Idea for a NightWalkers story spurred by James333

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
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wkitsteiner
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Idea for a NightWalkers story spurred by James333

Postby wkitsteiner » Fri Dec 28, 2007 1:37 pm

I had the opportunity to speak with James333 yesterday and am glad to see he posted on the Board. One of the questions he posted on really got me thinking. James asked HOW he can get his family and friends to understand his RLS.

I think this is a fantastic question and as I look through our NightWalkers archives, I realize that we really haven't done a piece truly providing a guide for others to understand living with RLS.

I would like to include a piece in NightWalkers but being as I don't have RLS myself, would need to enlist some help. I am thinking it might be nice to create a small handout that people can give to their family and friends to help explain what RLS is and what they can do to help?

If you are interested in helping, you can reply to this post, or you could email me at kitsteiner@rls.org. I am in need of someone (or multiple someone's) to actually create the handout or at least provide me with the text and points to include to create the handout. I, of course, can edit this and help you with it -- however, I think it would come much better from people who have RLS than from me, a writer and communications person.

Anyone interested?

becat
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Postby becat » Fri Dec 28, 2007 3:56 pm

Yeah, great idea.

An email will be on the way in the next 24 hours to you. I had actually done a program like this in my own group meeting about a year ago.

I'll send you what I have.

Everyone is welcome to post your thoughts about it here on the board, as it would be helpful to have everyone's ideas. Also, please email Wendi with your ideas or copy your posting here.

We all have people in our lives that "don't get it", so this is something everyone can help with. The kind of group project that will certainly make a difference on the positive path for many people.

Thank you, Wendi for giving us the chance to help.

Lynne

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Postby ctravel12 » Sat Dec 29, 2007 1:42 am

Wendi, I will also e-mail you as this is such an important subject. Thank you for doing this.
Charlene
Taking one day at a time

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SquirmingSusan
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Postby SquirmingSusan » Sat Dec 29, 2007 4:16 am

I asked my dh and he had a couple thoughts - First, that I've been feeling badly for so long, and only in the last year or two we have narrowed the cause down to RLS. So it's been a long, long process.

Second, it would help to get rid of those stupid ads for RLS medications that make it seem like the "disease of the year."

Third, change the name. RLS just sounds like some kind of joke.

His thoughts in a nutshell.
Susan

becat
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Postby becat » Sun Dec 30, 2007 1:54 am

n/a
Last edited by becat on Tue Jan 12, 2010 11:18 pm, edited 1 time in total.

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jan3213
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Postby jan3213 » Sun Dec 30, 2007 7:53 pm

Wendi, here's what I have. I hope you can use something from it. Thank you for doing this.

Jan

*****************

Talking to family and friends about RLS is one of the hardest and most important things we with RLS can do. For years, my husband walked the floor with me and saw me suffer, yet would say, “Why don’t you just go to sleep?” when my legs wouldn’t let me rest at night. He thought he understood, but he didn’t—not really. Now, he knows instinctively when I’m having a bad evening or night and is so caring. Now that I look back on our relationship, I realize that men like to “fix” things and my husband wanted to “fix” my RLS. He couldn’t, of course, and that was a source of frustration for him. It honestly took years of living with me, going to doctor’s visits with me, seeing me suffer for him to get to the point he is at today.

I’ve had to slowly educate friends—some understand, others don’t. I don’t know if there’s an easy solution. I haven’t found one. I have just learned to be honest and not apologize when I can’t sit still in a movie, or when I have to get up and walk at a function, etc. I think part of the solution is just getting over being self-conscious about RLS and being straightforward about what we have.

I try to explain what the feeling is like. But, unless you have RLS, you really have no idea what we go through. I used to get so frustrated with a particular co-worker who refused to believe there was anything “really wrong with me.” Finally, I just had to face the face that some people are unsympathetic and really don’t care about others. She was one of those people. But, I have friends who do care—who are sympathetic. I don’t talk about having RLS with a lot of people. But, I’m no longer self-conscious about it. I no longer apologize if I can’t sit still, etc.

I think it is much easier to talk about my situation and discus RLS with others here on the Discussion Forum. The Forum has been a lifesaver for me. I don’t utilize it as much as I used to, but I know it is here and I know I have a place I can go to if I’m having a bad time of it in the middle of the night, or anytime, for that matter. I’m not alone. I have a family.

This Forum has been a Godsend to many, many people. Personally, I don’t know what I would have done—where I would be—had it not been for the RLS Discussion Forum. I have learned so much about RLS, about myself and have had the kind of support I would not have found anywhere else.

