I just sent my quality of life statement to Becat this morning, and I reallllllllly hope that more of you will take a few minutes to write one as well.
We hope you'll also take Jumpy's survey, so we have all the technical details. However, quality of life statements are what put the personal "face" on the RLS experience. It's the time when our personalities, our dreams, our hopes, our fears, our struggles really "come together"--- and I personally BELIEVE that if anything can motivate doctors and researchers to find out more about RLS, it's going to be our INDIVIDUAL and PERSONAL stories that will do it.
As Becat mentioned, it doesn't have to be long or fancy or "eloquent". Just say a few words about how RLS affects your life, your goals, your relationships, your overall mental and physical health. Say the things that you'd like your personal doctor to hear, but maybe they don't listen. Say the things you'd like people without RLS to understand about your life and this condition. If you're feeling hopeless, write that. If you're mad as heck, write that. If you passed it on to your children and feel guilty or sad about that (I do), write that. If you're just plain grieving for all RLS has done to you, your life and your future, write that.
PLEASE. You don't have to post it here. E-mail it to Becat (her addy's above.) I believe that they CAN make a difference!!!
HEY SARA GIRL, I am on it!!!!! I might redue my old one cause I have gone through alot of bull**** as far as docs are concerened at the time I sent one I was just starting the begging part. That is such a big part of rls all the begging and pleading done just to be heard. I think it makes me as angry at the rls does. hope your doing well dear girl~~~~~~~~~~~~~~~~~~Lyndarae
Doing great, thanks, despite my RLS kicking into higher gear last night and that and other things messing up my beauty sleep the last couple of nights (and BOY do I need THAT! )
Wanted to mention, for you and others, that even though my last Q of L was only 5 or 6 months ago, now, I guess, I think it was totally different than this one. (My old computer "ate" that one, so I can't compare, but Becat could probably verify that.) I think that a yearly Q of L is an AWESOME idea because every time we'll be at a different "place" in both our lives and in our RLS "adventure" .... so it's like a "new us" each time.
And I think that what our statements reflect about our progression and our current treatment in the medical community, etc., is extra useful when it's "fresh", too.
Glad you had a great healing ceremony the other night.
As dusk falls and my mind awakes,
I wonder what type of night awaits,
Will I be forgiven for a night of peace?,
Or struggle with legs and no release,
Maybe my arms will fight for sleep,
Or maybe I'll lie awake and weep.
I've gotten to know it's ways and tricks,
Like a demon inside me getting it's kicks,
'Leave me alone so that I can rest!!',
I'm fed up feeling so distresed,
Maybe I'll try some of my ideas,
But knowing I'll still end up in tears.
I fight this battle night after night,
Begging for comfort as I watch the dawn light,
'I've had it again when I thought I was spared',
Restless in a world as if nobody cared,
But another day asks if I can try once again,
With this illness nothing but pain.
Wow, PeteB
Your not just about bananas and Marmite........LOL Just joking around with ya.
That is lovely. Very nice to log onto. Is this here so that I may use it in my Q of L statements? I would love to, if that would be alright with you? Thank you for sharing it with us. It is always nice to see someone express in a different medium.
Sara, Thank you for you wonderful way of saying things. Yes, you hit it dead center........It's about how we live through the process. You put it beautifully and I am so glad you did. Awesome.
Lyn, My darling healer. You do not have to retype the whole thing. Those that gave a statement to me last year will have the updated letter attached to the older one, or how ever many you write. It could change from now to Sept. as well. So if you feel the need to work in the here and now, do so.
I can see our work ahead of us but I know that this process helps. Even if it is just for us, these statements make it easy to see how far we've come. The struggles, the victories. Heck, the people that get these packets are lucky to have them. This is the stuff that will never come from a lab, a test, a file.
BeCat - Although my case of RLS seems less severe than others on this website, I think it is worth sharing that even milder cases can severly impact ones life and ability to function "normally." I began writing here but quickly realized how RLS has progressed over the years. I will prepare something that is thoughtful and hopefully as eloquent as the way so many people has shared their expereinces. You'll definitely hear from me.
My theory, as a milder-but-persistent RLS case, is that milder cases often don't now what they have, and/or don't think anything can be done. (I always thought it was a personal idiosyncracy-- imagine my surprise when I heard by ACCIDENT that it had a name and others suffered the same way!) But RLS DOES DEFINITELY affect our quality of life, even in a comparatively mild form!!!!
Definitely PLEASE write something for Becat! The docs and researchers NEED to understand that "even a mild case" IS worth worrying about, because it DOES force us to alter our lifestyle, it CAN affect our quality of life/sleep, which things CAN rule our lives!
Thank you Lauren, I look forward to having your statement.
I think like Sara and you on this one.
