New here and disgusted

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
Kirk
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Joined: Thu Jun 21, 2007 3:52 pm
Location: Lee's Summit MO

New here and disgusted

Postby Kirk » Thu Jun 21, 2007 8:10 pm

Hello to all
I've been lurking around reading many posts hereon. I have lived with RLS for appoximately 5 years. I have tried Mirapex, Requip and now neurontin. I guess I have noticed that it has gotten worse over the past year, and as many of you have posted, my sleeping times have diminished as well. Well last night was the last straw. My wife of 8 years told me last night around 1 in the morning to go downstairs and twitch there and then rolled over extremely p.o'd at me. This is after I have put up with 3 back surgeries on her, addictions and allergies for the past 8 years. For her to come out and say that and be pissed off at me for my problem. I guess I just needed a place to rant. If I could get rid of this I would, I do not wish this (RLS) on anyone.
Sorry for the rant, but I have no one else to chat too about this, and I'm so glad that I found this board.
Thanks to everyone here, who has posted there problems and solutions.

Kirk

ViewsAskew
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Postby ViewsAskew » Thu Jun 21, 2007 8:17 pm

I am so sorry. It's really hard to step back at a time like that and consider what she might have been thinking - you're so hurt and angry. How could she not be understanding when you've been there for her? Can't she see that you're suffering?

I've been down that road. It didn't have a pleasant outcome. If you'd like my perspective, let me know. I can share what hasn't worked. . .and what has. One relationship was torn apart. . .another has stayed strong. Not sure how much it was me, the relationship, the other person, etc. But, I have my thoughts, for what they are worth.

Welcome Kirk. Glad you found us. . .sorry you had to. Hope you find what you need here.
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.

Kirk
Posts: 7
Joined: Thu Jun 21, 2007 3:52 pm
Location: Lee's Summit MO

Postby Kirk » Thu Jun 21, 2007 8:20 pm

I guess it just feels like getting kicked in the gut. I didn't sleep the rest of the night and have been thinking of it for most of the day. I am pissed off to the extent. How dare she blame me for this. I didn't ask for it. I have always been there for her and to get his kind of result back.

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ctravel12
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new here and disgusted

Postby ctravel12 » Thu Jun 21, 2007 9:30 pm

Hi Kirk and welcome to this group. I am so sorry to hear what is happening. Have you discussed to your wife how this is hurting you and how you have been there for her during her surgeries, etc? I am not trying to say that it is alright because it is not; however she may not realize exactly what you are going through.

Please do not apologize for ranting and raving. This is what the board is all about. We will listen as we know exactly what you are going through.

You said that you took mirazpex, requip and neurontin. Are you still just taking neurontin? I have never used that med; however you may want to talk to your dr to see what he could give you.

Have you been to the forum New to RLS "Managing RLS" Mayo Clinic Algorithm has an excellent article regarding rls. If you are able to, print it out and bring it to your dr. I know this has nothing to do with the support that you are not gettiing from your wife but show it to her too as I am sure with her not having not rls she has no inclination of what you are going through.

I hope that you do not mind me suggesting this info to you.

Kirk, please keep us posted as we really do care and your quality of life is very important and being sleep deprived is a miserable thing to go through. Believe me, I have been there and it is not a nice road to go down.

We are pulling for you and hope to hear from you soon.
Charlene
Taking one day at a time

becat
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Postby becat » Thu Jun 21, 2007 10:38 pm

Hi Kirk,

You've been hugged and welcomed by some our of best around here.

But I add mine.

Yes, this is a pain in the tush, at best......No, not one of us would sign up or ask for this. It is just hard most days, after RLS reaches a certain level.

I wanted to tell you that I might have gotten mad myself. I'm on the sit and talk with her side. Empathy can go a long way with me, at least.

I had this conversation with my hubby last night, in fact......as I am in a bad way right now...He, also, has had several surgeries and understands sleep deprivation, but only for short periods of time........

However, I found it interesting that when I asked him to tell me how he deals with pain (and you might not have pain, but RLS is as bad with or without).
Anyway, I guess I got lucky and had him in his own "frame of mind" about what happens to a person that is dealing with pain or something like RLS.
He told me that he gets one minded, can't think clearly, get angry easily, etc......then add no sleep to the mix, it's all he could do, to be on task or even level headed.

