Explaining RLS to your family

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ViewsAskew
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Explaining RLS to your family

Postby ViewsAskew » Wed Jun 04, 2008 9:03 pm

For those of us whose families have RLS, there isn't much explaining to do. If no one else has it, though, what do you do? How do you explain something that they can't possible know what it feels like to have?

I thought it might be an interesting thread if we each shared what we've done that worked well. How did we say it? What did we say? When did we tell them? How did we deal with any negative remarks?

Maybe someone has a story of how he or she turned a disbeliever into a believer.

Whatever you have done, sharing it with others may help them be successful when they have to do the same thing.
Ann - Take what you need, leave the rest

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Postby ViewsAskew » Wed Jun 04, 2008 9:19 pm

In some ways, I haven't had trouble with this. I actually find it amazing that I haven't.

In my family, my mom, grandma, brother, uncle, sister, and another uncle all have RLS to one degree or another. I never had anyone doubt me or question what it's like....at least not in my family.

But, even outside my family, anytime I tell someone (with the exception of one person), they get it. They don't get the feeling, but the get the result - that I'm tired, I don't sleep well, it affects all aspect of my life, etc. Sometimes I think I must have the most amazing set of friends; in reality, they are! They are compassionate and know how to empathize.

So, when I met my MIL and she didn't get it, I was totally thrown. The first time she asked, I gave my general spiel. "It's a feeling in my muscles that I have no power over - like someone is inside me and doing things to me - it's the equivalent of being tickled and not being able to stop it. No, it doesn't feel like tickling, but it's the same out of control feelint. It's more like the feeling of sticking your tongue on a battery."

She nodded and we changed the subject. The next time I saw her she said, "I don't really understand this RLS thing. Why can't you just go to sleep?" I tried again. I explained again. I offered some of the same analogies. Again, she nodded and we started talking about something else.

The next time I saw her she said,"I know you've explained it to me, but I still don't understand what it is or why it bothers you."

I was dumbfounded. I really thought I'd explained it well. Besides, everyone else in my life "got it" why didn't she?

Over the next few months, we talked about it at least six more times. I am not sure that any one thing I said made the difference; if so, I don't know what it was.

During this time, after my initial annoyance that she didn't get it, I had to work hard to think about how I was communicating to her. I tried to use as many analogies as I could. I tried to pick analogies that meant something to her - like what annoyed her and caused her problems, on the occasional insomnia she has, etc. By relating to the occasional insomnia she has, I was able to early on gain her empathy regarding being tired. It was the why I couldn't sleep part that she didn't get and we had so much difficulty with. My strategy was simply to keep trying to relate it to things in her life. The one that may have helped the most was her diabetic neuropathy. She doesn't have it often, but that was important - she could apply that feeling to RLS.

It was terribly hard to keep my cool at times. I would get so frustrated with her and I'd have to remember that communication is so imperfect. Just because something has meaning to me and makes sense in my brain doesn't mean that anyone else understands it. When I remembered to look at our exchange as a challenge rather than as a problem, it was easier. I had to think, "Hmmm, what could I say now? How can I help her to understand? If I didn't have this, what would I think?" etc.
Ann - Take what you need, leave the rest



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Postby ctravel12 » Thu Jun 05, 2008 2:44 am

Good thread Ann. I still say and will continue to say it until they walk in our shoes for a minute, hour or even a day they will never understand.

I still now and then have bouts with rls and hubby just says "oh your legs are bothering you again?" I know he has empathy but until they actually go through no matter how many times you explain they just do not get it.

Sleep depreviation is miserable and know that other people do have it but when it is combined with rls there is a big difference.

Thanks for starting this as I am sure you will get alot of response.
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Postby Aiken » Thu Jun 05, 2008 3:00 am

I don't qualify too well, as my wife had a bout with it earlier in life. However, I haven't had too much difficulty explaining it to more distant relatives. The trick is to figure out something that the other person has felt that would be equally annoying, or even painful, if experienced chronically like RLS. A lot of people get the 9V-battery-touched-to-the-tongue reference. Others need something else. If they've ever had growing pains, that's a good point of reference.