I don't think there is a mild form of RLS. It all impact us, regardless of the level at which you suffer. Sara is right most people don't have a name for it so dismiss trying to figure it out. Or the doctors have passed it off as unimportant. I realize the medical community needs the classifications, but they don't sit well with me.
I thank you for the statement in advance. I really hope that people get the idea, from what we're trying to do here. Not only do we have a voice, but change must happen for all of us. Better diagnosis and understanding. Better treatment options. Less ignorance about how we live and fight for treatment. There is no better way to get this across than just your own words. I'm sure yours will be a lovely addition to the packet.
And I've said it before, We need our Sara, Michael (from New to RLS thread), Lauren, around here. If the only stories that are shared are from people with a stronger form of RLS, it counts out tons of newbies showing up to look around. We need everyone to keep this boat sailing. We always say that each one of us is different in symptoms and treatments, but we're on all a different level as well.
Hugs to all.
Thanks for your encouragement. I had every intention of writing tonight, but I am so tired, I am not able to put together coherent thoughts. It is 8 pm EST and I am struggling to keep my eyes open. Mornings are my best time as whatever rest I've gotten during the night helps rejuvinate me. This site has helped me in so many ways already even if I simply read other comments and thoughts and struggles. This support has been great. Unfortunately tonight is a very low energy night. I'll keep checking and defintiely post my Q of L statement.
Lauren,
Thank you so much for that. I am always trying to get statements, but don't worry about the time so much. The collect is an on going thing. I will gladly take when you write.
Rest and I hope tonight is a good one for you.
Becat, sweetie, it's been too long but I do have my Q of L statement for 2005. I'm going to post here and then I will also email you directly. Actually I wrote two. The last is a "tweek" to the medical profession. Use what you can and let me know if I can help in any way. I'll see if I can copy and paste to here.Quality of Life Statement 2005
Let me try to explain life on my side of the blanket. It’s like the monster that lived under your bed when you were little that was waiting to grab you at night just when you thought you were safe. If we were tucked in tight and didn’t move, the monster would leave you alone. Most of us outgrew the fear of that monster eventually. But for many of us there is still a monster that lurks just waiting for us to try to sleep. That Monster’s name is Restless Legs Syndrome. I have suffered from RLS for several years. Lying still, hoping the monster will go away is just not an option. When the symptoms start, lying still is the last thing you can do. You can feel the jerks and twitches coming on and there is NOTHING you can do to stop them. The only thing that sends the monster into hiding for a while is to walk. The symptoms are almost impossible to live with, the medicines to alleviate the symptoms are sometimes worse and the lack of understanding from those around you is heartbreaking.
Compassion and empathy are what we so desperately need from our loved ones. The dictionary defines compassion as: “a deep awareness of and sympathy for another’s suffering.” And we are suffering. Our families and friends feel (even thought they won’t always admit it), “Well goodness, you aren’t really sick, you just don’t sleep well. There are many people out there with major illnesses, so what’s the big deal with you? Just lie still and you’ll go to sleep.” No, we don’t have a deadly disease. We don’t even have a disease that is sponsored by a popular sportsperson or movie star. What we do have is a disorder that will not allow us to have a good night’s sleep. What we do have are legs (sometimes other body parts) that tingle or feel like we have ants crawling under our skin. Very often we have pain; burning, aching, tingling, won’t go away pain. Mainly what we have are legs that insist on moving. We have no control over these feelings. Compassion abounds for people when we can see their suffering. There is nothing wrong with that. But compassion shouldn’t be limited just because imagination can’t “see” when another person suffers.
Empathy is defined as: “an act of imaginatively stepping into another person’s perspective and considering how things look and feel from over there.” No matter how much my family and friends try to sympathize and understand what I am going through, not one of them can truly empathize with me. Nights start with the fervent hope that tonight will be different. Maybe tonight the Monster will be taking a vacation or will give us a break. But it doesn’t take long before we know that tonight will be a long and bleak one just like all the others. It gets very lonely walking the floor during the middle of the night. Sometimes we find something to do that helps to keep our mind off the symptoms, such as computer work or hobbies. But always lurking is the knowledge that tomorrow we have to get up a get through the day, working on little sleep and a dread already forming for the night ahead. The symptoms of RLS are so unlike anything that the average person has experienced that empathy just isn’t possible. How can we expect someone to empathize with us when the disorder we suffer from is usually considered to be totally imagined?
The Monster doesn’t know it yet, but there are people now that are becoming wise to him. There is hope that while a cure may not be in the very near future, there are medications that help and we are learning of ways to cope with RLS. Through education and research, we are getting the information out to the medical professionals, the general public and each other. The Monster may start finding his nighttime activities curtailed. But it is up to us, the night walkers and sufferers to continue to keep ourselves and our disorder in the faces and minds of those who can help us. Quality of life seems to be only important to the ones who no longer have it.
