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?
Guest

Post by Guest »

Brent, I know exactly how you feel. I work 10 hour days also (only 4 days a week tho') and by the time I get home I just want to be left alone. This is so hard for people, especially my family to understand. What we HAVE to learn to do is let go of some things. I am thinking about making a list of all the things I THINK I have to do and start crossing some of them off. Of course, then I feel guilty because I should be able to do it all, right? I truly need to talk to my husband. I don't want him to think I'm just a slacker all of a sudden (not that he would) but it would seem like it in my eyes. It's really totally up to us. If we are unhappy with our lives, we have to do something about it. That may mean different doctors or meds, a different job, lifestyle, less involvement in clubs or organizations, more rest time, letting things go. It's going to be hard but we can be a cheering section for each other as well as the support group we are. Hang in there, Brent. Keep in touch, let's work on this together.

FidgetBoy
Posts: 317
Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Post by FidgetBoy »

<hopes this thread isn't just for the girlz> My wife is asleep already and I'm up and the meds aren't working tonight... is it wrong to be jealous that she sleeps so well? The one thing I didn't count on was the affect of the narcotics on my sex drive. :shock: My RLS can sometimes be so annoying that I am too cranky to even consider being intimate. I think I'm not being a very good husband lately. :( She is so good to me and seems really understanding-- but it doesn't really help my guilt about it all. But- we have to be strong, and pray for better nights to come? G'nite all-- may sleep find you wherever you are!
Josh

jan3213
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Location: Illinois

Post by jan3213 »

Josh

I've been jealous of my husband many nights...and, when he says he didn't sleep very well and I heard him snore all night----well, maybe he didn't sleep as good as he usually does, but I was UP all night with RLS.

We rarely sleep in the same bed anymore--- I am up and down so much at night, that it's not good. But, we manage to keep the intimacy in our lives in other ways. Of course, we no longer have chidren at home......

I understand the way you feel and I KNOW many others do, too. Don't beat yourself up, Josh. You can't help what's going on...

Good luck to both of you. Keep your chin up.

Jan
No one is alone who had friends.

Mtpeanuts
Posts: 13
Joined: Sun Jun 25, 2006 10:51 pm
Location: Indianapolis,Indiana

Too much pain=Too little hubby time

Post by Mtpeanuts »

Hubby thinks I'm not in the mood.I'm starting to hurt day and night now.We have been yelling at each other 2 days now.Im 44 ,I feel like 110 yrs old.

ksxroads
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Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear One,

Stress can be relenting when we are dealing with RLS alone. Throw in the rest of the world and it certainly can be overwhelming. It is difficult and I can empathise with your feelings. Sometimes I just have to step back, take a deep breath and see where my priorities are. Sometimes it is the only thing I can do - to stop, say I am so far down in this pit, if someone doesn't send me a ladder quick I may never get out.

And then even when they send me a ladder, it is so dark I am unable to find the rungs of the ladder and crawl my way out.

Fortunately the doctors have managed to get my RLS under control. However, the fibro, or even possibly other aspects of RLS which affect my body I still encounter days where I feel 110... people comment, want to be helpful, yet if they do not have a first hand experience with RLS they will never know how greatly it affects your daily quality of life.

Hopefully you will be able to find compassion and freedom by visiting this board on a regular basis. It is the one place to which I can come and know that no matter how much I need to vent, no one will judge me.

Hopefully in time you will find the days of confusion and pain fewer and fewer apart!

