HOW WE DEAL WITH SPOUSES AND PARTNERS

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ksxroads
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Location: Kansas

Postby ksxroads » Tue Aug 30, 2005 9:36 pm

Finally the day for neurologist visit approaches. I agree the medicine wheel is a contributing factor for my irritable, and lathargic attitude. Will called late last night after I had taken meds I must have been short with him as he got short tempered with me and in my brain fogged state I was honestly clueless.

Jannie thanks for sharing it has helped me a lot.

It is always the darkest sitting here on the edge as I tend to ramble aimlessly!

My daughter in law was so kind the other day when I said something about all the different doctors I have been seeing and she said you have to keep going till you find the one who does help.

Hazel

Jimmie
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Relationships

Postby Jimmie » Sat Mar 31, 2007 1:02 am

I am new to this forum and the foundation. I have had RLS for at least 3 years. No one knew what was wrong with me. I was sleeping all day walking the floor all night. Taking too many pain pills trying to feel better. I was first diagonsed with Sleep Apnea. I got that under control and for a while seemed to be better. Then it was sitting up half the night with the legs. Went from Dr to Dr and test to test. My husband has been such a support. He has been there through the death of 2 children, 2 brain tumors and so much more. At first he was there for RLS taking me to different doctors, but now I don't think he understands. I was in a period of remission and feeling so much better and then 4 days ago here we go again. First it was a statement of how much doctoring has cost us. Then his statement of, "you need to get this under control as it is affecting my health also". Then he mentioned my prowling around at night upset his sleep and he needs his rest in order to be alert for his job. I love this man and I know he loves me. We have been married 50 years. However, this is difficult for the to deal with. Does he not understand or is he just frusterated with the whole thing? Just need some answers and support. Jimmie

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ctravel12
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how to deal with spouses and partners

Postby ctravel12 » Sat Mar 31, 2007 1:31 am

Hi Jimmie and welcome again. I just sent you a post on the non-pharm forum.

First off, I want to say how sorry I am for the death of your two children and your husband having 2 brain tumors.

You are both going through a horrible time right now and all that I can do is offer as much support for you and your husband.

Are you seeing a dr for your rls, and if so are you taking any medication for it? Being sleep deprived is miserable. We all have been down that road and it is a very lonely one. you are not alone. We are here for you.

A good site to read to read is www.rlshelp.org Also on the forum New To RLS, Mayo Clinic Algorithm has an excellent article worth reading.

Please let us know how you are doing. You have found an excellent support group and we will be here for you always. If you feel like just venting, talking or whatever we are here for you.
Charlene
Taking one day at a time

Jimmie
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Postby Jimmie » Sat Mar 31, 2007 2:10 am

Thank you for your reply. to correct my miss information I had the 2 brain tumors. Anyway, I am on Cymbalta and was on Reqip but just was changed to Keppra. I am not getting along with it very well but haven't really had time to give it a true test. I use a pain patch, Lidoderm or darvocet or hydrocodene. I have used sleep aid, Ambien but try not to use it as I feel like I am in a fog the next day. It seems since our son died 3 years ago this next Christmas my health has gone down hill.
I have used neruroten, and some others I can't recall now. Most make me so sleepy and tired. I hate that feeling. I feel I really need a doctor who is well informed about RLS haven't found one yet but will keep looking. The foundations article on tips for finding a doctor has helped me realize what I need to look for. Right now I am going to a nurse practicner. We live in a small town a long way for a major health facility. Again thank you for your support. Jimmie

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ctravel12
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how to deal with spouses and partners

Postby ctravel12 » Sat Mar 31, 2007 4:13 am

Hi Jimmie Please again accept my sympathy for what you are going through. I do not have any children and cannot imagine what you are going through.

It is so important to find a dr that knows about rls. I have a great neurologist and am very fortunate as he does know about rls mainly because he does have it and knows what we are going through.

Jimmie, again please keep in contact with us and let us know how you are doing. It is a wonderful support group and we really do care.
Charlene

Taking one day at a time

becat
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Postby becat » Sat Mar 31, 2007 4:29 am

HI Jimmie,
Welcome and I see one of our most wonderful has already said hello....never too many around here. :D

My goodness you've had so much going on and now RLS to boot. God Bless you. Stress and lack of sleep can ruin a person's health so quickly.
There are times around here we wish we had a magic wand to free people from the things life serves up. This would be one of those times.

Your husband is probably just as tired as you and that does not make it easy for either of you, I know. There is no real way to explain to someone that does not have RLS. It's just not easy.
I hope that what we have written in the past is of some help to you. Read as much as you can.

This board is full of wise people, that have really put some thought into how we live well with RLS. Sometimes it's just an awwwww feeling to know someone understands how to say it out loud.

I don't want you to think that this is impossible for any doctor to treat.
1. Your doctor or NP must be a willing partner in you care. You are in charge because you know your body better than anyone. You quickly learn what things help and what does not. Stand strong in your own knowledge. RLS has an Algorthim, this is a guide to diagnosis and treatment. That can be followed by any doc.....The trick is your feedback on how what what is working for you.

