Spouses and others don't "get" what RLS is like...

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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jan3213
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Postby jan3213 » Sat Oct 30, 2004 5:45 pm

Ann, it's Jan

You know, I agree with everything you said, especially when you said we see it differently when we feel better. Ha! I'm glad you got 8 hours of sleep. Believe me, I'm NOT trying to win any no sleep contests, but I haven't slept more than 4 hours in probably 2 months, but with changes in meds as of Thurs. I look forward to that chanaging, too.

I do think, as I said in my post, that it's sad for the spouse, too. I THINK I said that. LOL Anyway, I meant to say it. Both people are effected because I won't be the same me my husband thought he married. WE won't have the same future--but, it could be worse--it's just going to be different. We'll have to make a few adjustments. I meant it when I said that I don't think men "bend" as easily as women. I think that's why women are Mommies. Ha! He'll come around, I'm sure of it! He's a great guy--I think he's in denial a little bit. And, Porkgrind3, that may be where you husband is, too. Sometimes, illness of a loved one is harder on the family than it is on the person who is ill. That may seem like an odd thing, but have you ever seen a family sitting with a loved one in a hospital room? Or a nursing home? Ann, your post was excellent and very thought provoking! As a friend of mine once said (this is SO profound): There are two sides to every pancake!!! And, you are absolutely right, sometimes we just need to vent!

Take care EVERYONE!!!!! And, Porkgrind3, the offer still stands!!

Jan
No one is alone who had friends.

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lyndarae
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Postby lyndarae » Thu Nov 04, 2004 8:18 am

I wish I would have had this forum 10 years ago and I might still be married. I didnt even know what was going on let alone my husband. I say talk about RLS all you can to help your partner understand. RLS robbed me of a good marriage I hope that wont happen to any of you!!! Lyndarae

debt_59
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Postby debt_59 » Fri Dec 22, 2006 7:13 pm

Hi All,
I so understand, I am with you all. So much of what I go through each and every day and through out the years I see people here writing the same thing. Each and everyone of us have went through the same things or situations almost the same. Why some of us have pain and the creepy crawly legs, others have only the pain, and others have just the creepy crawly jumpy legs! And so on... My sis who is 6 years younger than I has the same thing. We often call one another and joke about getting our legs cut off becuase they are so irrateing! One day I had to laugh at her as she was telling me of her night before situation with RLS. She sai sister I think we would be better off getting our legs cut off!! I laughed and said Sis then our stumps would jump, I do not think we will ever be rid of this leg thing. It is with us for life! This is a joke between sisters, we would never get our legs cut off, but sometimes there has to be a littl humor in things and my sis gets so depressed, she also suffers from arthrities in her knees and legs. she is only 40 so I have to try to cheer her up. But so much of the time the nights that are bad for her are the nights that are bad for me. I tell her she ought to call me so we can be up all night together. We have to try to cheer for one another and be there for one another here and at home.
When I read some of the posts I think here is another post that sounds so much like me. I feel so at home here and I know when I am having a bad day I can come here and see that others have it worse off than I do.
I am so glad to be a here

catsup
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Postby catsup » Wed Dec 27, 2006 9:16 pm

you know, i am beginning to get the definite impression that people with RLS tend to be intelligent, very kind, and very undeserving of such a torturous condition. you all express yourselves so well, and i get a lot from reading your posts.

i think the recent appearance of Requip ads on tv may be an enlightening factor for the general public. i can't imagine what sort of reaction the people around me would have had if they had not seem it on tv.

do you think it would help, when a spouse is not empathetic or understanding enough, to bring him/her to a doctor's appointment with you for "educational purposes?" i mean this is a disease that affects families. they struggle with loss of sleep when we are up and down all night and/or kicking around. and for many reasons it can challenge the closeness and smooth operation of a union. i think we should all drag 'em along with us the next time and see what happens!

