Hi Whatsleep,
I asking cause I have to ..........did you post that as a Quality of life statement for me?
Sorry but the brain is not as good as it should be on my shoulders. LOL
Your words ring like the truth set to music.
Our strength is here, settled in the post and answers we give to one another. Thank you for your words, even if they are not to be used in the package.
Hugs.
It's Early, Quality of Life Plea for 2005
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WhatSleep?
- Posts: 7
- Joined: Sun Jun 12, 2005 4:52 am
- Location: Wisconsin
Quality of Life Statement
Hello Becat!
Yes, that was my intention. I read your call for stories and thought I'd chip in what I could. Bless you.
Yes, that was my intention. I read your call for stories and thought I'd chip in what I could. Bless you.
Thank you
Thank you Whatsleep!
I thought so, but wanted to ask to be safe. I won't use it without your consent.
Yahoo! Ya'll we're up to 33 thus far.
Awesome........still will take more if you got one in ya to write.
Thank you to all who have written one. I do believe that they have the chance to help us, but more so for ourselves. It is a great thing to clear the heart and mind and find the fight, focus, and the benefit of these.
My husband told me today that it helped him understand more than he would have without having read my thoughts.
Amazing because we talk about it often, but my focus showed him taught him, gave him the insight beyond our converstations.
Hugs to you all, gotta run for now.
I thought so, but wanted to ask to be safe. I won't use it without your consent.
Yahoo! Ya'll we're up to 33 thus far.
Awesome........still will take more if you got one in ya to write.
Thank you to all who have written one. I do believe that they have the chance to help us, but more so for ourselves. It is a great thing to clear the heart and mind and find the fight, focus, and the benefit of these.
My husband told me today that it helped him understand more than he would have without having read my thoughts.
Amazing because we talk about it often, but my focus showed him taught him, gave him the insight beyond our converstations.
Hugs to you all, gotta run for now.
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ViewsAskew
- Moderator
- Posts: 16607
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Becat, I was talking to Dr B a few weeks ago and he said something similar about support group meetings. He said that when spouses come and listen to other people talk about their RLS, that they come away with a whole new understanding.
Giving some of these QoL statements to our family, our spouses, or other important people in our life might be very important. This could help others see that it is not just us. You know how you feel when you first find this group? That you are not alone? Well, those close to us haven't had the chance to get that feeling. Sharing these stories might provide them with that 'Aha' that they need to have more compassion.
Ann
Giving some of these QoL statements to our family, our spouses, or other important people in our life might be very important. This could help others see that it is not just us. You know how you feel when you first find this group? That you are not alone? Well, those close to us haven't had the chance to get that feeling. Sharing these stories might provide them with that 'Aha' that they need to have more compassion.
Ann
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.
Yup
I thought it was an interesting thought as well. I have done this for over a year, i've never not been touched by these statements. I had no idea hubby was as touched as he was. It does give them a whole new purpose, one that touches more than our own community.
Hugs to all and Thanks over and over for your voices and statements.
Anyone else out there?
Hugs to all and Thanks over and over for your voices and statements.
Anyone else out there?
Ok
Ok, as it stands today, we have 34 statements for a combined package this year.
Combined, because we were lucky to get several updated statements for this year. Thank you Ann, Jan, Sara, Marlene, Brady, Sandygirl, and myself.
For those of you that might remember Sandygirl from last year, she is doing really well. She was waiting for a kidney last year and through many different illnesses, RLS was what she found to be the hardest to deal with. She got her new kidney, fought infections and post op problems, AND WON! New kidney working great and NO MORE RLS! Her's was secondary due to end stages of renial failure. Awesome story and we're so happy she's got her dreams back.
Thank you all for joining our collective voice. Doctors may treat us, researchers work on our behalf, But we are the ones living with RLS. There is no one better to listen to than us. Your bravery in sharing so openly is without a doubt, an honor for me to be apart of this group.
My biggest hugs to you all.