For me, that was a blessing, as he knows I do this everyday. No breaks, no way out, just deal with it. No one can feel your pain, nor mine, it's a personal level and a personal thing. Can't really understand back surgery, because I haven't had it? Right? But I know how I feel and I can explain that.

I guess I'm telling you this for two reasons:

1. Your there and need the empathy from your wife, who should be there for you, like you have been for her. God Bless her and her battles.
2. Maybe you might wait and get that moment that I had last night, if she can empathize with you a bit from her own experiences, then you loop your experiences in with hers.

It can't be easy with two of you no sleeping and dealing with health issues. Seems a bit unfair that both happen at the same time.

You bet you can come here and rant, scream, whatever helps.....and I often think it does when we know everyone here just "gets it".......

Glad your no longer lurking. We learn best from each other.
Hugs Brother!
Lynne

KBear
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Location: Wisconsin USA

Postby KBear » Thu Jun 21, 2007 11:03 pm

In some ways I'm fortunate that my husband usually sleeps like a rock, and we have a king sized bed so if I'm thrashing around he can usually sleep through it. However, some nights I need to get up and sleep someplace else because for some reason this helps stop the thrashing.

It might be helpful for you and your marriage to have another comfortable place to sleep (or toss and turn) for nights when you are really disrupting your partner. Sometimes the couch just doesn't cut it but a futon might help. Depending on your situation you may need to get creative.

Our two oldest kids have grown up and moved out so now I have a couple spare rooms in addition to the couch that I can retreat to when the RLS gets too bad in the middle of the night. It helps.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

Penguinrocks
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Postby Penguinrocks » Fri Jun 22, 2007 12:56 am

Kirk,

Man, I am so very sorry!

I'm very sad at this. :cry: No one deserves that kind of treatment.

It is the worse thing, and, when someone you love treats you like you're making the whole thing up OR that you're doing it on purpose...well, it just frustrating as all get out.

Lynne is right, you HAVE been welcomed to this site by the best and you SHOULD feel secure enough to know that ranting and being pissed off are TOTALLY acceptable behavoir here and understood.

I would like to wrap my flippers round you and give you a warm penguin hug!

Penguin
Beware the Penguin

ViewsAskew
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Postby ViewsAskew » Fri Jun 22, 2007 1:20 am

Penguin. . .psst, don't scare him. . .it's a guy! Hugging and all that - he might not be ready for all these women descending on him with hugs. . .

Just in case he is ready - how about offering him one of these? He can have his choice of flippers only or multiple appendages.

Image

Image
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.

becat
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Joined: Thu Apr 29, 2004 11:41 pm

Postby becat » Fri Jun 22, 2007 2:22 am

And Miss Penguins has the best, most comfy, understanding flippers out there!

Kirk, buddy it's ok to feel relief that we understand and a little scared that we all offer love and support.

It's what we do best around here.

No fears, your with the family now.

Penguins Rock!

Lynne

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ctravel12
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new here and disgusted

Postby ctravel12 » Fri Jun 22, 2007 3:20 am

Hey Kirk Hugs are the best things that is out there. I take as many as I can take and so does my hubby. Hang in there and we are here for you.
Charlene

Taking one day at a time

Polar Bear
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Postby Polar Bear » Fri Jun 22, 2007 10:36 am

Hi Kirk, yeah looks like this needs talked out into the open with your wife at a time when tempers can be held nicely. (or even if it means a 'scene').
I have been very lucky with my husband's attitude, but I am always aware that anyone's partner can have a moment when they get fed up with the rls'er tossing and turning. I know I would be devastated if my husband complained about it. (Tho he may think it) If I get really bad, I usually go to the spare bedroom for a couple of hours, or go walkabout downstairs for an hour.
I have just ordered a memory foam bed to try and help any disturbance.
Good luck.. maybe it all needs to be 'out in the open' and the air cleared.

