What a good article, Lynne. When you first came to us with the idea of doing Qualify of Life statements, I remember someone saying that all of our fists make a big fist---something like that. That's what is happening. Together, we make a strong voice and it's being heard.
Qualify of Life was even mentioned when I first came to this forum. Now, you DO hear the phrase everywhere.
Wonderful!
Jan
It's Early, Quality of Life Plea for 2005
Congratulations, love. Keep up the good work and know that you have all the help you can handle here with you. You are a new friend, but I could not be happier for or more proud of you. To work so hard for a disorder that is so little understood is a special calling. When you struggle, know that you fight on behalf of us all. The Bible talks about friendship dividing pain and multiplying joy. You certainly do that for the rest of us, my friend.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
You know, I sometimes meet someone (even cyber meet them) and I know my heart had missed knowing them all my life. I've met so many of those people here on this board. Holding everyone dear for, each a different reason, and their own place in my heart.
That is all sweet and cuddly, I know, kittens, puppys, flowers and hugs, but thankfully or NOT, it comes with nails too.
I just was the first one to say Hey, let's band together. Why? I got made when I found out that I could have been diagnosed many years before I did. I also didn't think that things with in the community were geared well for us, the people with RLS.
I came into this board and found a supportive and proactive group. It changed my life. I got mad about feeling hopeless that life could be better or that my Quality of Life was worth it to the people that could help me.
Brandy with great joy I can tell you it was not just me, it wa those people tha took the step and time to wrtie statements for me. They were the brave ones, I cried with almost everyone I read. This was and always will be an US thing. I just simply made a promise and now keep trying to keep it up, to what those statements and their owners should get. Only the best in my eyes. Each can be proud that they helped to change our community and they not only helped themselves, but they helped so many others to come behind us.
It might be our job to clear some big rocks from the path. That's ok. Someone came before all of us and cleared bigger ones.
Hugs to all and our moon.
Lynne
That is all sweet and cuddly, I know, kittens, puppys, flowers and hugs, but thankfully or NOT, it comes with nails too.
I just was the first one to say Hey, let's band together. Why? I got made when I found out that I could have been diagnosed many years before I did. I also didn't think that things with in the community were geared well for us, the people with RLS.
I came into this board and found a supportive and proactive group. It changed my life. I got mad about feeling hopeless that life could be better or that my Quality of Life was worth it to the people that could help me.
Brandy with great joy I can tell you it was not just me, it wa those people tha took the step and time to wrtie statements for me. They were the brave ones, I cried with almost everyone I read. This was and always will be an US thing. I just simply made a promise and now keep trying to keep it up, to what those statements and their owners should get. Only the best in my eyes. Each can be proud that they helped to change our community and they not only helped themselves, but they helped so many others to come behind us.
It might be our job to clear some big rocks from the path. That's ok. Someone came before all of us and cleared bigger ones.
Hugs to all and our moon.
Lynne
Quality of Life Statement
Ok Lynne here it is,
Hmmmm, Quality of Life and RLS, those two things mix like oil and water! Ever since I was diagnosed with RLS my QOL, not to mention my family's, has considerably gone down hill. I have read everything I could find on RLS. It is called many different names by many different people. Fidgety Legs, Creepy Crawlies, Jimmy Legs, and Dancing Legs to name a few. I never had a name for what my legs felt like, because it was so hard to describe how they felt. I just kept telling my husband that my legs hurt, that they felt like they needed to be stretched as far as I could stretch them, it was just pain, pure pain! When the top of my thighs hurt, I knead them with my knuckles till my hands are raw. In the morning when I wake up, I walk like an old, old woman. I am only 39, I think to myself, "what am I gonna feel like and walk like in 5 years?" It's really depressing to about. I am very thankful I have a doctor who seems to understand how much pain I am in. I don't care for the cocktail of drugs i have to take everyday, but at least it gets me through the day and I am sleeping at night. Before I got the meds, I was like a zombie during the day, black circles under my eyes, can't concentrate and when you have an infant that depends on you for everything, I thought I was losing my mind. When I was told I had RLS and there is no cure for it, you can only treat (drugs) the symptoms. What aggrivates me is when you tell someone that "I have RLS", and they poo-poo it off like it's not a real disease (problem). I want to shake them and say, "You go 48 hrs in my legs and we'll see if your attitude has changed!" This RLS to me is pure Hell! I am not a crier! I used to think I was pretty tough when it came to pain, I played softball since elementary school until my 30's when I played co-ed