Dealing with tuff love and people with RLS

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
Betty/WV
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Location: West Virginia, Wild and Wonderful

Re: Dealing with tuff love and people with RLS

Postby Betty/WV » Mon May 28, 2012 11:31 am

To rthom: Your post was so very touching and kind. Regarding our cognitive problems, sometimes I don't think I realize how bad mine are. I guess I'm just used to being the way I am. But thank you so much, even if its hard to express how you feel, you made my day. Crazy isn't it, that we feel so close to each other when we have never laid eyes on each other. Its just through our words, when I first realized there were other people like me. That felt like me, that understood me, it was such a comforting thing.
I have my bad days and good days and then there are the days that are beyond bad.
Thanks for your kind thoughts and I hope you are having one of those good days and a lot more of them.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Re: Dealing with tuff love and people with RLS

Postby Polar Bear » Mon May 28, 2012 6:17 pm

I think the closeness comes from true understanding - knowing exactly what it feels like to be suffering from WED
and being able to share.

No matter how much we love our loved ones they simply cannot understand, it is impossible for them to know what it feels like.
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

ViewsAskew
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Re: Dealing with tuff love and people with RLS

Postby ViewsAskew » Tue May 29, 2012 3:17 am

Polar Bear wrote:I think the closeness comes from true understanding - knowing exactly what it feels like to be suffering from WED
and being able to share.

No matter how much we love our loved ones they simply cannot understand, it is impossible for them to know what it feels like.


PB, even I feel a bit baffled by how people experience painful WED. Mine is the electrical kind and it doesn't hurt or pull. It feel like my muscles are a tongue on a 9 volt battery! I often wonder what that kind of WED feels like. I honestly don't have. I can empathize with the need to move, the lack of sleep, and the rest of it - but not how it feels.
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.

badnights
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Location: Northwest Territories, Canada

Re: Dealing with tuff love and people with RLS

Postby badnights » Tue May 29, 2012 5:46 am

But you understand the anguish, the sleep deprivation, the loss of quality of life, the sense of alienation, the reduced functionality; you don't have to understand the exact sensation to know that it's abnormal and life altering.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Dealing with tuff love and people with RLS

Postby ViewsAskew » Tue May 29, 2012 9:34 pm

badnights wrote:But you understand the anguish, the sleep deprivation, the loss of quality of life, the sense of alienation, the reduced functionality; you don't have to understand the exact sensation to know that it's abnormal and life altering.



Indeed - but I understand that about diabetes, lupus, any autoimmune disease, any chronic disorder, etc. I just can't empathize with how it feels in the body. Many people get hung up on the "how it feels" part and forget the impact part. If they can't know how it feels, they can't extrapolate how it effects a person. Even is you ask how it felt during a time they were sleep deprived, all they can say is, well, don't stay up!
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.

badnights
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Re: Dealing with tuff love and people with RLS

Postby badnights » Wed May 30, 2012 5:54 am

Even is you ask how it felt during a time they were sleep deprived, all they can say is, well, don't stay up!
People sure can suk.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

rthom
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Re: Dealing with tuff love and people with RLS

Postby rthom » Tue Feb 19, 2013 9:15 am

[/quote]Indeed - but I understand that about diabetes, lupus, any autoimmune disease, any chronic disorder, etc. I just can't empathize with how it feels in the body. Many people get hung up on the "how it feels" part and forget the impact part. If they can't know how it feels, they can't extrapolate how it effects a person. Even is you ask how it felt during a time they were sleep deprived, all they can say is, well, don't stay up![/quote]

Great point about not understanding the impact part--they rarely know the follow-up stuff. Maybe they have pieces of information that are just too small?

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Dealing with tuff love and people with RLS

Postby Betty/WV » Tue Feb 19, 2013 10:41 am

What would we do without this site.?? I am 76 and so tired of dealing with this "monster" WED/RLS. For so many years I didn't even have a name for what ailed me. I find myself shutting myself off from everyone and everything. No one, friends or family, really understand what is going on with me. One friend keeps tellingme all these solutions to WED/RLS, soap under the sheet, this herb or that herb. One time I just turned my back and walked away from her. I have been to so many doctors that I can't count and tried so many medicines. I am now n Mirapex and gained so much weight. Now I have a weight p roblem that gives me one more thing to make me want to withdraw from everything and everyone. It has helped the WED/RLS but added other problems, the weight, the insomnia, (insomnia is a side affect of Mirapex, so is weight gain). For over 40 years I have dealt with this, and I don't even mention my problem to people anymore. They just look at you, with this disbelieving look. I always think, if I told them I had cancer, bad heart, brain tumor, they would understand that. In some ways WED/RLS is worse. I'm venting once more, but so thankful that I have somewhere to go and vent. And to know you all understand is so helpful. I wish you all peace and a good nights sleep.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Dealing with tuff love and people with RLS