Actually, what's amazing is that maybe half of the people I've mentioned it to (family or otherwise) have also said they experienced it for a while at some point, and then it went away. I guess if iron deficiency can bring it on, it shouldn't be too surprising that more people have experienced it briefly than are accounted for in the 10-12% number we count our chronic selves in.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Postby ViewsAskew » Thu Jun 05, 2008 5:24 am

Aiken, that seems to be the golden key - finding a referent to their pain, problems, concerns - isn't it?

I wonder if anyone has had success using a different strategy?
Ann - Take what you need, leave the rest



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Postby SquirmingSusan » Thu Jun 05, 2008 10:18 am

Well Ann, you've got to give your MIL credit for continuing to try to understand. It sounds like she really does want to understand, anyway.

I don't seem to have much trouble in getting others to understand what the RLS is like. It seems like most people have felt the "creepy-crawlies" at one time or another. The same thing with trying to explain my chronic vertigo. I'd just ask them if they'd ever been so drunk that the room was spinning. And then tell them that I had that all the time, except that it spun faster and for no reason.

The only thing that people really don't seem to get is this circadian rhythm thing. They just don't get it that I CAN'T sleep from say 10pm to 6am, that it just doesn't work that way. And the counterpart to that is that I CAN'T stay awake in the morning. No amount of medications can knock me out before two or 3 am, and no amount of drugs can keep me awake in the daytime until after about 2pm. And my sleep schedule keeps getting more off all the time. It's slowly moving around on its own.

That's the problem that makes people think I'm lazy or have some kind of character flaw. Trying to get people to understand that having a major circadian rhythm disorder is NOT a character flaw is really an issue. I explain it to my customers and I get the feeling that they just don't believe it. And they don't get it that I can get the work done. I can run my embroidery machines all night long and get the work done, but it's not the same as getting it done during "normal" hours.

And then there's my kids who get on my case about sleeping all day. They're 18 and 16 and don't have jobs, and when I encourage them in that direction all I hear about is how "mom, but all you do is sleep all day." Like that has anything to do with them and their job hunts.

I told my son once when he was comparing himself to me and saying that he shouldn't have to do more than I do - I told him not to compare himself to a 51-year-old woman with chronic fatigue syndrome. My illness doesn't work as an excuse for his behavior. Sheesh.

Well, tomorrow is the last day of school for him this Spring. I've told both kids that there will be "no job, no internet" happening for them once classes are out. It's time to throw the birdies out of the nest and make them fly a bit.
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Postby ViewsAskew » Thu Jun 05, 2008 7:44 pm

Yes, I fight that battle at home a lot. DH and I have a business together. He just can't wrap himself around the fact that I work from noon until 8....or 2 until 10....or even 4 until 12 - or whatever combo works for me that day. He wants us to work at the same time and keeps saying he doesn't know how it can work.

A couple of days ago I was up until 8 AM before I could get to sleep. Part RLS, mostly circadian rhythm issues (for me, it gets a bit later each night - 2 , then 4, then 6, etc.). The last two weeks I've had RLS frequently and haven't slept before 4 or 5 AM.

So, after the night when I went to bed at 8 AM he said, "Was it the RLS or did you just stay up?"

This implication: if it was RLS, it's OK by me but if you "just" decided to stay up, then that is NOT OK and you should've come to bed.

So far, I've just dealt with this one and not let it get to me. But as the business grows, it could become a problem and I'll have to figure out how to explain it in a way he can get.
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Postby KBear » Thu Jun 05, 2008 9:27 pm

My husband has a different sort of sleep disorder, he wakes up early and can't get back to sleep (but he falls asleep like a baby). I used to think that he had it made but I have come to understand when he wakes up at 4 AM he is still tired and would like to sleep a couple more hours but he can't. I can't fall asleep until well after midnight (without drugs) and if I lay still for too long without falling asleep the RLS kicks in. So neither one of us gets a full nights sleep. Fortuantely we don't bother each too much.