softball, i had guys 3 times my size mow me down countless times, I would get up shake it off and keep on playing no matter how much it hurt. I had 2 babies naturally ( the 3rd I was smart and got an epidural lol) I thought I could deal with anything, but RLS has knocked me on my butt! I have paced and cried over this countless days and nights, and to have someone tell you, "oh, it can't be that bad!", you just want to dot them right in the nose! Now I know how my grandmother felt whe she complained about her legs hurting and she couldn't sleep, I know how my mother feels when she complains about her legs, and I wish to God I had been more sympathetic to them when I was younger and while my grandmother was still alive. I now know the torment they were talking about. I wish my QOL was better, but I can thank God I am alive, I can thank him for a wonderful husband who tries to understand and deal with me and my pain and my moods and I can thank him for my 3 beautiful little girls. I believe everyone on this earth has a cross to bear and I guess RLS is mine. I hate having RLS, but I have to remember I am blessed in so many other ways. I know by reading many posts on RLS websites, that suicide crosses many peoples minds, and I can understand why it does, especially when you can't find a doctor who will listen to you and try to help. I know how bad I hurt, but I love my family more than I hurt, so I know that I could never do that. I do hope doctors, researchers, and people who don't have RLS read all of our Quality of Life Statements, and hopefully there will be more understanding and more research to find what causes this and hopefully a cure. RLS is miserable and it may not be life threatning, but it sure ruins how you live your life.
I have never written a QOL statement, I hope this one makes sense.
dee
Hmmmm, Quality of Life and RLS, those two things mix like oil and water! Ever since I was diagnosed with RLS my QOL, not to mention my family's, has considerably gone down hill. I have read everything I could find on RLS. It is called many different names by many different people. Fidgety Legs, Creepy Crawlies, Jimmy Legs, and Dancing Legs to name a few. I never had a name for what my legs felt like, because it was so hard to describe how they felt. I just kept telling my husband that my legs hurt, that they felt like they needed to be stretched as far as I could stretch them, it was just pain, pure pain! When the top of my thighs hurt, I knead them with my knuckles till my hands are raw. In the morning when I wake up, I walk like an old, old woman. I am only 39, I think to myself, "what am I gonna feel like and walk like in 5 years?" It's really depressing to about. I am very thankful I have a doctor who seems to understand how much pain I am in. I don't care for the cocktail of drugs i have to take everyday, but at least it gets me through the day and I am sleeping at night. Before I got the meds, I was like a zombie during the day, black circles under my eyes, can't concentrate and when you have an infant that depends on you for everything, I thought I was losing my mind. When I was told I had RLS and there is no cure for it, you can only treat (drugs) the symptoms. What aggrivates me is when you tell someone that "I have RLS", and they poo-poo it off like it's not a real disease (problem). I want to shake them and say, "You go 48 hrs in my legs and we'll see if your attitude has changed!" This RLS to me is pure Hell! I am not a crier! I used to think I was pretty tough when it came to pain, I played softball since elementary school until my 30's when I played co-ed softball, i had guys 3 times my size mow me down countless times, I would get up shake it off and keep on playing no matter how much it hurt. I had 2 babies naturally ( the 3rd I was smart and got an epidural lol) I thought I could deal with anything, but RLS has knocked me on my butt! I have paced and cried over this countless days and nights, and to have someone tell you, "oh, it can't be that bad!", you just want to dot them right in the nose! Now I know how my grandmother felt whe she complained about her legs hurting and she couldn't sleep, I know how my mother feels when she complains about her legs, and I wish to God I had been more sympathetic to them when I was younger and while my grandmother was still alive. I now know the torment they were talking about. I wish my QOL was better, but I can thank God I am alive, I can thank him for a wonderful husband who tries to understand and deal with me and my pain and my moods and I can thank him for my 3 beautiful little girls. I believe everyone on this earth has a cross to bear and I guess RLS is mine. I hate having RLS, but I have to remember I am blessed in so many other ways. I know by reading many posts on RLS websites, that suicide crosses many peoples minds, and I can understand why it does, especially when you can't find a doctor who will listen to you and try to help. I know how bad I hurt, but I love my family more than I hurt, so I know that I could never do that. I do hope doctors, researchers, and people who don't have RLS read all of our Quality of Life Statements, and hopefully there will be more understanding and more research to find what causes this and hopefully a cure. RLS is miserable and it may not be life threatning, but it sure ruins how you live your life.
I have never written a QOL statement, I hope this one makes sense.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
I guess this is still an active thread since it's not locked so...
