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?
beth
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Postby beth » Thu Oct 16, 2008 8:32 pm

Hi
I to have purchased every book.I went through a similar situation with the kids when I was diagnosed with cancer. I did surgury and radiation and half of the chemo but I was sosick I stopped.To me it was quality not quantity of life and here I am 10 years later. I guess it is manly the thought of opiates and its funny to think its usually the parent afraid of the kids using drugs.I am at a bad place at this point with the lack of slep and non of the meds working I just don't want to be bugged. I love my kids dearly but they just have no idea what itis like to struggle through each day. Beth

ViewsAskew
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Postby ViewsAskew » Thu Oct 16, 2008 8:37 pm

I think that is the hardest part...getting someone to realize how much of a struggle each day is. Some people seem to just get it. I have some friends that never, ever questioned me. As soon as I explained, they totally got it. Others? It's taken forever and I still don't think they really understand.

In the past, I have had to say, "I respect you and your knowledge and your concern for me. I need you to respect that I am doing what is best for me so that I can have a happy life, with a good quality of life. Will you support me?"

I can completely relate to not wanting to be bugged about it!
Ann - Take what you need, leave the rest

Managing Your RLS

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beth
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Postby beth » Thu Oct 16, 2008 8:56 pm

Thanks for the valuable words!! I think we have are days we can handle things and days that you can't. I wish they could just find a med that worked for at least more than 5 days so I didn't feel like a freak show.
Beth

ViewsAskew
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Postby ViewsAskew » Fri Oct 17, 2008 2:40 am

That would be nice, wouldn't it???
Ann - Take what you need, leave the rest



Managing Your RLS



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DirtyPurdy
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Postby DirtyPurdy » Mon Mar 09, 2009 12:19 am

The only person that I think REMOTLY gets it is my husband and my brother, because they are the only two people that have seen a full blown "epsoide" where I could not at all sit still and was filpping out and kickin and yelling. When I was pregnant once my brother had to sit on the edge of my bed and rub my legs for like an hour, and I kicked him on accident several times. My husband belives in the BAD episodes (I guess I've kicked him a few times in my sleep - plus he sees me struggle when we're trying to relax) , I just don't think he really understands the "all-day-every-day" stuff that's been getting worse and worse over the last few months. The rest of my family doesn't really SEE it, they just know what I attempt to tell them. To me, it's like my legs are angry - that's the best way I can describe. The last few days in particular have been really bad, which is what pushed me to find this site.

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Postby Polar Bear » Mon Mar 09, 2009 9:17 am

Hello DP

I am glad you found us, and can totally relate to what you say. Angry Legs is a good description.

It is difficult to have someone understand what it means when you try to explain, feeling exhausted, tired, aching all over and just needing to get some sleep/rest, but you just gotta walk, keep doing laps around the room, or more chores. You are walking cos the angry legs (and my arms recently) wont let you sit still, and yet your body is so achy and tired, it just wants to lie down. So, its discomfort if you lie down, and discomfort if you walk about.

My family also are good, if they don't fully understand what it feels like, at least they understand that I suffer and are accepting when I go walkabout around the furniture.

What bliss it would be to lie down/sit down.... and be at peace, calm.....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Postby ViewsAskew » Mon Mar 09, 2009 10:15 am

This doesn't always work...I still can't get my MIL to get it....but more often than not, if I can find out what things people dislike and have experienced - being tickled, sticking tongue on 9 volt battery, poison ivy - then I ask them to imagine that inside their body, where they cannot stop it except by moving around. That moving is like the calamine lotion or taking the battery off the tongue.

I think each of us empathizes in different ways, so to get them to understand, we have to find the key that unlocks their understanding. It's hard to know what that key is. As I said, I still haven't been able to get MIL to get it. About a year ago, I thought she got it. Then a month or so ago she said, "I know it keeps you up, but I still don't understand it."

Sigh.
Last edited by ViewsAskew on Mon Mar 09, 2009 1:42 pm, edited 1 time in total.
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.

DirtyPurdy
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Postby DirtyPurdy » Mon Mar 09, 2009 12:26 pm

ViewsAskew wrote:...find out what things people dislike and have experienced - being tickled, sticking tongue on 9 volt battery, poison ivy - then I ask them to imagine that inside their body, where they cannot stop it expect by moving around. That moving is like the calamine lotion or taking the battery off the tongue.


OMG that's PERFECT! That IS EXACTALLY WHAT IT FEELS LIKE!!! WHEW!!!

Polar Bear
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Postby Polar Bear » Mon Mar 09, 2009 1:58 pm

I explained it to my husband using his horror of anyone touching his feet!! He just cannot bear it. So I said, just imagine your feet are secured, you cannot move them no matter what you do, and someone is touching/brushing your feet for hours at a time, every day of your life, and there is absolutely nothing that you can do about it.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Postby ViewsAskew » Mon Mar 09, 2009 2:33 pm

Great example. Most people have something they truly despise being done to them or have experienced something painful that they can relate to not being able to "turn it off."
Ann - Take what you need, leave the rest



Managing Your RLS



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Scarlett46
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Postby Scarlett46 » Thu Mar 12, 2009 2:44 pm

UGH! My DH thinks I'm a hypochondriac!
He has concerns about my (lack of) memory, and mood - verging on depression, etc... But he sees no reason for a sleep study (which my doctor has been wanting for a year, but we can't afford).