************Positive Energy*************** Hazey
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

This is my first time to look past the "RLS-General Topics" part of this discussion board, so I am again amazed at how there are other people who understand how I feel. There have definitely been times when I have been jealous of my husband (who is the kindest, most supportvie person in the world) when he is sleeping peacefully and I have just wanted to wake him up and ask him to be with me because RLS is one of the loneliest things in the world because you are up alone and everyone else is asleep. The thing is, if I asked him to stay up with me, he would, but I don't because he works just like I do and has the extra burden of being married to a night walker! I know how lucky I am to have him and have found myself feeling guilty, just like Josh mentioned, because I sometimes feel cranky, tired or (most often) weepy because I am exhausted and my symptoms have been much worse lately. My husband is understanding, but I still want to be one of those wives who is, I don't know what, maybe a little more normal. I sometimes think RLS is turning me into a whacko! Thanks for being so honest, everybody. I have really been struggling with my guilt about all of this and it helps to hear other people describe their own experiences.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

You have really touched on the keystone of RLS...the lonliness of those nights walking the floor. But we have to learn not beat ourselves up over our feelings of jealousy because we NEED our sleep and can't get it. Feeling guilty is all a part of it too. What we are going through, no one else really understands except another RLS sufferer. All the negative feelings we have are NORMAL even though they aren't pretty. That's why this board is such an important and integral part of us. We all UNDERSTAND those feelings and are trying to learn to deal with them. Sometimes we can help others, sometimes we need the help ourselves. Thanks for the input Brandy and please keep on searching this board and responding.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Post by ViewsAskew »

Well, here's a twist on this subject. . .

OK, I am officially peeved that many of our guys and gals get relief from an orgasm and I don't.

I never found them to help before, but tonight I actually got RLS from sex. Yeesh. . . It's 4 AM and I'm up typing on the board instead of sleeping with my sweetie. Actually, I'm up because of reflux - I ate chocolate and cinnamon before going to bed - a known problem. Not sure what I was thinking.

This is probably making no sense. DH and I planned a late afternoon interlude - I've found that my full dose of opioids do interfere with my ability to orgasm (and my desire for sex), so we schedule sex to occur before my meds have time to work. It sort of sucks to schedule sex, but it's the only way we can make sure it happens. Otherwise, between the opioids cutting into the sex drive AND my ability to orgasm, I'd never have sex again. If we schedule it, I can think about it and get sort of excited. I always am happy to be there when it starts - I just don't even initiate it if it's not scheduled.

So, back to the story, once again. . .

But, due to unexpected things that interfered with our timing, we started much later and ended up having sex instead of having dinner. Not a problem (missing dinner), as it was a very nice evening and one we needed and had looked forward to. But, as soon as I relaxed after the last orgasm, my legs started. How ^%$#$@% rude!!!!!! One of the most intimate times we share is after sex and it was taken away - I love layign there half asleep, so connected. I'd taken 1/2 my meds immediately prior, but it's possible they hadn't had time to work yet - besides all of this happened later than we planned, so I should have taken my meds a little earlier as it was. But, why in the world did I have to have RLS when so many people find orgasms help????

Of course, immediately after I had to walk to Walgreens to get my script in before they closed, then we decided to walk to the grocery store to get a few things, and I ended up eating dinner at 11 PM. Dinner was healthy and nothing to cause reflux, but I just had to have some chocolate covered soy nuts and then a piece of cinnamon toast at around midnight. I know better - I can go months with no reflux if I simply pay attention to what I eat and when I eat it. I was probably feeling sorry for myself and eating chocolate :oops:

Now, it's 4 AM and I was awakened at 3:30 with the reflux, so I'm reading boards and waiting for antacids to work and feeling sorry for myself :( .

Even with my RLS under control 99% of the time, it still has the ability to interfere.
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.

FidgetBoy
Posts: 317
Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Post by FidgetBoy »

I'm sorry you had such a rough night, Ann! :( I don't get relief from romantic interludes either. Sometimes it actually worsens my legs... which doesn't surprise me since physical activity really sets my legs off. ps.. I was up until 4 am as well-- my body gave out after my dose of oxy yesterday afternoon and I napped for 5 hours! :shock:

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

Ann, you have a right to be peeved! It seems like you should be getting something positive out of this, right? I'm sorry you and Fidget had such bad nights. We really should consider finding a way to get the chat thing going. Maybe getting some things off our minds could help with the frustration (and loneliness) that comes from pacing the floor (especially when you want to be cuddled up to your sweetie!).
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

ViewsAskew
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Post by ViewsAskew »

Josh, I'm glad to hear that it sometimes worsens RLS for you, too. It takes away my angry self-rightousness and my inflated self-importance :roll: .

