Quality of life 2006

For everything and anything else not covered in the other RLS sections.
becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Quality of life 2006

Post by becat »

For those that have written one in the past, your more than welcome to update your QoL for 2006, I love to add the updates, good or bad, it's real life. It all counts. We know from how the community is using the term Quality of Life has changed and I've even seen one doc talk about QOL, lol.
So for all you newbies, here is what I do for part of the time at the National comvention. I make sure each keynote speaker, normally a respected expert (doc, volunteer, or advocate) gets a QOL package. I promise to use them sparingly and wisely. I promise to use them with care, for they are your words, your stories.

If you had five minutes to talk to someone that was working on RLS. The doctors, the researchers, the RLS Foundation and it's membership.....
WHAT WOULD YOU SAY TO THEM ABOUT YOUR QUALITY OF LIFE?


It's not an easy thing to do. Rehashing over the struggles RLS has made for you, your families, your friends. Believe it or not I've been told and know, that it turns out to be a hard thing to describe. To ball up into one statement. You may not connect all the dots of your struggles until you start to pick them apart. You may have an awesome story of hope or success. They are not all gloom and doom. It is simple your five minutes to voice your opinions to someone that may be able to make a difference.
You are helping to put a face to RLS. That is an important thing to do. The researchers, the doctors that treat us need to get past the chart, the test results. They need to see the faces. Start to put real lives behind the humans they treat. This is a way to put our hearts into their work.

For those of you that have written a statement for the meeting in Long Beach or Orlando......bless you, your voices were heard and you made a real difference. However, I would like to have updates. I recently spoke to one of our members about the fact that my first statement was angry and how it has changed. I would venture to say that with successful treatment some of you would change your Q of L then as well. You may give it some thought and maybe somewhere throughout the year update me........as many times as you like to.
I can't tell you all how much this simple little project changed the way I felt. I know that most of my strength came from the caring, loving, wonderful people on this board. I made myself understand that WE must be our own Gatekeepers. It brought out my grief and certainly brought on the fight. The next year's was after a good treatment path was found for me and my statement changed to hope for others.
I will promise the same as I did last year. With your trust I will make sure that the people at the National RLS Foundation's meeting in San Antonio, TX., will know about you. Hear you. I can only deliver them, smile, and shake hands......but they will have your words. Your hearts. Your stories. They need to have us there and they need to take us home with them. When they go to work, let them know us. We make up the real faces of RLS, that needs to be in thier hearts when they work for us...and so many work so hard for us.
******
This can be emailed to me here
or at
rlsbecat@yahoo.com**************
The only other thing I can think that makes this better is if you want to email me a picture that I would be allowed to use with your statement.
Thanks in advance.............always our moon
Lynne

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

QOL 2006

Post by becat »

I can't say for sure that this will be the final edit, it's not, but it's a start.

Quality of Life 2006
Lynne/Becat

I'm not sure why i was born, not the true reason that God sent me to this earth. I'm never sure why I have faced what has been put in front of me or how I did, but so far, so good.
It hasn't always been that way. Thankfully, I've made it this far and intend to make it further yet.
RLS is my first memory of life, yes, that is a fact. Painful and stressing as it was at 3-4 yrs. old, I managed well. Certain things are just they way they are, maybe your born a certain way, maybe things change, things happen.
I'm so very lucky, I had a family that loved me. My mother, my father, my beloved and sorely missed grandmother, they gave me the sense of worth, self worth. Somewhere in my life I could have been diagnosed with RLS, so much earlier than I diagnosed myself. Why did I have growing pains at 30? or 35? Could my legs really wake me up?
All the testing, so many doctors, the expense to my wallet and my sanity, my family and friends, no answers to show for it. I was at the end of a rope that had no hope, no strength, and no end, but it felt like it.
Alone one night around 2-3 am, another sleepless night, searching medical libraries on line for some clue about what was happening to me. I was able to read a small part of an article written by Dr Ondo and, I believe, Dr. Becker (if I'm wrong I do apologize). It mentioned growing pains, and then went on to talk about problem in the legs that was more intense at night. They were talking about Restless Legs Syndrome. It had a name. I cried for a good 2 hours. I finally had hope that someone would understand what I was going through. HOPE. HOPE is a powerful thing.
It only took a few minutes to find that Dr. Becker was near me, here in my area. Blessings from heaven, they were mine. You see, he understood, and that made me the lucky one.
What I and others, new to this RLS community, don't often understand, nor take well, is that it takes time to find what works. What works might change, need a tweaking or 2 or 3. Don't let us loose hope during those times.
Have you any patients that you feel don't really open up to you, making your job easier? It might be because we heard we were crazy, depressed, or whatever the trash term of the week was, just one too many times. Understand that you might have to hold out your hand first, be trustworthy, use some social skills to gain our trust. I realize that might sound harsh, but we are sleepless, sometimes in pain, and often lost as to what is going to become of us. Please help us find the HOPE in your care. We are often long term patients, so get to know us, let us know were safe in your care.
To my doctor, Dr. Phillip Becker. I once called you a gatekeeper, that was my mistake. My fault. I apologize for calling you anything other than my doctor, my partner in my RLS. I've grown and I'm still learning how to trust, to talk about what is the truth in my life. I thank you for sticking with me long enough to give me my hope. I simply can't Thank You enough for that.
To the researchers, doctors, and the foundation, I offer this challenge....Help us educate the rest of the people around us. Help us educate our other doctors, as many as we can, as fast as we can. Help us get the medications that work, that help us function within our lives. I'm no longer on the sidelines of my life. My Quality of Life is working for me. I'm living in my life, as apart of it. I'm no longer watching life pass me by one slow tortured moment at a time, I'm running past it.
We as a community can say it is now the time to be heard, recognized, and live with the rest of the world. Let our Normal be a good Normal.

