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Re: Dealing with tuff love and people with RLS

Posted: Wed Feb 20, 2013 11:56 pm
by ViewsAskew
doety wrote: (I know we're changing the name, but NUTS....I feel like people finally are learning about RLS and think we'll just confuse them. Sorry, know we're not supposed to argue with it.)

From my perspective,I don't think the Foundation doesn't want an argument - just that it won't likely change anything at this point. The Study Group made it's recommendations, they were accepted, and now we move forward. Talking about it can be helpful if it helps us talk about our concerns, though.

To me, there are many things that changing the name tries to address.

Any syndrome immediately is at a disadvantage in many ways, from perception to fundraising for research. Those scientists can't work fast if no one is helping fund the research. Calling it a disease helps us tremendously in those ways. We only found out in the last few years that it is a disease - there are genes for it. That changes things significantly and keeping the name doesn't help us capitalize on this.

The name it currently has is made fun of by many in the US. That hurts perception tremendously, too.

And, having legs in the name hurts all of those who have it in other body parts - heck, my doctor just thought it couldn't be RLS/WED because I have it 24/7 - the perception is it's only at night. Since legs is in the name, I've heard doctors say that it can't be elsewhere.

There is no doubt in my mind that changing the name will be hard. And some people will be confused. Hopefully that won't last long! In the long run, let's hope the benefits outweigh the concerns. As new students go through med school, they will get a much broader view of it and won't be misguided by the name.

Am I looking forward to it? Partially, but it's going to be very hard!

Re: Dealing with tuff love and people with RLS

Posted: Thu Feb 21, 2013 11:19 am
by Polar Bear
I feel that the name RLS automatically raised a cynical eyebrow suggesting what a lot of fuss about nothing and that puts me on the defensive right away.
Rather like how fibromyalgia used to be considered yuppie flu.... and something that didn't really exist.

I've got both conditions and I'm delighted to be able to call this condition of WED a 'disease', and also more that happy not to be saying RLS - I was saying it almost apologetically.

Without wanting to get into a debate about the name change (it is changed and that's it) I feel more that with the name of WED the condition is real, valid, and that I am worthy of treatment. That can only be good for my own emotional welfare.

Re: Dealing with tuff love and people with RLS

Posted: Sat Mar 30, 2013 4:17 pm
by pamndorr
I just ran across this post and had to give my two cents regarding the name change from RLS to WED.
Although it is confusing some people as to why the name change... I for one am glad they changed it. For a long time after being diagnosed with RLS I didn't tell a lot of people. I had already heard all the stuff out of other peoples mouths laughing about what a joke they though thought this conditon is. Then add to that the commercials for the Mirapex and all the problems it can cause with the side effects....gambling, sex and shopping and that just reinforced certain peoples attitude about it.

But the main reason I am glad it changed is because RLS makes people think this disease is only in the legs...which it is not. Mine is mostly in my ankles and one arm. So the RLS just didn't fit for me. With the name change to WED it tells it exactly like it is a disease. Now when I say I have Willis Ekbom Disease I don't get blank stares anymore...I have people wanting to know more about it. This is a disease and it needs to be treated like a my opinion.

Re: Dealing with tuff love and people with RLS

Posted: Sat Mar 30, 2013 7:04 pm
by Polar Bear
I usually just say Neurological Movement Disorder..... and don't explain much further, only to smile and say... excuse me, but I have to get up and move.....

Re: Dealing with tuff love and people with RLS

Posted: Mon Apr 01, 2013 10:52 am
by badnights
The people who actually want to know it about will ask, if you say something like Willis Ekbom or sensori-motor neurological disorder. Then you can give the full description, and they will listen (hopefully) and that will be one more person in teh world with better understanding.

I dont use "sleep disorder" because it's like saying you have insomnia, and people will mis-interpret that. I also am leery of saying neurological disorder without adding "movement" in front of it, because one person thought I meant psychiatric !

oops I'm typing under zopiclione again - sigh - but the worst of it has worn off I think. I didn't take my last dose of HM early enough, so the two peaks are going to miss each other and I might not get to sleep at all tonight -- to be followed by yet another wasted day. Sigh again.

Re: Dealing with tuff love and people with RLS

Posted: Thu May 02, 2013 11:55 am
by jakesmom
Wow!!! I can totally relate to this topic.

My mom doesn't understand, but she is starting to see how much I have changed. I don't come around my family much because I just want to be left alone. My mom sees that I have gained alot of weight, but she doesn't understand why I don't just stop eating unhealthy foods. Try explaining stop to the Mirapex induced monster that drives you to eat, obsess about food, and has the audacity to turn off your full switch. Mom got an up close glimpse of the attitude I get from doctors when I beg to be taken off mirapex. She believes them when they say DA's are my only recourse. She thinks to some degree that I am drug seeking. But she is finally starting to see what Mirapex is doing to me and my health.