My sister has RLS too so I can talk with her but I don't really talk about it with anyone else. I have occasionally discussed it with my parents; my dad has RLS my mom has late circadian rhythms and stays up late/sleeps late now that she is retired.

I would prefer to sleep when it's dark and rise with the sun but my rhythms are getting further and further out of wack again and lately I'm tossing until 2:00 AM. :? I could write a friggin book on sleep hygiene but it seems like it shouldn't be so much work to get a good nights sleep.
Kathy

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Postby SquirmingSusan » Fri Jun 06, 2008 5:47 am

Ann, have you ever suggested to your DH that he adjust his sleep schedule to yours? :wink:
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Postby ViewsAskew » Fri Jun 06, 2008 7:19 pm

He's actually tried it, Susan. The real problem is that he oh-so-wants to be "normal" - the way he used to be before he semi-retired and met me, lol. He owned a business, got up at 7 AM, went to work, worked until 8 or 9 PM, drove home, slept and got up and did it again.

That was when he was thirty and hungry for success.

Now? He like to write music at 2 AM, go for walks at 10 PM, eat dinner at 11 PM, get up at noon, create videos, fly model airplanes, play in photoshop, go for bike rides along the lake, etc. None of that is related to a schedule or work. Well, it's work, just not job work, if you get my drift.

Now that he's decided to join the rest of us working stiffs again, he can't reconcile everything. He's older, he has chronic health problems, and has the many similar problems we do here - he's often tired, foggy, can't function, isn't rested so stays in bed longer, etc. While he doesn't believe it, he's affected so much that he's been diagnosed with fibro, which is pretty rare in guys.

So, what he's trying to do is get both of us to pretend we are people we aren't. That we can and will marshall the energy to get ourselves up at 8 AM and start working. It's NOT going to happen. He's just going to have to adjust to finding a new way to work. One of the reasons I wanted to start a business together is so together we could come up with a 50 or 60 hours work week, lol. That sounds perfect to me in my foggy brain - then the days I'm not foggy I can be on fire and the days I am foggy, he can be on fire or we can both just slide. He's just having a hard time accepting what is....rather than wanting what was.
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Postby HeatherB » Sat Aug 09, 2008 3:46 am

When I explain what my RLS feels like I tell to me it feels like a combination of when you cut the circulation off to your leg and it starts coming back and the feeling when you hit your funny bone together in your leg muscles. It is deep in my legs, close to the bone that I feel it. I think for the most part people understand it.
There is the kicking of my legs too. I just tell them all of the sudden my leg will just kick out of no where. That they get.

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Postby Aiken » Sun Aug 10, 2008 1:41 am

That's a good one, Heather. I often think I'm feeling that way when it happens, but I never remember to explain it to people that way.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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Postby snowbound » Sun Aug 24, 2008 12:45 am

No one seems to understand in my family. There is no history of RLS with any of them. Not one of my relatives have ever even heard of it. My mother tries and is truly concerned but doesn't seem to understand the symptoms at all. I don't even bother to bring it up anymore and am rarely asked about it anyway so not much point.

Iam used to going through it alone as that's how it is.



snowbound
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Postby ctravel12 » Sun Aug 24, 2008 3:00 am

Oh Snowbound I am so sorry to hear that. Is there a support group where you live that you could go to? You may even want to take a family member there so they could hear what other people go through too.

You take care and have a good weekend.
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Postby Hos » Sun Aug 24, 2008 4:42 am

That is a good way of putting it Heather. My family tries to relate and are as empathetic as can be expected. Since there's so much exposure in the media now I'd go as far to say that if someone does not believe or care about this serious issue in our lives then how much do they really care about you?

Even though any "syndrome" is hard to understand (by definition) no one should have to go through RLS alone unless it's by choice. Between family, friends, text chat, voice chat, forums, and support groups, I hope everyone reading this has some type of connection to empathetic support. If you don't... private message me and you will at least have 1 with ya! :)


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