Thank you for your time in reading this. Thank you more for all that you do for me, this community, my son if he needs you one day, and my future grandchildren.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

here is a link to some of last years QOL conversations if your looking for how or what or style.
http://bb.rls.org/viewtopic.php?t=536

Not everyone post them publically, and that is just fine, some do.
love to all
Lynne

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Thankyou both for sending a statement in. No names, just huge hugs and thanks for adding your voice to our progress.
always our moon
Lynne

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Ok ya'll I'll make this one brief.
I would like to know, from those of you that have written statements for me, this year or past.......

Who is going to the National meeting for sure?

Please PM me here or let me know somehow.
Thank you more info to come.
Love ya'll
Lynne

Anonymous

Post by Anonymous »

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Last edited by Anonymous on Thu Mar 29, 2007 4:08 pm, edited 1 time in total.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Hi Em,
I'm sorry to hear that and I have read some of your post lately. :(
I wish it evens out soon for you.
Don't worry there is still plenty of time and your answer is still just awesome. I love that you'll be there. Can't wait to see another new sister of mine. My baby sister of course LOL.
Hang in ther honey and don't let this stop you from thinking your going the right way, it's all a matter of time.
I'll be in touch.
Thank you
Love ya
lynne

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

bump

tazzer
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Location: Northern Virginia
Contact:

Quality of Life Statement

Post by tazzer »

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, except pain, 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

ViewsAskew
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Post by ViewsAskew »

Dee, it was wonderful. Thank you for sharing it. I know Lynne will be thrilled when she gets back and find it waiting for her. It will be like her present.
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.

abrobinson
Posts: 26
Joined: Sun Aug 20, 2006 5:43 am
Location: Lexington, KY

Post by abrobinson »

ok, here's one from a very new-newbie!!!

My 11 year old daughter brought it all back to me. Sometimes she lays in bed or on the couch just aching in her legs, near to tears. I wonder if this is the beginning for her?

I can remember doing that as a child, younger than 11. I've had leg pain, cramping, fidgety-ness all my life off and on. Mom remembers me laying in bed crying. The drugs available to children are not at all what is needed to take care of this deep pain, not then and not now. We tried all the regular stuff - warm baths, warm milk, leg rubs - it didn't work.

I'm 44. I've had RLS symptoms off and on all my life. I didn't know what it was called - just that my legs ached or were uncomfortable and I knew that getting up and moving around helped. So that's what I did.

A year or so ago I saw the Requip commercial on tv. "They make a drug for everything" I remarked. I identified immediately with the symptoms described, but I had no idea just how grateful I would be to have such drugs available until months later.

That crawly feeling came one night, and it hasn't left. After 2 weeks of not sleeping, trying to self-medicate and walking the floors I went to see my doctor. RLS. Requip. Which was lovely for about a month. The symptoms began to present themselves earlier in the day. Dosage increase. Then a few weeks later came the pain. I couldn't figure out what I had done to cause this pain everyday, but I knew I had to do something to make it stop or go away. Self-medication again. Now the crawlies and the pain starts mid-morning, around 10.

