Intimacy. . . or the lack of it

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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Intimacy. . . or the lack of it

Postby ViewsAskew » Wed Feb 22, 2006 8:59 am

It's 2:45 AM. I'm at the computer and DH is sleeping. Each night he asks me to come to bed. Sometimes I do, sometimes I don't. Tonight I have the "I don't want to go to bed" issue. This, I think, is a learned response from years of having pretty poor results! Bed just isn't a happy place. But, I digress :shock:

I am trying to do other things to ensure we don't lose too much intimacy. Some nights I do go up; if I can't sleep, I come back down after he falls asleep. He is also trying. Some mornings, when he hears me finally stirring, he comes up and snuggles with me for awhile. We are so lucky to both work at home. I like the snuggling, but he really is the ne who misses it most. I know that I have to guard this carefully or we would lose one of our most important ways of physical contact.

I hope it's enough. Sometimes I worry - the effects of RLS on intimacy can be devastating. I'm feeling that I'm letting him down too frequently lately. That must be my wake up call to start working harder on this.

Ann
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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jan3213
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Postby jan3213 » Wed Feb 22, 2006 2:24 pm

I know what you mean---last night was one of "those" nights for me, too. I hate leaving our bed. But, about 1:30, after feeling like I'd been beaten up (by the bed, not by him), I had to give up and come downstairs to sleep in a recliner. :( I hate not waking up with him in the mornings and I hate having our bed mean something other than what it should mean. I don't think I'll ever get used to that. Oh, it could be much worse--anything could be worse. But, I know what you mean. There's much more to intimacy than sex--it's the holding, cuddling, being sleepy together, seeing my hubby first in the morning. I know he misses it, too. But, we'll be married 30 years in April. It just puts a different spin on our relationship. I don't think we'll get dizzy and "fall off". :wink:

Hang in there, Ann

Jannie
No one is alone who had friends.

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Postby becat » Wed Feb 22, 2006 9:48 pm

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lyndarae guest

Postby lyndarae guest » Thu Feb 23, 2006 3:30 am

ONE of the biggest reasons I lost my true love was due to rls.........it was before I even knew what was going on. I just knew I could not stand to be touched by him at all anytime he would touch me I would almost fly out of the bed. But the worse part was I would chugg a couple beers hoping it would help me get to sleep before he came to bed cause the minute he laided his head on the pillow he was out and snoring like a baby.....this would make me so angry usually I had just fallen a sleep when he would get in the bed. It was never ending and he finally ended up sleeping on the couch for many years and we didnt even know I had rls. Needless to say it got worse..........................

I have just got into a realationship after being single for a very long time he is in program and we really have fallen for each other. Well of course I had to tell him about my disease of rls. And how I would not be able to sleep with him and that it is progessive. Thank GOD he is a good man and tries to understand. I have been staying the weekends with him he is 100 miles away and in school with a one bed room apartment and no couch.......Hmmmmm how is that going to work. Each week I bring my air mattress and we set it up in his frontroom. He calls it my BYOB bring your own bed hehehehehe. We go to bed together and I can usually fall asleep (meds) but not for long. So after I lay there for an hour and not want to get out of the warm bed and his breathing and the excitment of the newness of it all, I get my pillows and try to leave the bed without waking him. Last weekend he actually kissed me as I got up and said good night to me..................... It broke my heart and I went out and cried for a long time just knowing that this wonderful man would have to spend the rest of his life with this kind of sleep partner was too much for me. He has seen me in so much pain I could hardly walk into the house. I dont know if it is just me feeling guilty or if it is starting to change a new romance in its 2 month. This is embarassing for me and so painful I just dont know what to do anymore. So this is going to be our first weekend apart since we met. I am missing him already but we are both students and both broke,so life on lifes terms. I am just happy that he has gotten to know me for who I am and not this disease. But will I loose him because of it????? There is a good chance of it. But I am who I am and he either loves all of me or nothing. So ya this is a good thread and I am so glad I have a place to vent my fears where others understand thanks for reading and GOD BLESS~~~~~~~~~~~~~~Lyndarae

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Postby becat » Thu Feb 23, 2006 4:34 am

n/a
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cornelia

Postby cornelia » Thu Feb 23, 2006 10:51 am

This is a VERY good thread. I will come back to it later, although I don't have much to add. But my book is out and I have to take care of sending it to the right people etc and with my lack of energy it is a huge enterprise.

Once again: very good thread!