I think you are right - it is the amount of exercise that happens. I know that I was a little more aggressive than usual last time, and spent more time "in control" than usual. I can stop myself from doing that in the future (though I'm sure my DH will be sad about that), but it's probably harder for you. As a guy, it's probably hard to not do at least some (and depending on your relationship) or most of the physical part.

Sorry that both of you were up, too. I always wish I'm going to be the only one here when I get here in the middle of the US night.
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.

Walking After Midnight
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Post by Walking After Midnight »

I've never been much of a "cuddler", especially after sex. I used to like when we had small children, cause I knew Tami needed that "cuddling" thing and little kids are perfect for that. Now that everyone is probably psycoanalyzing me..."ooh he must have had a very stern Mother" or something like that. "He must've not had any pets". heh.
Not to be a buzz kill, but over the years I've gotten quite used to sleeping alone and almost prefer it. Not always because of RLS. But I'm one of those guys who needs complete darkness and silence when it is actually time for sleep and it's possible. (More psycoanalyzing) And a fan going...for white noise not for wind.
In a perfect world, I would've married someone who also had RLS. We could've had two bedrooms and completely understood each other. I say that not only for me but her too. Now tho after 24 years, I think we've almost reached that point anyway...understanding each other. But like someone said, I still get mad/jealous when she's been in bed for only 10 minutes and is sound asleep.
So now she just walks by when she wakes up to use the bathroom in the middle of the night, or she says something like..."You doing ok?".

Rubyslipper
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Location: Missouri

Post by Rubyslipper »

Life with RLS sucks.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

steelergal78
Posts: 7
Joined: Mon Aug 07, 2006 8:43 pm
Location: Central Ohio

RLS - relationships - and more meds

Post by steelergal78 »

I'm on so many meds I have no idea which one is doing it - maybe a combination of them all - but I don't care if I NEVER have sex again.

I just turned 46, and my hubby (whom I believe to have an ED problem but won't talk about it) and I haven't had IT in about 8 months - not that I'm counting mind you.

I cringe whenever it's bed time. I mostly hate my bedroom because it represents only one thing to me: STRESS. Stress because I can't sleep (insomnia, and when I DO sleep I do not get stages 4 and 5), stress because I don't want sex and don't want him to approach me for it, stress because I fear having RLS attacks. :(

I don't like to go home after work (mostly because it's a 30 mile drive one day and I get sooo tired of the driving I just want to sleep in my car.) I try to wait til I hear him snoring before I go to bed so I know he won't approach me. We've been married over 23 years and I feel dead inside.

After reading all these posts, it seems evident that RLS/Fibro/etc could be part of the cause of this hatred of going to bed. It used to be fun and interesting - he's purdy good, if ya know what I mean - but now it's the last thing I want to do. I'd rather be drug by a wild horse through a briar patch than to go to bed at night. I stay up late on purpose sometimes to literally exhaust myself in hopes that I'll fall into bed and go instantly to sleep. NOT!

Maybe I'll try to the white noise and dark room thing. Haven't done that before. (((((sigh))))) ~~ :?

ViewsAskew
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Post by ViewsAskew »

Steelergal, it may not be all the meds, but I can attest to them being a likely culprit! It may not help that the hormones are probably changing some, too. And being chronically tired? Nothing like that to wipe out any interest I might have in sex!

I can only imagine how hard it must be for you to feel you need to hide like that. I remember similar behavior on my part many moons ago. Chronic disorders can take so much out of our lives and we have seemingly no ways of handling all the effects.

It sounds like some different meds might be in order. If you still are not getting the sleep you need and are chronically exhasuted, there are other options that may help. Do you have a really good doctor on your side? That is a tough thing to find. . .but really can make a huge difference.
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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