My partner goes back and forth between trying to be understanding and getting pissed because i wake her up at night and don't get the chores done when having a bad bout of RLS. and she has a touch of it herself.(Geez, i pray she hers doesn't become flull bown - can you imagine two sleep deprived people trying to get along and run a household?!) (but then i would have someone to up with at night!)

one issue that really bothers me a lot is that i have my 90 yr old mother living next door. it has been very convenient in terms of my being able to assist her by driving her, etc. when i first got on Requip, i was afraid to drive because of the warning about it. and, when i have not slept for many nights in a row, i am no good to her at all. i am retired (from human services) so i don't have to worry about be responsible to a job, thank goodness. this part of the "disability" does worry me a lot.

ok i'm done blabbing. well, keep on writing about it. you are very strong people and this is helping me tremendously. Moll

becat
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Postby becat » Wed Dec 27, 2006 11:49 pm

n/a
Last edited by becat on Tue Jan 12, 2010 11:14 pm, edited 1 time in total.

doety
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Postby doety » Thu Dec 28, 2006 8:30 pm

It's like I have to steel myself everything I do this, but my resolution is always to tell someone about RLS if I need to. When I have to leave the table, the symphony, the movie, etc. About half the time, I get an unexpected answer (I have it, my best friend has it, etc.)

I was glad when I first saw those ads about RLS -- even tho Requip didn't work for me, at least, I thought, people will see it as real. Then Bill Maher said it was made-up and Rosie said it was made-up, and now I'm wondering if it's good at all. It also puts it in the category of "well, just take a pill and you'll be fine" and we all know that ain't happening.

I see that Mirapex has now been promoted to the same status as Requip. So we all have to be vigilent about the augmentation that can happen. With the help of people on these boards, I was able to finally recognize that while Mirapex had been useful for a while, it was now interfering with my entire life. It didn't rebound the say Sinemet did, but still, I had RLS during the day and still couldn't sleep. The more I took, the worse it got. Finally, I cut back, cut down and quit completely, while starting to use Methadone. My daytime RLS has stopped completely and I'm getting some rest at night. I was in the middle of it and couldn't see what was going on. We all have to help each other. So glad you're all here.

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ctravel12
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spouses and others just don't "get" what rls is li

Postby ctravel12 » Thu Dec 28, 2006 9:40 pm

Hey Doety It is good to see you back posting. Missed seeing you on the board.

I am so glad that your rls is doing so well and you are getting the much needed sleep that you need.

Please do keep in touch and let us know how you are doing.

I am doing fine now, but now want to give as much support to other people as when I was at my worst they were there for me. Now I want to be there for them. I am sure you remember the movie "Pay It Forward" well that is what I want to do.

Again, welcome back.
Charlene
Taking one day at a time

doety
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Postby doety » Thu Dec 28, 2006 10:28 pm

Thanks and I agree absolutely.
I think we all know that any pill or solution we find often loses its effectiveness after a while and you just have to keep trying.
I don't know why it's so hard to say "I have restless legs and this is what it does to me." I guess we feel silly, which is unfortunate.
And it's why we bond so quickly on these boards -- thank goodness we've found each other!
I do so appreciate people who are leaders on the board and stick around and are there, to explain over and over and over, what's going on and often options to those in need.
here's to a good new year to all of us and lots of much-needed sleep.

becat
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Postby becat » Fri Dec 29, 2006 3:16 am

Hi Ct, Hi Doety,
Amen, ditto, and I'm so glad to have this board too. Not only did it save my life once or twice, it's granted me some of the best people my heart was missing, even before I met them.
We are lucky and I have to say the "old timers" came before us all and how thankful I am they did. Your right, this is a path, not an easy one, but a walkable, doable one. Even if we have to educate, support, and lend a shoudler one post at a time.
Well worth the love I've gotten by far.
Much love to you both and never without the moon,
Lynne

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Rubyslipper
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Postby Rubyslipper » Sat Dec 30, 2006 2:50 pm