I hope something I’ve said will help someone else, as others have helped me.
No one is alone who had friends.

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Postby Sojourner » Mon Dec 31, 2007 4:00 am

I started this post several times so I'm just gonna ramble on for what it's worth. I think the pamphlet is a great idea and certainly lot easier to digest than one of the books that perhaps may address the issue in detail. Perhaps related to what someone said about the current rls commercials as perhaps underplaying the seriousness of the condition... perhaps the pamphlet could intentionally focus on the seriousness of rls by emphasizing some morbid-like facts or statistics--if they exist or can be found. What I mean is that perhaps if, in briefly describing rls, reference could be made not only to the number/percent of people who have rls but the number/percent of people who have suffered or experienced a variety of calamities attributed to rls. These could be such things as divorce, job loss, disabiltiy, or suicide. I have read or heard reference to these in books or articles but have never seen any "data" about these types of impacts. Maybe they don't exist or cannot be factually accounted. Guess what I'm saying is that I think many have expressed the opinion that rls is trivialized in in the press, tv, or even closer to home. So, if we can or are able to devote a small amount of space in a pamphlet emphasizing the dark/gloomy side of what rls can do that this may get people who read this pamhlet to take the condition of their friend, loved one, or spouse more seriously and respond to them more "appropriately."

I guess I have been lucky so far in that, up to this point, my support has been appropriate for my level of severity. Maybe that will change in the future but hopefully not. To this extent, at the moment, I don't have many first hand suggestions other than the above.

M.
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Postby becat » Mon Dec 31, 2007 4:55 am

n/a
Last edited by becat on Tue Jan 12, 2010 11:19 pm, edited 1 time in total.

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Postby SquirmingSusan » Mon Dec 31, 2007 7:14 am

I'm thinking that perhaps we could find stories or quotations from here in the message board that talk about the horrors or RLS...

interspersed with some data, like Mark was talking about.

There are some very vivid stories from sufferers here in the message board and if we could quote some of them and then say something about

"Studies show that quality of life for a person with RLS is worse than for Diabetes."

Then another quote and...

"It is estimated that x percent of severe RLS sufferers become suicidal"

Then another quote or story and...

"RLS sufferers even have difficulty getting doctors to take them seriously - each sufferer goes to an average of (lets say 10) doctors before getting adequate treatment.

etc, etc, etc.

Something with real words from real sufferers and then the "facts" about how miserable we are.

Now I know that there is a study about quality of life being worse than with Type II diabetes, and I could find that. What other studies are out there showing just how miserable RLS is? I can do some looking. I'm guessing Ann can find some quickly, because she posts a lot of them. Anyway, I'd be willing to come up with some "science" if some others would like to find poignant quotes and stories.

What do you all think?
Susan

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Postby ViewsAskew » Mon Dec 31, 2007 7:48 am

Susan and Mark, your posts made me wonder how many studies have been done and if we aren't overdue for one that had a lot of participants, male and female, especially from multiple countries. This might be best done in such a way as to break out answers by the degree to which the person has RLS.*

How many doctors do we go to before we get help?

How many years before being taken seriously?

In what ways, in terms of percentages, do people feel that their RLS has negatively impacted them (relationships, socialization, work, health, etc.)?

How many people with RLS would trade their RLS for another disease or disorder?

Etc.

*I was reading a blog earlier today and a person with RLS was ranting against the RLS drug ads and the drug treatments. S/he said that while s/he had RLS, it wasn't a real bother and that no one needed medication for it.

It made me realize, once again, that it's not only those without RLS who may need some education....it's amazing to me how many people (I myself at times) can find it so difficult to accept something if they haven't personally experienced it. And, even if they have experienced it, if it wasn't exactly as you experience it, they can't accept your perception of it.

Wendi, there seems to be people who get it intrisically - they can relate it to something in their life. They have immediate empathy.

But, many people have to work harder to get there. Some give you the benefit, but don't really understand it. Until, as Lynne illustrated in her story of her husband, somehow one or the other of you find that one "key" analogy or experience. Lynne's husband's key was when he was in a specific type of pain that he could then say, Oh, I get it! The analogy has to be something that the person has experienced and that they value.

Some people have no difficulty at all finding that key analogy. I have a few friends who, when I explained RLS, said, "Oh, that's terrible - you'd never get the sleep you need. That affects everything, doesn't it?" They proceeded to name all the ways in which my life had been affected.