I couldn't mean it more when I say that I'm proud to know you all.
Combined, because we were lucky to get several updated statements for this year. Thank you Ann, Jan, Sara, Marlene, Brady, Sandygirl, and myself.
For those of you that might remember Sandygirl from last year, she is doing really well. She was waiting for a kidney last year and through many different illnesses, RLS was what she found to be the hardest to deal with. She got her new kidney, fought infections and post op problems, AND WON! New kidney working great and NO MORE RLS! Her's was secondary due to end stages of renial failure. Awesome story and we're so happy she's got her dreams back.
Thank you all for joining our collective voice. Doctors may treat us, researchers work on our behalf, But we are the ones living with RLS. There is no one better to listen to than us. Your bravery in sharing so openly is without a doubt, an honor for me to be apart of this group.
My biggest hugs to you all.
I couldn't mean it more when I say that I'm proud to know you all.
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
So happy for Sandygirl's wonderful recovery! Blessings and Joy! Wish I were going to the conference. If wishes were horses I'd ride ride ride... there's a song somewhere in there! There IS that strength in sharing, caring and learning that I sorely want to obtain!
Myself I don't often realize the price I have paid living with RLS. Had a wonderful if not perfect month of treatment. For the first time in three years I drove alone to visit my daughter and granddaughter for the day. It is amazing what proper treatment can do for a person. Long story short, my doctor is no longer able to treat me. And while I felt quite a loss, it wasn't till my daughter expressed her concerns. She said she didn't understand, and was sorry. It had been the first time in years that she felt that her oldself mother was with her. That she was so relieved to see me not worn out after driving 2 1/2 hours (which before would have been closer to 4 hours due to stops), and still could go do things with her and my granddaughter and not be in pain.
Some what my sense last night when I woke at 12:30am with my old companion RLS. It is one of those things that you don't miss till it is back! hahahaha
Yes I am proud and manic that the wonderful voices of these wonderful people will be expressed.
Love and Healing thoughts, Hazel
Even if I have dry spells, I will still continue to row.
Myself I don't often realize the price I have paid living with RLS. Had a wonderful if not perfect month of treatment. For the first time in three years I drove alone to visit my daughter and granddaughter for the day. It is amazing what proper treatment can do for a person. Long story short, my doctor is no longer able to treat me. And while I felt quite a loss, it wasn't till my daughter expressed her concerns. She said she didn't understand, and was sorry. It had been the first time in years that she felt that her oldself mother was with her. That she was so relieved to see me not worn out after driving 2 1/2 hours (which before would have been closer to 4 hours due to stops), and still could go do things with her and my granddaughter and not be in pain.
Some what my sense last night when I woke at 12:30am with my old companion RLS. It is one of those things that you don't miss till it is back! hahahaha
Yes I am proud and manic that the wonderful voices of these wonderful people will be expressed.
Love and Healing thoughts, Hazel
Even if I have dry spells, I will still continue to row.
What wonderful news to hear about Sandygirl. I remember her well. How we were amazed at the fact that RLS was the thing that bothered her the most out of all of her problems. We knew RLS is horrible, but Sandygirl really brought that point home! And, now she is free!
Freedom from RLS--that's what we all want. Hazel, I had a visit from the monster last night, too. And, it was about 12:30 am when RLS reared its ugly head. I had taken my usual cocktail--Clonzepam and Mirapex; Ambien; and Gabritral (a new drug prescribed by my neuro)--but to no avail. I was absolutely miserable last night. But, what wonderful news to hear that someone we know is FREE!
I can't wait to get to the national meeting; to hear speakers--meet with other victims--some I know and others I won't know. I'll listen, on the edge of my seat, soaking up every word, taking notes. Hoping against hope that something I hear will help someone, maybe me! And, Hazel and Penguin, and all of you--they are going to see my face and know that I'm just one of many worthy people who deserve to have a life--who deserve to do ordinary things that people take for granted every day--because we are sleep deprived, in pain and never know when RLS is going to visit us. We'll be taking all of you with us, in spirit and with love.