TO THE MEDICAL PROFESSION
The Modern Hippocratic Oath in part states, “ I will remember that there is art to medicine as well as science, and that warmth, sympathy and understanding may outweigh the surgeon’s knife or the chemist’s drug.”
I am 49 years old and have suffered from Restless Legs Syndrome for many, many years. Throughout those years, I have gone to countless doctors, traveled many miles, spent vast amounts of money and used up most if not all my sick leave. I have sat in so many waiting rooms hoping that this doctor could find out what was wrong with me. During the first years, I was told to lose weight, take in more calcium and look into counseling. I was tested for Multiple Sclerosis but nothing else. Three years ago I found a doctor who had not only heard of Restless Legs Syndrome but actually said I “might” have it. I was prescribed medicine and for the first time had some relief. I was also made to feel that I was taking up precious time that should be used for people with real illnesses. After that, four more doctors, each coming closer to getting the medications that would allow me as much relief as possible with Restless Legs Syndrome.
Maybe your question is; if these last doctors were doing you some good, why didn’t you stay with them? My answer would be obvious if you were a fellow RLS sufferer. Along with being a patient, I am a human being. I am more than a case study. I want, and am entitled to, a physician who will stop, take the time to listen to me and take what I say seriously. I will take no more of his time than I have to but while I am there, so should he be. Remember how I started this Quality of Life statement? I want and deserve to have that “warmth, sympathy and understanding” that should be a part of every physician’s patient encounter. An oath was taken, and that part of the oath is just as important as any other part. For me, the patient, maybe it’s the most important part.
My quality of life plea 2005
I am 28 years old and probably have had this "curse" for 5 or 6 years now. I haven't really had the energy to look back and see if I can remember when it started.
First of all, I had no idea there was a name for the uncomfortable feeling I was experiencing. I didn't know that it wasn't normal. I thought every one felt it. Maybe I was just too sensitive. Maybe I was just tired. I would literally work my way out of movie theatre seats, at bedtime I would kick, flail, stretch to the point of pain, rub, massage, jump up and down, pound, beat my legs at night wondering what the hell is going on.Then just give up and cry myself to sleep. I had no idea others felt this and it was something. I would wonder for years why I couldn't sleep, why I was always tired every morning no matter how long I was in bed. Hot baths at midnight, hot baths at 2 am what else was there to do? I just forgot about trying to figure it out. Nothing I could do about it anyways. I would travel from doctor to doctor telling them I am tired and sore and cranky and exhausted. They would say depression, anxiety, take some ibuprofen, some anti depressants. Oh man! What were they doing to me? I have had more blood taken than I ever thought possible. Nothing came back for anyone to be concerned about. Then finally I found a doctor who cared enough to see what I was doing at night and why I was soooo tired. She sent me for a sleep study. That confirmed Restless Legs Syndrome and Periodic Limb Movement. What? I had to look it up on the internet, never heard of it before. Oh ok so I am not imagining it and it isn't normal. Hmmmm... So my doctor prescribed Mirapex. At first it helped, then having to since double and triple the dosage, it is still doing ok. No more beating my own legs so I can sleep. However, I have had trouble sitting in class for more than 20 or so minutes due to the Rls coming out in my back, neck and shoulders. Is it possible for it to move around? Of course and common. Ok so I am not a freak, whew! Um, I am taking several things following whatever advise I can. Heres my current list
Mirapex .25 at lunchtime and .25 at bedtime
Amitryptaline (can't spell) 100 mg at bedtime
Naproxen 500 mg twice daily
Advil 200 mg on occasion
Tylenol 8 hour 1300 mg twice a day (two pills)
Magnesium-oxide 500 mg 1 daily
Vitamin E 400 I.U. 1 daily
Vitamin C 1000 mg 1 daily
Glucosamine 1000 mg 1 daily
Calcium-magnesium 900 mg daily
Single-day multi vitamin 1 daily
Ferritous Sulfate 325 daily
That's my pharmacy list for now
I can't really think of anything else to say right now. My brain is tired.
I hope this will help.
I love this site, It is a comfort to know that I am not alone in this and there will always be people that understand.
I'm in AWE.........
Rubyslippers and Sugar.......Thank you from my heart.
Ruby, you know how I feel about you. Nor can I wait til Nov.. I only wish I was closer to you physically. Your help with this and your support mean so much to me. Your words awed me. I'll use both, they are truely words from the masses.
Sugar, knowing that your training to become a nurse gives us hope. Your statement is surely going to be special. You've already changed since you first came to this board. I thank you for your support and your statement. Knowing what you are facing right now, it means so much to me that you took the time to write one for me.
To anyone that wants to write a statement. It doesn't need to be anything other than your own words. Just how you feel..........Together our voices are louder than one of us alone.
I love you guys...corny, but I do. My heart Family Members.
Thank you, again.
Hugs to all.
)
.... so it's like a "new us" each time.