Lynne's husband proferred his understanding to her...he accepted that it was hard and that she had difficulties, but it wasn't until that moment when he also was in constant pain that he really understood. People like that want to get it - they have empathy - they just haven't found the right analogy to have a shared experience to which they can relate.

Then there is my MIL - like Jan's husband, it's taken her many years to truly get it. Unlike Jan's husband, and many men, she wasn't trying to fix it, she just couldn't get it. And, to the type of person she is, without that key, she didn't have much empathy for me. She had to keep asking me questions until she could find a way to relate it so that it had meaning to her. I couldn't find the key. I offered analogy after analogy, to no avail. She found it one day when she asked a question - I don't even remember what it was, now, but I could see the lightbulb. Since then, I am the only family member that is "allowed" to sleep late without being chastised.

Wow - guess I got long-winded. Hopefully this is helpful in some way.
Ann - Take what you need, leave the rest

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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.

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Postby becat » Mon Dec 31, 2007 9:00 am

I get the part about my husband, but don't understand abut Jan?
Coulf you explain it please?

Lynne

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wkitsteiner
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Thanks everyone -- keep it coming!

Postby wkitsteiner » Mon Dec 31, 2007 12:46 pm

Thanks everyone! This is some great stuff ... I especially like the idea of getting some quotes from past things that have been said on the Board. I think that is a great idea. If you have any of that, I'd love to see it!

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Postby jan3213 » Mon Dec 31, 2007 3:22 pm

Wendi, here's something from a thread I started several months ago about this very thing. As you can see, my husband is truly very sympathetic and empathetic, but I think this will clarify things a bit more. I truly believe the old saying, "Walk a mile in my shoes..." People really can't understand completely what we go through. We have to be patient (as much as possible) and, eventually, most of our family members/friends will understand. I know some may never. But, if there's an ounce of compassion in people, they will "get it". But, it's hard...it's hard.

jan3213 wrote:Just thought I'd start a new thread. You can insert whatever you want to in the heading. But, I want to tell you all about my husband.

Those of you who've known me for a long time, know that there was a time when my husband didn't get it at all (RLS). He'd say things like "Why don't you just go to sleep?" or "I couldn't sleep either--everyone has a night like that." And, all of this was while we were living and sleeping together (well, we are now LOL), but you know what I mean. He saw my agony, etc.

Over the past few years, he's been getting better and better. But, we were just on vacation in Myrtle Beach, S.C. and, after a day of walking, walking, WALKING in Charleston, my legs were crazy! I could have taken the whole bottle of meds and it wouldn't have helped. You all know what I mean.

Well, that night, was horrible. I practially tore the sheets off the bed kicking, stretching, etc. But, all night, my husband would scratch (or tickle) my back, trying to get my mind off of my legs. Bless his heart. He said, "Honey, is it your legs?" before they got really bad and he started tickling my back. I'd fall of to sleep, only to be awakened by my stupid legs and pain. He spent probably two or three hours doing that for me. This isn't the first time, but how far we've come!

So, for all of you who have spouses, families, friends, or whoever, who don't get it, hang in there. Once in awhile someone will get it. My husband and I have been through so much. He's been so good this year after my back surgery, now diabetes and my RLS. It does happen. God love him!

Hang in there all of you!!!

Love
Jan
No one is alone who had friends.

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Postby ViewsAskew » Mon Dec 31, 2007 7:55 pm

becat wrote:I get the part about my husband, but don't understand abut Jan?
Coulf you explain it please?

Lynne


In Jan's post above, she said that her husband was slow to get it (though he did and is now wonderful)....like my MIL. Jan said he was trying to "fix" it, but couldn't, so he was frustrated. My MIL wasn't trying to fix it, but she just couldn't get it, but couldn't "allow" me any slack until she did get it. So, she'd say things like Jan's husband, "Why don't you just go to sleep?"

Hope that clarifies it for you.
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.

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Postby lyndarae » Thu Jan 03, 2008 4:30 pm

There are phampets at the human delvelopment center here in my town, they are very informative and right on the counter where everyone can see them. I have also seen them in other doc offices. I could get one and find out who published them if it would help anyone. As far as our loved ones go they are just like we are they all have different feelings and ideas about our rls...............men tend to always feel they need to fix things its the way they are, lets not even try to compare how our patners deal with us and our rls. People get it when they get it, some never do. And thats their problem not ours. What we choose to share about our patners, is to help others not to be judged about how or when they understand us. I dont have a patner so I guess that makes it easier on me but I use to have one who saw me stuggle with rls and he educated hisself on it. I was grateful for that~~~~~~~~~Lyndarae
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