I feel horrible for my husband...

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
aveerik
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Joined: Sun Aug 25, 2013 9:07 pm

I feel horrible for my husband...

Postby aveerik » Tue Sep 10, 2013 7:27 pm

I have such a great husband but I know this WED cant be understood by someone who has never had it. I have been staying on couch because I don't want to keep him up. He is a fire fighter and gets very little sleep while at work for his 24 hour shift so I want him to get all the sleep he can while at home. I am so tired and the side effects make me want him to not even touch me.
Does anyone have an idea of something I can have him read to help, something that isn't completely over whelming?
I kind of joked to him about the list of side effects on the Mirapex about hyper sexual drive, I think that made him happy, but the opposite has happened.
Any advice on this subject would be greatly appreciated.

Polar Bear
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Re: I feel horrible for my husband...

Postby Polar Bear » Tue Sep 10, 2013 8:02 pm

I feel for you. This is a situation that many of us find ourselves in.
Feeling awful, always exhausted, is it any wonder that libido drops. Then there is the difficulty of being able to lie still and peaceful just for a cuddle.

I've more or less made it work for me. My hubby can't know what the sensations feel like but he can see the other effects of no sleep, being unable to sit/lie and relax.
I make sure that my medications are taken on time in particular in the evening. Going to bed is therefore as normal as it can be. However even if my symptoms are controlled I will still be awake until around 4 or 5 so I'm up and down, in and out of bed.

What I did.
I got a memory foam mattress which makes movement just a little less obvious, i.e. getting in and out of bed.
We go to bed and when we settle for the night hubby is asleep within minutes. I will read my kindle with backlight.
If I feel like it I get up and go downstairs, if I have WED symptoms I get up and go downstairs.
Sometimes when the symptoms start to settle a bit I'll go to the guest bedroom and there I can try to go to sleep and can kick about as much as I want. I may well get to sleep.

When I later wake up which I always do... I will go back to our own bedroom. This could be 6am.... or whenever.
If I am up and about just because of insomnia and my legs are ok, I go to our bed when I am ready.
But I will have started the night with hubby and only get up after he is asleep. And get back to join him before he awakens in the morning.
He knows this is how I cope. He knows that at any time during the night if he wakens that it is likely that I will not be there. I might be downstairs at the pc, I could be in the guest bedroom either reading for hours, or because I'm thrashing about. It's just a part of our life.
But the point is that I don't keep him awake.

With regard to libido, many of us have had a negative effect because of medication.
When you say that you want him to not even touch you - is it libido you are talking about.
I try to be medicated enough to be able to be normal at the start of the night, i.e. symptom free (sometimes it doesn't work)
And as for being interested..... well...... sometimes a bit of effort can change things around a bit...... and also dare I say it - so as not to hurt feelings a little - just go along with it.

As for some suitable reading material. If I recall correctly, Dr B's book might touch upon this subject, I can't be certain.
Someone else will know the answer to that.

And just to let you know you are not alone..... one member fell asleep at a most inopportune moment !!
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

aveerik
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Re: I feel horrible for my husband...

Postby aveerik » Tue Sep 10, 2013 8:43 pm

Thanks Polar Bear
I don't think its a libido issue, its like sensory over load to have him touch me. Normally when we go to bed I read, he puts his hand on my shoulder and falls asleep. Last time he did that it not only made me physically anxious because I felt I certainly can't move if his hand is on me, but it also made the crawly feeling in my body intensify. Last night when I finally went to bed in our king size memory foam bed he was all the way on other side as far from me as possible and he always is in the middle of the bed. It made me feel so sad.

I am wondering if I need to take the Mirapex a lot earlier, I usually take it right before I go to bed when symptoms have already started. I usually eat something first as it makes me feel ill. I will try it earlier and hopefully eliminate the symptoms starting.
His schedule is 24 hours on and 48 off and I have always slept better on the nights he is at work.

I am always up to "just go along with it" but he knows I am exhausted so he won't even try anything. But I know as I am sure most wives do when that subject is on their minds.

I was going to order Dr. B's book anyways so hopefully that will help. Thanks again

Polar Bear
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Re: I feel horrible for my husband...

Postby Polar Bear » Wed Sep 11, 2013 12:28 am

I recall other posts where folks have commented on similar feelings as the sensory overload you mention.
And the hand on the shoulder bit, I do know what you mean, as you say it's as tho the act of his doing so means that you are immediately restricted in any movements you may need to make and this makes you anxious.

Mirapex takes about 90 minutes to work and so you should be taking it well before you plan on going to bed. Taking it with food to reduce any nausea is a good idea but bear in mind that this makes the medication take even longer to work.