Group Hug... Betty

Kirk
Posts: 7
Joined: Thu Jun 21, 2007 3:52 pm
Location: Lee's Summit MO

Thanks for the Hugs

Postby Kirk » Fri Jun 22, 2007 11:21 am

Sorry, I was off the board for last night. My wife and I didn't talk much last night. I guess I am still on the p.o'd side of things right now. Thank God, that we do have a spare bedroom as I tried the couch for a while and that was not cutting it. I probably average around 4 hours of sleep a night. I just don't understand, she knows that I am seeing a doctor on this and trying out several ways to deal with this horrible syndrome. I just don't why this came out now (from her). I think I do pretty well in dealing with it. I try not to let it bother me and just go about my life. To all that have responded to my situation all I can say is Thank you. It is so great to know that there is a place that I can talk to other people who are in this situation. Again Thank you - and don't worry I like hugs, they give you that warm fuzzy feeling and let you know that everything is going to be alright.

Kirk

Penguinrocks
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Postby Penguinrocks » Fri Jun 22, 2007 11:26 am

***flipper applause**** w00t! I LOVE givin' hugs!

Today is a brand new day Kirk..I live my life as you. Keep it to myself, try to live each day to it's fullest and try NOT to show anything.

Scott is home for good now and I'm going to MASSAGE THERAPY tomorrow! oh good Lord i need it! magic hands and crystal work...sigh...but gotta wait til 1 p.m....oh well, it will be WELL worth it...

I recommend this as not only does it feel AWESOME it does something for the psyche and self esteem as well....

love ya

PENGUIN!

Becat's rock too! :-)
Beware the Penguin

ViewsAskew
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Re: Thanks for the Hugs

Postby ViewsAskew » Fri Jun 22, 2007 5:21 pm

Kirk wrote:Sorry, I was off the board for last night. My wife and I didn't talk much last night. I guess I am still on the p.o'd side of things right now. Thank God, that we do have a spare bedroom as I tried the couch for a while and that was not cutting it. I probably average around 4 hours of sleep a night. I just don't understand, she knows that I am seeing a doctor on this and trying out several ways to deal with this horrible syndrome. I just don't why this came out now (from her). I think I do pretty well in dealing with it. I try not to let it bother me and just go about my life. To all that have responded to my situation all I can say is Thank you. It is so great to know that there is a place that I can talk to other people who are in this situation. Again Thank you - and don't worry I like hugs, they give you that warm fuzzy feeling and let you know that everything is going to be alright.

Kirk


In my limited experience, waiting when still P.O.d is the better part of valor. Wait, that's something else. But, it applies here, too. Truly.

I am soooo glad you weren't frightened away by ten women pouncing on you with hugs and advice the minute you walked through our computer portal, lol. They are the best.

You probably won't know why until you can put aside your anger and look to her to ask. Maybe she is so worried about you and the relatioship (and afraid to say it) that this is how it came out. Sometimes what we do and how we feel don't appear to have anything in common. Someday I'll explain the motorcycle story. . .

It could be that your moving around prevents her from sleeping and she is getting tired and testy, too. I know that I am at my worst when tired - I am short tempered and I will fight to preserve any bit of sleep I can get. In my current relationship, a Tempurpedic mattress saved the day. It doesn't register movement, so when I move a lot, he doesn't feel it. I used to awaken him all night long. In a way, it was great for me because he was a barometer for how well or poorly I slept. Now I have no idea if I move around a lot on any given night. . .because he doesn't feel 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.

Kirk
Posts: 7
Joined: Thu Jun 21, 2007 3:52 pm
Location: Lee's Summit MO

Postby Kirk » Fri Jun 22, 2007 5:55 pm

We have been discussing a new mattress, but the financial situation that we are currently in does not warrant a new one.
I can see her side of it too, but she is not the one that gets up early anyway, like I do. My day starts at 5:00 in the morning and ends at 5:00 in the evening. She starts anywhere from 11:00 in the morning and end usally by 4, 3 days a week, but that is beside the point. I never wanted here to work more than what she wanted to. I guess all I am really looking for is an apology that she snapped at me, and that would make all the difference in the world. I do not hold grudges against anybody, because what good comes out of it nothing IMO.

Kirk


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