs at night. Feeling I have to get up and move or I'll scream. Trying to sit and work while my legs jiggle up and down in a futile effort to stave off an attack. Being sound asleep (HAHA) and feeling my legs stiffen and go into horrible cramps (Riverdance, anyone?). Waking up in the morning feeling like I had engaged in martial-arts combat and limping around all day with real pain. Extreme itching in my legs and feet that caused me to scratch until it bleeds -- and scars.
For me, RLS is just one of many crosses to bear. Apnea. Narcolepsy. Severe vertigo and hearing loss (still figuring that one out). They all take something away from life. They are real -- and they all hurt. But they're only part of the story.
RLS and other disorders also can lead to groups of special people (like this one!) Each person with God-given dignity and tremendous worth. Each, who by sharing their pain, struggles and triumphs, enriches the rest. We may be weakened by disease, but are stronger together. Stronger. Everyone here contributes to it. That's no loss; it's a gain. Maybe in the end that's the real story. Best of all, it's something RLS can never take away.