If you try taking it about 2 hours before bedtime this may give you a 'window' of at least a couple of hours symptom free for cuddles time.
This is a subject that has had previous discussion and you should be able to pick up some posts by working your way through this section 'Help for Relationships'. Unfortunately there is no easy way, just trawling.
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

rthom
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Re: I feel horrible for my husband...

Postby rthom » Wed Sep 11, 2013 4:37 am

aveerik wrote:I have such a great husband but I know this WED cant be understood by someone who has never had it. I have been staying on couch because I don't want to keep him up. He is a fire fighter and gets very little sleep while at work for his 24 hour shift so I want him to get all the sleep he can while at home. I am so tired and the side effects make me want him to not even touch me.
Does anyone have an idea of something I can have him read to help, something that isn't completely over whelming?
I kind of joked to him about the list of side effects on the Mirapex about hyper sexual drive, I think that made him happy, but the opposite has happened.
Any advice on this subject would be greatly appreciated.



Any chance this problem is being made worse by your low blood pressure? Also is your Mirapex making the BP low worse--if so maybe it's creating the problem somewhat?

I don't know how to PC'ly suggest this but maybe check for yourself at different times of the day (varying times away from your Mirapex) and see if you get better sensation or interest? Maybe the BP thing is just making it worse and then you could just change timing around of your meds or time with your husband, Hope these thoughts help some.

ViewsAskew
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Re: I feel horrible for my husband...

Postby ViewsAskew » Wed Sep 11, 2013 5:43 am

I am too tired (it's been a hellish several days - little sleep) to respond thoroughly - just wanted you to know I totally get the not touching thing. The anxiety that a touch causes is alarming in itself! Having the WED under better control resolves that a lot - for me.
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.

aveerik
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Re: I feel horrible for my husband...

Postby aveerik » Wed Sep 11, 2013 6:01 pm

Not sure if low bp is at all to blame, it has always been low, just not this low. Still waiting for heart monitor results.
It figures I slept okay last night and was looking forward to my husband coming home this morning and of course he gets a call shift so won't be home til tomorrow morning.
I will start taking Mirapex earlier, I did last night and it seemed to help. If the symptoms start then it seems nothing helps so stopping them early enough may be the key to making this rx work.
Thanks for your posts Ann and rthom

Polar Bear
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Re: I feel horrible for my husband...

Postby Polar Bear » Wed Sep 11, 2013 9:43 pm

You are correct in that once the symptoms have started then the medication has a much harder job. Keeping ahead of the symptoms is the way to go. :D
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: I feel horrible for my husband...

Postby ViewsAskew » Thu Sep 12, 2013 3:06 am

aveerik wrote:Not sure if low bp is at all to blame, it has always been low, just not this low. Still waiting for heart monitor results.
It figures I slept okay last night and was looking forward to my husband coming home this morning and of course he gets a call shift so won't be home til tomorrow morning.
I will start taking Mirapex earlier, I did last night and it seemed to help. If the symptoms start then it seems nothing helps so stopping them early enough may be the key to making this rx work.
Thanks for your posts Ann and rthom


Pramipexole, Mirapex in US, takes about 90 minutes to work. As you and PB have noted, it's KEY to stay in front of the symptoms.
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.

EeFall
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Re: I feel horrible for my husband...

Postby EeFall » Thu Sep 12, 2013 6:04 am

aveerik wrote:I have been staying on couch because I don't want to keep him up.

I know you are talking about your husband but I want to focus on the sentence you wrote above. If you love your husband and yourself too don't get in the habit of sleeping on the couch. It is a bad idea for WED and you didn't mention if you also have Sleep Apnea too as many of us do on this site, as in having to use a CPAP machine. You need to take care of yourself and that means getting as much restful sleep as you can and sleeping on the couch isn't going to provide that.

In the long run you won't be doing your husband any favors if you are not getting restful sleep. Think grumpy :lol: If at all possible try to sleep in bed with him. My wife and I both wear earplugs every night and it really helps to not disturb her. Also we have a King bed, it is huge and provides more space between us. She hates for me not to be in bed and your husband probably doesn't like it much either. If you can't do that hopefully you have another bedroom where you can sleep in a comfortable bed. There are many ways around it but the couch isn't one, and I speak from experience, especially if you are having problems with physical closeness, it will tend to make you even further apart.

As far as physical closeness we used to cuddle and lay together getting tangled up with our arms and legs :) but I can't do that even when the meds are working great anymore. It makes my RLS much worse. We gave that up over 10 years ago but it doesn't mean we love each other less, she knows that I can't do that so she doesn't even try. When we are at home she has her side of the L-shaped sectional and I have my side. We have gotten used to it but before WED it was much different. It is just another one of the problems with this disease. I hope you both get restful sleep!

ViewsAskew
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Re: I feel horrible for my husband...