For the most part, hubby is very understanding about the RLS and fibro. After all, he's got a screwy immune disorder no one has heard of that put him on disability. Now there are some other health problems going on that just make matters worse for me and we can't figure out what it is. Mys sister has fibro but not RLS so we understand and support each other. All of this does have a point! LOL On Christmas Day after a wonderful dinner fixed by our mom (which we thanked her for many times) she proceeds to tell both my sister and me that we don't need our meds, that we're just "hooked" on them and if we got off them we would be just fine. Last week the doctor that I have trusted for so long said that if I would just lose weight, my fibro and RLS would go away. Needless to say, my sister and I were very hurt and upset that after all our explanations of what we had and what we had to do to survive our mother would attack us like that. We did stand up for ourselves and it was uncomfortable for awhile but she still doesn't understand. Dad feels the same way mom does but is too smart to say anything. So it isn't just our partners that can hurt us by not understanding. I guess I just thought mothers would stand beside you and believe in you. Sure was shot down on that one. It's easier to educate strangers than your own family. I am so thankful for this board and for the people here who do understand and support each other. At times its the only thing that keeps me sane! :twisted:
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

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ctravel12
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spouses and others don;t "get" what rls is like

Postby ctravel12 » Sat Dec 30, 2006 2:59 pm

Hi Rubyslipper. I just read your post and am so sorry what happened. I wish that I could take the hurt away.

I am glad that you have your sister and the group here to support you. We will always be here for you.

Unless someone walks in your shoes, they do not know what you are going through. I would not wish this on my worse enemy.

Take care my friend and hope that 2007 is a good year for you.
Charlene

Taking one day at a time

catsup
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Location: coastal Maine

Postby catsup » Sat Dec 30, 2006 4:39 pm

unfortunately, the holidays often bring out family discord. the stress of it all has something to do with it.

while your mom is entitled to her opinions, she sure has lousy timing. mother/daughter relationships are so powerful; they run deep. i am 58 and my mom is 90, and there are times when she can still push my buttons so well, and i end up feeling so wounded. i'm so sorry this happened to you. it sounds like she thinks you will be fine if you just pull yourself up by the bootstraps, and this is so wrong. my father used to think i played up my diabetes type 1 - he would scoff at my trips to the doc for what he thought were small issues. i think he had a lot of denial when it came to illness. maybe your parents are in denial. they certainly aren't educatable!

i'm so glad that this forum is here and that you came here and expressed yourself so well. your parents aren't coping well, but you sure are! you are doing the best you can to recover from your mom's ridiculous lecture.

keep taking care of number one! moll

doety
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Postby doety » Sat Dec 30, 2006 4:40 pm

I'm sorry too. You always think that if there's anyone in the world you can count on for support, it's your mom. But really, it has to be ourselves, I guess. My daughter has RLS, inherited from me of course. It was awful for her during pregnancy, she didn't sleep at all, but she's fine now, and only 36. I know what's coming in menopause, if she folows my pattern, but don't talk about that. Two years ago, we were on a plane and I had a major melt down -- the plane was tiny, and even though I was standing up and had taken 2 Mirapex and 1 Vicodin, I was in that place you all know about where I could not calm down, I felt trapped and I thought I would lose my mind. She looked at me and said: "You know it's all in your head!" Haha....Actually I couldn't be too mad at her because she has no idea what's coming and I just hope there are major steps made before she has to face it.

ViewsAskew
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Postby ViewsAskew » Sat Dec 30, 2006 6:48 pm

It IS all in our heads. . .our substantia nigras :wink:

My toast to the New Year. . .may we all find a way to help those around us to find compassion for our RLS plight.

I can think of many other toasts that are important, too, but this one? It sure would make things easier to not have to fight this fight on top of the lack of sleep, fatigue, exhaustion, anxiety, depression, etc.
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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Walking After Midnight
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Postby Walking After Midnight » Sat Dec 30, 2006 7:15 pm

You got it sister...I'll raise my glass to that one.


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