I saw a neurologist today for the first time. The folks here at the RLS Foundation have educated me on so many levels, and I am so thankful for that help. The neuro I saw was wonderful. I was a bit apprehensive - I've heard so many stories of suffering from folks who have been described as crazy, needing attention, drug addicts, whiners, drama queens...the list goes on and on. Folks who have suffered for years for so many different reasons. Would I end up in that same boat?

We are working on a medication treatment plan. He is doing tests to rule out everything else. He understood. He is very well-educated and sympathetic. Thank the Lord!!! I feel very hopeful now.

My quality of life??? I don't think I suffer as much as others do right now. I know that this condition may well get worse. I know that the drugs help, but the drugs also have side effects that affect quality of life. I can't really plan to go out in the evenings. I'm having a hard time making it through the day working at this point. I'm fortunate in that I don't sit at a desk all day. I work in sales. I'm driving all over 5 counties and working out of my car and home office. So I can get up and move around. However, I can't drive and take these drugs in increasing dosages. That's one of my fears: how long before I have to take so many drugs during the day that I won't be able to keep this job? And I LOVE this job!

Another fear: my daughter is 11. She is active in school and church. I want to be able to particpate in her activities, even if only as an onlooker and cheerleader, going on the trips that are required of parents and that she wants to go on and attending events in the day and evening hours. While my family is very supportive and loving, my husband is not always available to drive me to and from events.

One of my greatest fears is that my daughter, too, will suffer from this malady in her lifetime. Are her "growing pains" a pre-cursor to this condition? Will better and newer drugs be available to her if so? She wants to do so many things. She wants to have children and grandchildren and travel and work and lead a full and normal life. I do so hope that if she is affected there will be avenues of relief available to her that do not affect her quality of life in some sub-standard way.

I hope to be able to actively participate with my grandchildren when I have them someday. I dont' want them to come to "Grandma the Zombie's" home. My mother is 69 and has always been so active in my children's lives. Unfortunately now she is ill and is so sorry that she can't do the things with them that she once could.

Quality of life...my life is good. Really good. I'm not looking forward to missing anything. I have always been very independent, very active. I pray that this will not affect my life adversely, and yet in many ways it already has. A friend invited us to come to their cabin for dinner, about an hour and a half away from here, to come and spend the day, enjoy the outdoors, walking and talking and laughing. And all I can think is how loopy will I be from the drugs? How achy will my legs be that day? Can I sit in the car that long to drive there, and driving back that evening how much pain will I be in, trapped in the car unable to get up and move around?

You see, I don't mind the drugs. I don't like having to take them, but I don't mind what they do to me. It's so much better than the discomfort and the pain. What I don't like are the limitations that the effects of the drugs put on my life. I can stay at home and take them. My family understands what they do to me. But the effects limit what I can do and where I can go and be safe and alert. They rob me of my independence. And I'm far too young to be robbed of that. We expect a bit of it to happen as we age. But like I said, I'm 44.

ok, so that's it from my new standpoint!!! i would like to think that in some way i might be able to help someone else who suffers from this or any other malady i have had or will have. i believe God put us here to love each other and help each other and i'll do all i can to do that.

thanks for giving me the chance. and thanks for all of the info. i was so well armed at the neurologist's office today and he wasn't one bit offended that i chose to educate myself (with some help from my friends here!!!) it was one of the best dr's visits i've ever had. we were both able to talk intelligently about this condition and discuss my options and i think we're on our way to a treatment i can live with.

ViewsAskew
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Post by ViewsAskew »

A - thank you so much for sharing that. This will help Lynne's cause tremendously. I hope you got something out of the experience, too.
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.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Well, silly me........I come home to find yes a couple presents for me and I still can not read one that doesn't bring me to tears.
Dee and ABrobinson, I thank you. Wow, I can't think that I could ask for two better statements. Each one of the statements I've gotten is a treasure to my heart.
Wonderful to have both of your voices join ours and hopefully let the bigger ears listen. Learn.
This project has been a pleasure for me and I believe helpful for All of us.
So please if anyone thinks it's a "me" project, it's not. It's an "US" project, I am just the delivery person and the safe keeper. It's all, us all the way.
Thank you for the lovely homecoming.
My heart and love to you both.
Lynne

Rubyslipper
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Location: Missouri

Post by Rubyslipper »

I actually have one almost done and will email it to you. As for the picture, you know I am not a trendy person so maybe the picture is best left unsent!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

yeah right!

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