Postby ViewsAskew » Thu Sep 12, 2013 9:33 am

Wow - I swore I answered this before....but I've had such screwed up sleep, I could have passed out typing it and not posted it.

It's so important to find a way to keep that intimacy - but I think you already feel that way. I TOTALLY get you with the touching - it's an inner anxiety. My husband looks so concerned and moves to hug me (when the WED is crazy) and I move back before he can get close. I apologize. I tell him I get it....and the look in his eyes kills me. It's like I'm rejecting him. And, I am. Just for different reasons, but to him it likely feels the same.

We try hard to do other things, but it's a struggle. I often can manage a few minutes of a cuddle when he's falling asleep. I leave the minute he is asleep. Or, I call him back to bed in the morning when I wake up and the WED is not there.

We bought a new mattress so that my movements don't wake him - he was getting no sleep either and the couch gets old fast.

In terms of getting it, he possibly can understand. It can help to find something that is difficult for him. Does he hate being tickled? Has he ever stuck his tongue on a 9 volt battery (the resulting feeling in your body is MUCH like WED is for me) ? Does he hate nails on a chalkboard? Has he ever been hurt, physically, so that it hurts to lay down and you can't sleep from the pain? Maybe a toothache....there's something that makes him anxious and that he dislikes and if it happened all night long, he'd get no sleep. If he imagines that, he will get it. It's not that he needs to understand the exact feeling (though the 9 volt battery is helpful there), but that he get that the feeling is what prevents you from sleeping.
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.

aveerik
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Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Thu Sep 12, 2013 9:40 pm

Thanks Ann, that helps a lot. Luckily I don't get any real symptoms during the day, and with his schedule 24 on 48 off and yeah the kids are back in school we managed to "connect" this morning:) I feel a lot better. I know what you mean by that look in their eyes, breaks your heart. He hates to be tickled so I will put it to him that way.
I am not doing well with the Mirapex, my doctor is referring me to a neurologist even though my request was for a sleep specialist. After a ton of reading from this site and Dr.B's site I am going to ask for methadone or suboxone. Preferably suboxone as it doesn't have the stigma methadone has attached to it although if anyone dares to take issue with me on that I will love to inform them how ignorant they are. I just hope this all happens fast. I am terrified of augmenting, losing efficacy, and being disabled as I would surely be if I had this more then just at night. Not that night time and no sleep is a walk in the park.
I am sorry your sleep is so screwed up, is there a reason why or is it just always?

ViewsAskew
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Re: I feel horrible for my husband...

Postby ViewsAskew » Thu Sep 12, 2013 10:24 pm

On my way out the door - will answer more later....

But, just having a bad time with meds right now. Comes and goes :-) Thanks for asking.

Per the suboxone, there isn't much (any) research that this helps. I spoke with a doctor about who refused to try it. It makes sense to me it would help, but the doctor said I didn't understand the drug's interactions (and he's right!). But, it has worked for some...we need more data on it.
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.

aveerik
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Joined: Sun Aug 25, 2013 9:07 pm

Re: I feel horrible for my husband...

Postby aveerik » Fri Sep 13, 2013 4:40 pm

Eefall I for some reason missed your post but it was great so thank you. I will try to stay of couch but I have to move so much that I can't stay in bed when my husband is home and symptoms are bad. Our master bedroom is downstairs, our 2 kids have rooms upstairs and we have a bonus room with an uncomfortable futon couch bed from Ikea in it. Maybe when my almost 15 year old goes into the Marines I can use his room. Please please let this be controlled before then.
Last night I went to bed first, fell asleep, had a good night, and he fell asleep on couch and stayed there. He literally can fall asleep anytime and anywhere. When he came in early this morning to say good bye I wanted to say something but was to out of it so I will tell him tonight not to sleep on couch, that just makes me feel worse.

Polar Bear
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Re: I feel horrible for my husband...

Postby Polar Bear » Fri Sep 13, 2013 6:50 pm

aveerik - I totally get it about feeling bad when you awaken to find that hubby has been on the couch. This has only happened to me a couple of times (and it was cos I was snoring - he says) and I hate it, it spoils my entire day. If I sometimes get a nudge (for snoring - who me ?? ) I would sooner go the the spare room myself. Ooops just thought, maybe it is a control issue... if I go to the spare room then I can control getting back into 'our' bed. Oh.... that opens a whole new can of worms !!

Something that many of us have found out is that we sleep much better alone.
But of course none of us want to resort to that except in an emergency must have sleep situation, so we are constantly balancing between sleep/intimacy/..... etc.

How I decide - if hubby is working the next day and I am restless (or snoring !! ) I might get up and go to the spare bedroom.
If he is not working the next day, then I stay where I am.
Unless it suits me better to move cos of wed symptoms etc.

Ann - sorry to hear of your meds and sleep issues. We are never allowed to become complacent.
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


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