Corrie

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Postby Guest » Wed Mar 01, 2006 2:12 am

You know, I haven't told a soul this before because I am so embarassed and depressed by it. I don't want to come home from work at night. Not for any of the reasons so many people feel that way but because I am so tired that I can't deal with anything. All I want to do is come home and crawl in bed. The RLS is not consciously bothering me but I really think that I'm not sleeping much at all and just don't know it. The thought of having to fix supper, pay bills, wash clothes, pick up the house or just carry on a conversation is almost more than I can handle. I don't do all those things every night (although they need it) and my husband does help some. I know my fibro is kicking up more which sure doesn't help. I truly just want to be left alone except for talking to you guys. (Which Kenny does NOT understand--"Don't wear yourself out on the computer.") I can't explain how I feel, guess I shouldn't even be trying because I'm sure not making any sense. The sex is fine (really better than that) it's just the everyday stuff. I'm not sure about my marriage right now and that scares me. I'm just so tired all the time that everything feels gray. Gosh, what a downer! I'm glad we have this post but I think I should have just read and not written! By the way, I see that I'm not logged in. This is Ruby. Sorry!

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Postby becat » Wed Mar 01, 2006 2:55 am

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ViewsAskew
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Postby ViewsAskew » Wed Mar 01, 2006 4:34 am

Oh, Ruby, what a tough spot to be in. Between lousy sleep and the constant fatigue from the fibro, I've honestly always been amazed at how much you accomplish. I'd be exhausted if I were you. You do a lot for many masters.

Your story reminded me of my own past. About 15 years ago I was working on my MA. I worked 15 hours a week as a waitress, took a full load at a Master's level, AND worked 40 hours a week at an internship (the company was an hour drive each way). I left my house at 5:30 AM and would home at 7 PM on the nights I had class.

And I didn't want to come home.

I can't tell you how much your story resonated with me. I hated coming home. I had two teenage step children that weren't too sure of the situation and I just didn't have the energy to help them with homework, fix meals, or provide emotional support to those children. I felt like I was the worst person ever - how could I not give everything I had to them? What kind of a horrible person was I to prefer wandering aimlessly through the mall (I never bought anything) than coming home?

I didn't have RLS at that time, but I did have PLMD. A short time after this, my partner and I ended up in separate bedrooms because of my kicking. I never, ever put it together until this moment that the sleep was probably affected even back then. First I separated myself from him and the kids by avoiding home, then he separated himself from our only remaining source of intimacy. I'm sure you can figure out what happened after that.

Does Kenny know how difficult it is for you? I know that he has his own difficulties and you feel the weight of the world on your shoulders. Is there anyway that he can help you that you haven't thought of? Maybe assuming responsibility for paying the bills or making dinner?

I learned a lot from that prior relationship, Ruby. If you just want to share, we're all here. If you want some ideas, let us know and I bet some of us, who might be a little more awake or who have been in the same place in the past, can offer them. No matter what, please know that as much as I can without being you I understand how you are feeling.

Ann
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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jan3213
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Postby jan3213 » Wed Mar 01, 2006 12:04 pm

(((((Ruby)))))

Sweetie, I don't know how you do all that you do. I remember when I worked full time (before I retired) and my kids were at home. I had RLS and had many nights when I didn't sleep. I had to do all of the housework, cooking and then--the kids and my husband. Geeze--sometimes I just wanted to run away.

BUT, I didn't have fibro, etc. and my RLS wasn't every single night until after I retired. The last three years have been he**.

So, honey, I don't know how in the world you manage! I'm home all day and I don't get that much done sometimes. I read your threads and--not only do you work outside the home, cook, clean, etc. But, you also do things around your farm. No wonder you don't want to come home. And, I know--if Kenny is anything like my husband--he expects you to be cheerful and in a good mood. How in the world is that possible?

We've been through really tough times the last three years. I think several things played into it. But, one of the main reasons is I'm not who I used to be. Well, guess what?! Neither are our husbands. I got some great advice from a very dear friend of mine--it may sound familiar. She said to hold on and wait to see how things looked when I got more sleep and started feeling like my old self. She talked to me and was a real friend. Wonder who that was?!

The bottom line is--you have us, Ruby. And, even though your family expects a lot and sees you as the same Ruby (probably) that you WERE, they love you. How could they not?! I wish I could wave a magic wand or click some Ruby slippers and make all the bad stuff go away. But, my situation got better and I honestly didn't think it would. Hang on, honey. Pick up the phone or write here or something. But, you have friends who love you very much. You are not alone!

Don't know if any of this made sense, but it came from my heart to yours.