Jan
Freedom from RLS--that's what we all want. Hazel, I had a visit from the monster last night, too. And, it was about 12:30 am when RLS reared its ugly head. I had taken my usual cocktail--Clonzepam and Mirapex; Ambien; and Gabritral (a new drug prescribed by my neuro)--but to no avail. I was absolutely miserable last night. But, what wonderful news to hear that someone we know is FREE!
I can't wait to get to the national meeting; to hear speakers--meet with other victims--some I know and others I won't know. I'll listen, on the edge of my seat, soaking up every word, taking notes. Hoping against hope that something I hear will help someone, maybe me! And, Hazel and Penguin, and all of you--they are going to see my face and know that I'm just one of many worthy people who deserve to have a life--who deserve to do ordinary things that people take for granted every day--because we are sleep deprived, in pain and never know when RLS is going to visit us. We'll be taking all of you with us, in spirit and with love.
Jan
No one is alone who had friends.
Light Bulb
Jan and Hazel, you've given me a light bulb moment. Your post were perfect for me tonight.
I guess I can say it out loud, that I am going to be be given the chance to speak at the National Meeting to the Support Group Leaders about our project "Quality of Life". I'm going to try to explain to them what it is and how it can help.
Hazel, I'm so sorry to hear about your doctor, I send my best, most trusted, warmest thoughts and prayers that you find a decent replacement.
The other thing that hit was, you and your daughter. The "oldself you".....yup, we never fully understand how we are robbed of a simple life, simple pleasures until it's been gone or deadened a bit, and then the RLS comes back. It's a grace filled moment to think " wow, I lived that way for so long! How do we do it?" It's just never a bad thing to know when your in a great moment and you get the chance to enjoy right then. That is the good that comes from living through rough stuff. You learn to enjoy when it happens to go well. Also, yeah , your a new Hazel.....the one you were and the one you thought you'd be growing older......well that picture is somewhat changed. Your Hazel with RLS, she's a great woman. She's worthy of a great treatment. Hazel with sleep, a bit more pain free, and choices about her Quality of Life. Changed, but wiser and worthy, and wonderful. That is in all of us. We just need a little control over what tries to control us.
Jan, you said it.......Victims of RLS. I have to tell you, that is what I think Q of L statements and this web site help us with. We're not victims if we get some control. It's bout turning that thought around and fighting for what works. That is different for all of us, but the thought that change is possible is here, among us.
There is so much I could say about the statements, but the point I hope to get across is that it's about grieving the bad, the diagnosis and the knowledge that it might be with us for life. The trials and errors we go through to find a treatment. But grieve it and then take charge. Control what you can, live well, and enjoy those warm moments as they happen.
And Miss Penguin, The moon is full and bright......yes, those smiles are there.shining down even if there are some clouds to hide behind. It's there.
Hugs to you all. yeah!
Taking Chances
Ok, well I finally really practiced what I have been preaching last night.
I copied and sent out to my closest, LOL, local friends and a few family members, a copy of my Q of L.
To be honest, that was scary! Why? everyone say it together.....no one really understands unless they live this way.
I have been rereading a couple of post in this thread and I just got it finally. I've said it all along, that I hide most of what happens with RLS.
I really hide it from those local friends because I feel like it becomes too much to support or handle, what with regular life coming into play.
My thought last night was this.......I think everyone around me knows. I think they understand. Heck, I have a good friend that I think understands because he, too, might have RLS. But if I'm willing to share my story with others, who better than those that hang out with me, share vacations, holidays. Let them met the person ya'll know.
So very strange, this feeling that everyone here could know as much as those that live around me. Maybe more in a certain way.
So last night, I didn't smile through it, I sent it out. I'm testing out the theory. That sharing this statement may be helpful to us in a bigger, more personal/public way, than just with the board or with the docs, etc.