My coworkers know I am doctor shopping, but they didn't know me 10 years ago, so they never met the real me who had short term memory, could multi task, and wasn't in constant pain. They see my swollen body, but they don't understand the battle with fluid retention.

I feel like a liability when I am around people which is why I keep to myself. I'm tired of doctors who tell me to lose weight, but won't acknowledge the eating compulsion caused by Mirapex.

I'm venting about Mirapex again and for that I apologize. I can relate to those who just wish they wouldn't wake up one morning. I don't wish grieving on my family and friends and I don't mean to sound selfish, but if there is anywhere I can voice that and have people get it, it is here.

I appreciate all of you so much; your support, your advice, your shoulders, and your ears (eyes).

Re: Dealing with tuff love and people with RLS

Posted: Thu May 02, 2013 5:03 pm
by pamndorr
Jakesmom...always remember that when the people in your life don't seem to understand...the people here do. I have been so depressed and would think how much easier it would be to just close my eyes and not wake up or to just drive off a bridge. I just went through that...seems to come and go. I blame the Mirapex and lack of sleep for a lot of it.

I have support from my husband and mom and those close to me...but they don't understand all of it and I am not sure they can understand it. This can be a very lonely disease if you let it take over your life, try not to let that happen. Keep working with your mom and friends and give them a chance to understand. I think we have all been where you are at right now...I know I have been and it makes this disease even worse when you feel alone. If I am honest with myself I don't even know who I am anymore...there is a new me and I am trying to like the new me and accept that my life has changed and it is not what I thought it was going to be. I don't like where my life is at the moment...but it is what it is.
Not sure if you are a fan of Uncle Cracker..but he has a song and it is called" It Is What It Is" I heard that song and I kind of came to the conclusion that the lyrics in the song are true so I have been repeating the chorus to myself a lot...
It is what is and it what it ain't
It's life and it's love and it ain't gonna change
It's a beautiful mess
I don't wanna miss
It sits in the spins and it is what it is
Not sure if that helps...but for me music makes everything a little bit better. Hang in are not alone. Hugs

Re: Dealing with tuff love and people with RLS

Posted: Thu May 02, 2013 8:00 pm
by Polar Bear
I never heard of this guy so I googled him

Hmmm.... I could listen to him.... liked it a lot.

Re: Dealing with tuff love and people with RLS

Posted: Thu May 02, 2013 9:00 pm
by Reverb
My best friend has mild rls. Mine is severe. She is the only one who truly understands a portion of what I go through on a daily basis. I think it's hard to explain to people. And since they don't see anything physically wrong they may be quick to judge. My boyfriend knows and is fairly supportive. Other than that I have not told anyone in my family. They are all supportive of everything, I just don't have the energy to get into long discussions about it. When the time is right, or when I cant hide it anymore, I will give my parents a couple of books they can read that will explain it quite well. I know they will be upset for not telling them sooner. My choice though.

Re: Dealing with tuff love and people with RLS

Posted: Thu May 02, 2013 11:41 pm
by pamndorr
Polar Bear...I think Uncle Cracker used to sing with Big and Rich once in awhile. This new cd that he just put out was the first time I had really ever listened to any of his stuff. I love the whole thing...not one song on it that I don't like.

Funny how this one song happened into my life as I am trying to adjust and accept what my life is now. This has not been an easy adjustment for me...physically or mentally. This song just made me realize that I can't change things.. it is what it is. I can accept it and deal with it the best that I can or I can sit and spin and get nowhere.

It is what it is....and is not fun.

Re: Dealing with tuff love and people with RLS

Posted: Fri May 03, 2013 12:44 am
by Polar Bear
pamndorr - sorry... I haven't heard of Big and Rich either. I'm learning all the time.

Reverb - I'm so sorry that you feel you don't have the energy to get into discussions that may follow if you told your parents about having WED. Any chance of you
printing out a leaflet from the Foundation's site to give them or give them the books you mentioned, saying that at present you are weary and don't feel up to discussing it but that you wanted them to know.

I thinking from two angles here: firstly, as a severe 24/7 sufferer myself I think I cope best when everyone about me knows of this disease and that I have it. Because it is a relief not to have to try and hide it.

And secondly, as a mother I'd be so truly devasted to think that my child had been going through the torment of WED and felt unable to tell me.

It is of course your choice and you may have very good reasons for saying that you wouldn't tell them for as long as possible.
And please forgive me if you feel I have spoken out of turn.

Re: Dealing with tuff love and people with RLS

Posted: Mon May 06, 2013 7:49 am
by badnights
reverb, the book by Robert Yoakum is the one I give to people who don't understand what it's like to have the disease. He tells the suffering better than the purely medical books, though he gives the medical facts as well.