Much love,
Jannie
No one is alone who had friends.

lyndarae guest

Postby lyndarae guest » Wed Mar 01, 2006 3:18 pm

Well My Dear Rubyslippers, I think all the ladies said it best from their hearts. I can only add my love,support and friendship,plus my own story>>>>>>>>>> And how I want to thankyou!!!!!!!!!! You see I have been thinking for the longest time how sick in the head I was that I didnt want to go home(thought I was the only one who felt like that) so you opening up and sharing with us has helped me put some long over due guilt to rest THANKYOU.................. If I had it all to do over again (and I dont) I would have sat my husband down and told him all that I was feeling and not feeling,and make sure he knew it was not about him. He didnt have a clue............. I mean he knew about my rls and depression how could he not, but he had to guess why I was always so angry. He did everything in the world for me, and I was still angry. I didnt even know why I was angry. I do now but its too late for us...........It's not for you tho. Marriage is hard its one more job for you even tho you dont get paid for it its the most important job you will ever have. And the most rewarding. Sounds to me(and I am an outsider) that its time to sit down with the family and get some things out in the open, maybe they dont know how much you are doing,you cant do it all girlfriend!!!!!!!!!! Everyone needs to pitch in and do a little and then its not so much for anyone person. There is no faster way to get resentments than when you feel like you are a slaveworker for everyone,we all need help and its one of the hardest things to ask for(for me anyway) You must have time for yourself to unwind and breath and reflect if you do not have this time you are cutting yourself and your family short..............If you need to ask for it then ASK...............You would give it, and they will give it to you, but they are not mind readers, and you need to do it when you feel strong and calm even if you have to fake that part........speak from the heart and it will go to their hearts...........................Remember hon this too shall pass and when it does you wont be able to get home fast enough. Always remember miss RUBYSLIPPERS.................THERES NO PLACE LIKE HOME THERES NO PLACE LIKE HOME THERES NO PLACE LIKE HOME~~~~~~~~~~~~~~~~~~~~GOD BLESS~~~~~~~~~~~Lyndarae

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Postby Rubyslipper » Wed Mar 01, 2006 6:30 pm

You have filled up my heart and soul with your love and caring. Everytime I feel lost and like I am the ONLY ONE who has a problem, I find out that my friends understand and I'm not by myself anymore. I have a lot of thinking to do. My pride is getting in the way of reality. There is nothing wrong with my marriage that a good heartfelt honest talk won't cure. Right now my body is in control because my mind is on vacation. That has to change along with several other things. But when I need you, there you are every single time. Thank each and every one of you. You inspire me and I love you for it. Until I wrote that I didn't want to come home, I didn't realize that it was even true. I just hit me so solidly after reading everyone's posts that I knew it had been hiding inside me for a long time. Ann, thanks for sharing your story. Becat, I can feel your hugs. Jannie, thanks for reminding me. Lyndarae, bless you for reminding me THERE'S NO PLACE LIKE HOME! I'll get back to you all later. Ruby
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

NiteMan9

good answer

Postby NiteMan9 » Mon Mar 06, 2006 8:03 pm

I think I just found out why our bedroom life is in such a mess,lack of sleep has killed most of the romance in our life,I have had RLS for over 25 years and tried so many different meds that I dont know if I am comming or going most of the time, I'm a production supervisor 10hr's a day and I feel that I'm not the same person that I used to be,I allways feel wore out and get mad so easy and nobody understands why,after work I come home and really dont want to be around anyone,but I have several acers of land to take care of and elderly parent's that I also take care of, my only child is grown and married and I HAVE a wonderfull grandson,and I feel like everyone wants something all the time, so Ideal with it the best I can and try not to offend anyone but I can tell that they can see something has changed over the years, I just want to be my old self again, I lack any motovation so I force myself to keep up with the many jobs I have on my plate, and it is time to get a bigger plate but I fear of other complication's such as dropping dead from exhaustion. sorry for the long thread but it is hard to find a place to talk about it .


Brent

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jan3213
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Postby jan3213 » Mon Mar 06, 2006 8:25 pm

Hi Brent

Yes, RLS can sure mess up our lives---but you are not alone here! I'm glad you found us and you are very welcome to vent or just talk about things. Sleep deprivation affects every aspect of your life--as if you didn't already know that. :( We are all in this boat together and it's a big one!

Welcome and I hope you continue to feel free to post. I'm sure someone else will see your reply and welcome you, as well.

Jan
No one is alone who had friends.

becat
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Postby becat » Mon Mar 06, 2006 9:27 pm

n/a
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