Postby rthom » Tue Feb 19, 2013 10:58 am

Ah Betty, I'm so sorry tonight is so bad for you. I hope you can find at least a little inner peace and maybe even some sleep.
I hear you about the medication side effects, it's exhausting dealing with them, as if the lack of sleep and recurrent muscle movements arn't tiring enough--the stress and physical stresses of the side effects really make it hard.
Keep touching base here though--your contact does help others---tonight I was really having a hard time and wished someone would come on--helps to have a distraction, and I really like to hear from you on here. You are a special person--the way you care for others and your husband is coming accross on here as a warm feeling (don't know if that makes sense--it's supposed to be a compliment). Thanks for sharing here--truely. :wink:

Polar Bear
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Re: Dealing with tuff love and people with RLS

Postby Polar Bear » Tue Feb 19, 2013 10:54 pm

Yes, thanks Betty, and thanks everyone for sharing.

Betty's post just brought to mind that some time ago I found that the easiest thing to say was that I had a neurological sleep/movement disorder.
Now... that could mean just about anything within a broad spectrum but it kind of stopped folks in their tracks because they didn't know what it meant. Well, they knew what the actual words mean, but not what the disorder was. And it sounded so 'medical' that they just let it go at that. It saved me from the """ Oh, I get that""" or "" the bar of soap""" or """just relax"" However, I have to say ... in doing this, I felt a bit disloyal to our RLS/WED history base.
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

ViewsAskew
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Re: Dealing with tuff love and people with RLS

Postby ViewsAskew » Wed Feb 20, 2013 3:48 am

Polar Bear wrote:Yes, thanks Betty, and thanks everyone for sharing.

Betty's post just brought to mind that some time ago I found that the easiest thing to say was that I had a neurological sleep/movement disorder.
Now... that could mean just about anything within a broad spectrum but it kind of stopped folks in their tracks because they didn't know what it meant. Well, they knew what the actual words mean, but not what the disorder was. And it sounded so 'medical' that they just let it go at that. It saved me from the """ Oh, I get that""" or "" the bar of soap""" or """just relax"" However, I have to say ... in doing this, I felt a bit disloyal to our RLS/WED history base.


I do the same - i never say I have RLS. I always say I have two movement disorders or a neurological condition. The vast majority of people don't pry after that. I can really only recall one person who did. I went on and explained, but am perfectly happy not!
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.

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Re: Dealing with tuff love and people with RLS

Postby doety » Wed Feb 20, 2013 3:24 pm

I do the same thing. "I have a neurological thing....it's called Restless Legs Syndrome." And you're right, people usually accept that and go on. (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.)

My daughter finally admitted she has it. She said her legs "twitch" at night and she has to get up. She has a hard time going to sleep (probably fear more than anything) and wakes up every hour. This absolutely breaks my heart. She's starting earlier than I did, and a doctor once told me that if she got it, it would be worse than mine. Ann, I sent her part of that list that you composed about non-pharmaceutical things you can do (thank you again). Marijuana helped me for a few years -- but I don't think she'll try that. I especially told her about "attending," and maybe she can come up with something. C'mon scientists.....come to our rescue.

rthom
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Re: Dealing with tuff love and people with RLS

Postby rthom » Wed Feb 20, 2013 3:42 pm

Doety
Why did the dr say she would have it worse than u?
Seems odd, anyone know anything about this?

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

Re: Dealing with tuff love and people with RLS

Postby doety » Wed Feb 20, 2013 4:38 pm

I didn't ask him, wish I had. Certainly didn't tell her that.
She's watched me for so long, she must be afraid of it and that fear may intensity what's going on. Once, when she was on a plane with me and I was going nuts, she said "I'm not ever flying with you again. I thought you were going to take out the plane." She just found out last year that her father has it, although not very bad.

rthom
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Joined: Sat Dec 31, 2011 3:03 am

Re: Dealing with tuff love and people with RLS

Postby rthom » Wed Feb 20, 2013 4:58 pm

Maybe that's where he got the idea--but still, to assume things he has no knowledge of doesn't sound good, or helpful in anyway :think: , But, what do I know--lol.


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