I'll let you know how it goes. It feels like a gamble, but, it's done now.
Hugs to you all.
I copied and sent out to my closest, LOL, local friends and a few family members, a copy of my Q of L.
To be honest, that was scary! Why? everyone say it together.....no one really understands unless they live this way.
I have been rereading a couple of post in this thread and I just got it finally. I've said it all along, that I hide most of what happens with RLS.
I really hide it from those local friends because I feel like it becomes too much to support or handle, what with regular life coming into play.
My thought last night was this.......I think everyone around me knows. I think they understand. Heck, I have a good friend that I think understands because he, too, might have RLS. But if I'm willing to share my story with others, who better than those that hang out with me, share vacations, holidays. Let them met the person ya'll know.
So very strange, this feeling that everyone here could know as much as those that live around me. Maybe more in a certain way.
So last night, I didn't smile through it, I sent it out. I'm testing out the theory. That sharing this statement may be helpful to us in a bigger, more personal/public way, than just with the board or with the docs, etc.
I'll let you know how it goes. It feels like a gamble, but, it's done now.
Hugs to you all.
What a brave thing to do, Becat! And, you know what? I'm going to do the same thing! Maybe it will explain the mood swings (sleep deprivement), how I am today, the new ME to my friends, and even my family! They THINK they know, but I don't think they really know me---not the "inside" me that I may think I show, but I really don't.
Thank you! I'll be selective--heck, I don't have that many friends I would WANT to share it with--TRUE friends. But, I have some and they are great! So, here goes!
Jan
Thank you! I'll be selective--heck, I don't have that many friends I would WANT to share it with--TRUE friends. But, I have some and they are great! So, here goes!
Jan
No one is alone who had friends.
Hey there
Hi Miss Jan,
Well, out of all that I sent out, not that many, I have gotten one response. It was supportive and warm. I'm not sorry I sent them today, a shock in itself. I'm ok with the fact that, I said it out loud.....what people do with that information is their own thing. And I didn't do ti with the intention to garner reaction. So I'm feeling even about the whole thing.
**This is for everyone that wrote a statement for me, for us**
This is my target for this year and what I'd like to do with the collective statements.
Since I have the chance to teach the other support group leaders about Q of L statements, I would like to include this collective (2004 & 2005) as part of my presentation. I'd like to share your statements with the other leaders. It would be helpful to let them understand how each of us wrote one, what we wrote about. If you would like for me NOT, REPEAT NOT, to share your statement with the other support group leaders, ........>
PM me, email me, just let me know. I will be instructing them to not reproduce these statements without my knowledge, so that your words won't be flying around out there without you knowing.
Of course, the keynote speakers and the heads of the foundation still will get the package.
Again I only need to know if you do not want yours used for the support group leader package.
My love and hugs to all. OOOOO and a howl at the moon.
Well, out of all that I sent out, not that many, I have gotten one response. It was supportive and warm. I'm not sorry I sent them today, a shock in itself. I'm ok with the fact that, I said it out loud.....what people do with that information is their own thing. And I didn't do ti with the intention to garner reaction. So I'm feeling even about the whole thing.
**This is for everyone that wrote a statement for me, for us**
This is my target for this year and what I'd like to do with the collective statements.
Since I have the chance to teach the other support group leaders about Q of L statements, I would like to include this collective (2004 & 2005) as part of my presentation. I'd like to share your statements with the other leaders. It would be helpful to let them understand how each of us wrote one, what we wrote about. If you would like for me NOT, REPEAT NOT, to share your statement with the other support group leaders, ........>
PM me, email me, just let me know. I will be instructing them to not reproduce these statements without my knowledge, so that your words won't be flying around out there without you knowing.
Of course, the keynote speakers and the heads of the foundation still will get the package.
Again I only need to know if you do not want yours used for the support group leader package.
My love and hugs to all. OOOOO and a howl at the moon.