He says I read too much on the internet and self diagnose too often.
Yes... I read on the internet. I suspect a few different possible diagnosis, but not all of them. I want to talk to the doctor about HIM ruling out or diagnosing these possibilities. He can't/won't because he's not a sleep specialist, and wants me to have a sleep study done. DH thinks I just need to ask the doc for an antidepressant... Well, although that may turn out to be part of the solution, it doesn't address the root cause at all.

DH just doesn't understand what could come of a sleep study. He thinks I don't have anything 'that bad'... He hasn't read anything about it, so has no idea of what they even do or look for. It's not about "well, you talk in your sleep, so that's the cause of all your problems"...

It's about SOMETHING is causing me to not sleep well. In turn, I am sleepy all day long. I have jumpy, crazy legs. I can't remember s**t, which cuts my self esteem, which makes me depressed, which makes me unbearable to be around!

Sorry for venting... but when he just doesn't get it, I don't know what to say or do. He makes it sound like I have no credibility because I'm crazy or something...
"After all... Tomorrow is another day!"

rlsgirl
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Postby rlsgirl » Mon May 04, 2009 7:42 pm

Scarlett46 wrote:You know... it seems like lately (and I've actually just very recently mustered the gumption to mention it to anyone outside of my family), whenever I mention that I have RLS, someone says "Oh, I have that"... Which should make me feel better, right? But no, because they all seem to be fully functioning people. They don't seem to be suffering. So it totally minimizes what I'm feeling.

I really don't know how to describe the sensations - I guess the touching your tongue to a 9v battery would be the best description... only much, much worse and more widespread. And then there's the "muscle and bone" aches. But really, what I try to focus on more when explaining it to others is how it affects my life. I literally have to sneak off to the restroom during the work day - just to close my eyes for a few minutes (although I do have this terrible fear that I will actually fall asleep and end up being in there for hours...).


:lol: I don't mean to laugh but I have a very funny story to tell you. Back in August of 2008 I went into the bathroom of my work, sat on the toilet and closed my eyes....felt so good that I ended up putting hand towels (paper towels) down on the floor to lay on them and let my body rest for a minute. One minute turned into 2 hours. I fell out....next think I know the fire dept was breaking down the door because they (my co workers) had been banging on the door and I was so out I did not hear it. LOL Okay so I thought that was bad. I will normally not eat lunch so that I can go out to my car and take an hour nap. Well I usually set my alarm on my cell phone to go off when my break is over! Not on October 11th. I went out at noon fell asleep at about 12:10 my phone went off and I did not hear it, no one knew what I was driving or where I was parked in the parking garage so when I did not come back to work they did not know what happened to me, 5:00 came and went and everyone around me went home for the night, my family realized that I was not coming home around 7pm and started to call my cell phone over and over again, I was so knocked out I did not hear it ring, my family called the police and I was found in my car knocked out about 3am. The police had to use one of those fog horn things to wake me up not even the siren woke me. People do not realize what kind of a toll this condition takes on your body unless they have it. When you go for weeks and weeks with only 2-4 hours of sleep every night and only a slight cat nap in the bathroom at work if your lucky at some point your body WILL shut down and go to sleep! I know mine did!

Polar Bear
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Postby Polar Bear » Mon May 04, 2009 8:54 pm

rls girl, those are two funny stories, and funny in retrospect.

And yet..... , maybe not so funny really.... Its sad that you were so exhausted that this could happen to you. - twice. How did you feel when you were finally awakened in the car park. And how did your family feel.

Yes, its funny :lol: , but scary :shock:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rlsgirl
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Postby rlsgirl » Mon May 04, 2009 9:29 pm

Polar Bear wrote:rls girl, those are two funny stories, and funny in retrospect.

And yet..... , maybe not so funny really.... Its sad that you were so exhausted that this could happen to you. - twice. How did you feel when you were finally awakened in the car park. And how did your family feel.

Yes, its funny :lol: , but scary :shock:


It cracks me up everytime I think about it. I actually felt rested and was somewhat pissed that they woke me up both times. LOL my husband was beside himself with the parked car deal. But at the same time said 'I'm glad that you got a chance to get some sleep even though you scaired the hell out of me" LOL Now if i should ever get like that again I will call him to let him know I'm taking a nap and where. LOL It has always been strange to me that mine kicks into high gear around 1-2am and then when the sun starts to come up somewhere between 6and7am i fall asleep because it lets up on me. Does anyone else experience this?

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SquirmingSusan
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Postby SquirmingSusan » Mon May 04, 2009 10:18 pm

OMG, RLSgirl. That's scary. And to think that you're driving around being so tired all the time, too. It's the driving that scares me, too. My daughter is always waking me up in the morning and wanting a ride to her classes, and I'm so sleepy. (Besides, she's 19 and needs to get her drivers license, but that's a whole 'nother topic.) It is pretty funny though. I'm sure glad you're getting good medication nowadays.
Susan, squirming Image

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