The fact that I'm writing this at 1:30 AM is symbolic of the QoL that RLS has on my life. I took my Neurontin and Xanax and still have RLS and hopefully I'll get to sleep tonight. (I have another visit with my Neurologist next week to try a totally new regimen although the last visit she said she's out of ideas...
)
I started getting RLS when I was 26 and since it was 1997 or so, the internet was not very popular. I had RLS a few nights per week and after much trial and error found that a large frozen gel pack on my right lower leg gave some relief. (Wasn't real fun during the winters!)
In 2000, I found research on RLS and went to a Neurologist who gave me Carpa-Lova (sp) but it gave me augmentation. He put me on Mirapex and that was a God-send for about 2 years until the higher dosage gave me a severe upset stomach and by this time the RLS was nightly but not very severe. Then Requip also gave me an upset stomach.
2003-2004 was unpleasant and RLS got worse. Benzo's all made me too tired, even the short acting ones. Ambien worked for a few months but started to make me wake in the early morning and couldn't go back to sleep.
2005-present I've been on Neurontin and Xanax which work ok (although I'll always miss my first "love" Mirapex, snif snif.) But I'm starting to wonder if the slight daytime sleepiness and possible lethargy at work will be worth it soon. I'm desperately looking for a new drug...
Drug side effects would not be such an issue but the social "side effects" of sleep deprivation is tough on work and family. Coming home from work exhausted and at times needing a nap instead of playing with my kids is unacceptable but it's the current reality. Sitting with my 6 year old and sometimes not being able to sit down and give her a reading lesson is frustrating. Also, my job deals with angry people and intense situations and feeling tired and slightly lethargic might affect my decisions when I need to be extremely alert.
Lastly, I will always have hope for I choose that my Spiritual strength overcomes my current situation, but my QoL due to RLS is troublesome since RLS is progressive and more options must be found since I'm only 35! Thanks for reading this long post, I've wanted to do this cathartic post for years.
The fact that I'm writing this at 1:30 AM is symbolic of the QoL that RLS has on my life. I took my Neurontin and Xanax and still have RLS and hopefully I'll get to sleep tonight. (I have another visit with my Neurologist next week to try a totally new regimen although the last visit she said she's out of ideas...
)
I started getting RLS when I was 26 and since it was 1997 or so, the internet was not very popular. I had RLS a few nights per week and after much trial and error found that a large frozen gel pack on my right lower leg gave some relief. (Wasn't real fun during the winters!)
In 2000, I found research on RLS and went to a Neurologist who gave me Carpa-Lova (sp) but it gave me augmentation. He put me on Mirapex and that was a God-send for about 2 years until the higher dosage gave me a severe upset stomach and by this time the RLS was nightly but not very severe. Then Requip also gave me an upset stomach.
2003-2004 was unpleasant and RLS got worse. Benzo's all made me too tired, even the short acting ones. Ambien worked for a few months but started to make me wake in the early morning and couldn't go back to sleep.
2005-present I've been on Neurontin and Xanax which work ok (although I'll always miss my first "love" Mirapex, snif snif.) But I'm starting to wonder if the slight daytime sleepiness and possible lethargy at work will be worth it soon. I'm desperately looking for a new drug...
Drug side effects would not be such an issue but the social "side effects" of sleep deprivation is tough on work and family. Coming home from work exhausted and at times needing a nap instead of playing with my kids is unacceptable but it's the current reality. Sitting with my 6 year old and sometimes not being able to sit down and give her a reading lesson is frustrating. Also, my job deals with angry people and intense situations and feeling tired and slightly lethargic might affect my decisions when I need to be extremely alert.
Lastly, I will always have hope for I choose that my Spiritual strength overcomes my current situation, but my QoL due to RLS is troublesome since RLS is progressive and more options must be found since I'm only 35! Thanks for reading this long post, I've wanted to do this cathartic post for years.
Craig I can't thank you enough, honestly. Your words right to those working for us ears. My greatest pleasure is to see that these get into the right hands and they understand this packet is where they can honestly take us each home and to work inside their heart.
Thank you. Big hugs for this one too.
Lynne
Thank you. Big hugs for this one too.
Lynne
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Re: It's Early, Quality of Life Plea for 2005
Lynne, one of the Foundations biggest individual volunteers - past moderator here, support group leader, trainer, part of videos, and more - started these statements.
Please add yours to this. Or read through what's here. Or print them out for your doctor. They have a huge impact on those who read them.
Please add yours to this. Or read through what's here. Or print them out for your doctor. They have a huge impact on those who read them.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.