2. Educate yourself well. With RLS, your best defense is knowing all you can about the disorder and the medications (if called for) that are most common to use. I would surely read the sticky notes in the New to RLS and Pharm sections of this board.

3. Print off anything and everything you can. This will help you educate a doctor or anyone else your working with.
When you go to talk to someone about this take your top issues or questions with you, but limit them to 3-4 things or issues to discuss.

Honestly, Older docs don't like the internet savvy patients. Doing their job you know, but don't blink even one time. Many doctors do not know enough to treat RLS well, but they can learn.
Don't take in a bunch of things to the doctor, as you might know they end up not listening after a few minutes. Not to mention they are waiting to hear key phrases (whatever they are) to help diagnose you.

Now for you husband, it just takes practice and time to learn how to talk about RLS. We all practice here.
I'm including a link to a video that you could show your husband to help him understand a bit. I am not sure it will help, but may. It's other RLSers that say what many people have said and it might help just to know that your not the only one. Your not my dear.

http://www.healthandfamily.net/campaigns/RLS.html

You've got all of us here to practice with. Whine at will, we all do.
This is a great place and the best people anywhere.
God Bless you and hang in there, your with us now.
Lynne

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jan3213
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Postby jan3213 » Sun Apr 01, 2007 3:59 am

Hi Jimmie

I just want to add my belated welcome to Charlene and Lynne's.

You sure have gone through a lot! I haven't had nearly as many health problems as you, but have had my share, and I know how it is to have a spouse not be as....supportive...as you would like them to be. I found, with my husband, that it's because he couldn't "fix" my problems. Men are like that, you know. But, I'm sure you already know that one! LOL

As you have seen already, there are some really great people here who've been through many different things. And, as Lynne said, RLS can sure take a toll on your health. And, if you have other health problems, lack of sleep just makes everything so much worse!

Please let us know how you are, what's up with you and if we can do anything to help. Someone here may have a suggestion--- Or, maybe, just listen to you. I know how much that has helped me!

Hang in there, Jimmie. We're here for you.

Hugs
Jan
No one is alone who had friends.

doety
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hubby

Postby doety » Fri Apr 20, 2007 2:35 am

Jimmie, I think the hardest thing is to try to explain RLS to someone close to you. We think we've explained it (several times) -- we also usually think it's so darn obvious that we're miserable, that we shouldn't have to say it again. It's so big inside us -- jumping around, demanding our attention, making us do crazy stuff -- and why can't other people see that? I think the truth is that most people are so involved in their own stuff that they don't see what our legs are doing to us. I think you just explain using as many different ways as you can (and the previous suggestions are great).
You also may need to get a bed that doesn't wiggle when you get up; that might help with his sleep.
And remember that we all know EXACTLY what you're talking about and going through and we wish you the best.

Polar Bear
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Postby Polar Bear » Thu Jul 12, 2007 5:04 am

The last post mentioned getting a bed that doesn't wiggle!!
We got a memory foam mattress a couple of weeks ago, it is to be recommended. I can slip out of bed without too much disruption, (as I have done this morning at 4 am). Now, an hour later, my legs appear to have settled, hopefully enough to get back to sleep, so I shall try and slip back into bed without disturbance. Hubby is usually able to say next day that I was up and about, but tho he is aware, it has not been enough to waken him up completely (I hope).
Here goes, fingers crossed that sleep comes. Betty

Steph615
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Joined: Sun Jul 29, 2007 10:19 pm

husbands

Postby Steph615 » Mon Jul 30, 2007 1:38 am

I have had RLS for about 20 years but was just diagnosed about 4 years ago....MY husband has been great with me. His always there and always know before I do that I am in pain..or I will just say that
I am fine but he can jut look at my eyes and know different.

There are times when I just sit and cry because I am tired of being sink and taking pills...being sick and taking plls...etc...etc.

I am reading alot and finding that alot of people with this aslo have back problems,,,I ahve had two back surgries and a neck one coming up...


I seem to have alot of problems with my strength..I have lost most of my strength on the left side of my body....

But I do have a great husband...runs bath water, has medicine ready, rubs, scratches, massages.......
But I also get tired of saying that I am sick..so sometimes I just say I am fine..when I am really not but you kow what I mean
Stephanie

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ctravel12
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how to deal with spouses and partners

Postby ctravel12 » Mon Jul 30, 2007 1:52 am

Hi Stephanie and welcome to this group. I am so sorry that you have rls, but you have found a wonderful supportive group. Your husband sounds wonderful and we are so happy for you.

I am glad that you are reading alot of the old and new posts. There is a fountain of knowledge out there.

Please keep us posted on how you are doing and the outcome of your neck surgery.
Charlene

Taking one day at a time

Steph615
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Postby Steph615 » Mon Jul 30, 2007 2:15 am

Charlene,

Thanks alot and I am excited knowing that I have someone else besides my husband....... and my 2 daugters 23 & 16 and my sister whom all have the same thing...I seem to have it more severe then the rest...even more that my sister....


So I wiill definately keep everyone informed...please do the same for yourself..

Steph
Stephanie

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ctravel12
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how we deal with spouses and parters

Postby ctravel12 » Mon Jul 30, 2007 4:31 am

Hi Steph You are more than welcome. I understand where you are coming from. My mom had it, but then no one really knew what it was then as I used to see her rubbing her legs all of the time and never asked what was wrong. I feel so bad now but lost my mom 4 yrs ago and am sure she understands. I also have an older sister that has it but like you mine is more severe then hers.

Thank you for your nice post and am glad that you joined the board.
Charlene

Taking one day at a time

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cmoore1958
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Postby cmoore1958 » Sun Jan 27, 2008 12:40 pm

I have been married for 26 years and it has not always been easy. Divorce or separation have been mentioned a few times over the years. But, being raised Baptist, I am a very stubborn and committed person. I believe I marred for life and was determined that communication in my marriage would win over everything else.

My husband had a different childhood than I did. His parents are not the supportive kind, but the judgmenal type. My husband, Rich, has a reading disability and his mother chose to treat him as a stupid retard his whole formative life. He's not dumb, he's actually very intelligent but his intelligence is "trapped" in his brain. Just a little insight into my personality -- when we were engaged I was at his folks house for a family BBQ as relatives from Louisiana were visiting and I was to meet them. My mother-in-law left something in the house. Rich offered to go get it for her. She responded, "Don't break or spill anything. Do you really think you can handle it with your problems?" I was really angry at her for her remarks so when Rich went inside the house, I lost it on her in front of her out-of-town guests. I told her that he may be your son, but he is my future husband who is not the idiot you wish him to be. Furthermore, if she thought I was going to sit by quietly while she took our whatever her problems were on Rich she needed to know that I was not going to stand for it and would continue to take her to task. Thus the beginning of a very bad mother-in-law/daughter-in-law relationship. :twisted:

It did take a while for Rich to be able to recognize my symptoms and understand my moods and discomfort/pain. Communication, about everything, is the key to a successful marriage. Once when he refused to talk to me I stood in front of him while he sat in his recliner and blocked the TV. I said nothing, he got made. When he got up to go to the bathroom, I followed. I stood and watched him do his thing in the bathroom. He started to laugh 'cause he couldn't believe the lengths I would go to so I could win my fight on communication. I pulled this type of stunt more than once, and each time he laughed a little sooner. In later years I asked him about his patient response to my stupid stubbornness and he replied that he wasn't quite sure. But deep down he knew I was right and just didn't know how to talkl.

My point is that all of use did not have the same type of childhood or upbringing. Rich's parents did not want communication they wanted authority. My parents wanted us to talk and share.

The rewards of the final breakthrough far exceed what we went through to get there. Remember that it is a process and all things take the appropriate and needed amount of time.

Last night I shared with Rich my experiences and things I learned from this board -- mostly by reading and understanding. In particular we discussed the partners who don't "get it" and my disbelief in why they would not "get it" 'cause he does. He was very concerned about this topic and how I felt. Bottom line is that he said when we're just at home hanging out he can tell when I'm in pain or uncomfortable. He sees that I don't sit still very much and that I read a lot. He has figured out that my reading occupies my mind and my rls stays at bay that way. But he also admitted that when we are busy running errands or walking somewhere or just doing stuff together that he doesn't forget about my health problems, he just doesn't think of them at that moment. Rich said he feels like a heel when I have to remind him by a subtle "honey, I can't walk that fast today". I let himi know that my reason for saying that is so he will know where I'm at physically and not to chastise him for walking ahead of me. Then he said something that made me wake up quick (again) . . . he told me that when I have to remind him he feels like he's let me down and he's concerned that I don't think he cares about what I'm going through. I did let him know immediately that I love him unconditionally and I know he loves me that way as well. I don't want him ever to feel he is letting me down because that is not what this is about. He does so much for me daily and his support is awesome. I reassured him as best I could and will watch his actions to make sure it was enough.

I guess what this oh so extensive post is about is to let those going through rocky times that with time, commitment and patience your love can evolve into a mature and communicative love. Nothing in life where relationships is concerned is quick and easy. After all it took all of us a long time to develop our personalities . . . the key is to meld our personality traits with those of our mate's and make a marriage personality that is above our expectations. It is possible, my marriage is an example of that. :D

I want all of you to know that even though I am new to this board, rls and fibro are not new to me. I have had a lot of really bad things happen in my marriage that with God's help made my marriage and myself stronger. I am here for all of you and welcome any questions, discussions, or requests for talks. My email is on the board. Feel free to use it.

I wish everyone a good day and a restful night. You are in my prayers and thoughts. God bless you.

Cyndi

becat
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Postby becat » Sun Jan 27, 2008 12:56 pm

Welcome to the board Cyndi.

Wow, that was a remarkable post. Awesome to read and digest, like eating the most extreme flavors and savoring each one slowly.

I can't thank you enough for sharing with your heart on this one.

Welcome to the family.

Lynne


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