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?
becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

HOW WE DEAL WITH SPOUSES AND PARTNERS

Post by becat »

Ok, I'll start this..........
I've not been the only one to mention that this is a disorder that needs a sign. Something that points out to others that this has an effect on our daily lives and those of our families. I'm sure we've all talked about it, but I thought that this thread might come in handy for the newcomers and us "oldies" as well.
How do we go about sharing this with our spouses or partners? I had no idea that my wonderful husband truely had no clue about my body's fight with ME! He saw that I got no sleep and has protects me well when I can. He's gone to great lengths to be supportive when I cannot walk well and am in great pain. But he has had no idea what the past ten years was like for me on a daily basis.
TOTALLY MY FAULT. I'm sure I suffer from ITYSRMM ( I think you should read my mind). I thought he knew that when I said pain, he knew what I meant. Itching, stretching, or pacing was just the way I had become. He didn't married that woman, but he now lived with her.
When I finally got brave enough to say I need to talk, I was just shocked at how little he had known about what I was going through. That I was affraid to drive because I wasn't alert enough. I didn't watch TV with him, because I simply could not comfortably. I'd go to bed at the same time and slip out when he fell to sleep, because that was my battle field. I hated to ride for long trips in a car or plane, even though we had always enjoyed the time together. I now drugged myself to live through it. That stress made it worse and hope was not apart of my heart. He deserved better from me and I think I'm moving in the right direction now. Ever so slowly, but moving forward.
I had to get brave enough to talk to him about this and it was not the easy way out for me. I'm old fashion in too many ways. I needed to buck it up and deal with it. Maybe, I'm not good about sharing my feelings with someone so close, I might be weak. Silly, I know because I seem to open here, where it's always safe. But ya'll don't have to see scars to know where I'm at.
WEll, I did get brave and others here have too. But are there more out there that are not being brave and sharing this with the one's they love for the same reasons? Because we cannot point to a scar, a wound, a test that proves this is real?
Just wanted to start this. We often say take your spouses or partners with you to appts., let them hear it for themselves. But what are we saying about it all?

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

HOW DO WE DEAL WITH SPOUSES AND OTHERS

Post by jan3213 »

It's Jan
First of all, I want to say I have a wonderful husband who has gone to my neuro with me numerous times and has walked the floor with me, drawn hot baths for me and has been there for me many times over the past 20 years. It's been a long haul for both of us. Now, my RLS is getting much worse. I get little sleep (3-4 hours), I have more pain. Becat is right. RLS sufferers cannot just assume that spouses or others know how we feel, even if they have been around for the long haul. I have to remind my husband, and when I do, he rubs my back, fills the tub with warm water for me, gets the heating pad, and just loves me. Sometimes life gets in the way and spouses and others, even though they love us, have other things on their minds. We just have to remind them that we are in pain. We can't expect others to read our minds.

Jan
No one is alone who had friends.

bradyferguson
Posts: 74
Joined: Tue Sep 21, 2004 1:29 pm

Post by bradyferguson »

bye
Last edited by bradyferguson on Fri Mar 18, 2005 12:21 pm, edited 1 time in total.

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hey, all--

Important topic. I hope that others will respond... or at least get to thinking about this issue.

My overall health and quality of life is less affected than those who have commented so far, so my situation with my husband is somewhat different. However, from discussing family life with folks here, and thinking about other members' comments in the past about the support/understanding of their family/spouses (and my experience with my own), I can see that there are probably ways I can help my husband and sons.

I'll admit, I'm a lot like Becat... my normal inclination is to "suck it up" in silence. I'm tough, I can get along, my problems shouldn't have to impact all our lives. I've "managed" through other tough problems, and I normally figure I can do the same with pretty much anything that comes.

Unfortunately, IF my RLS continues to progress (and especially God forbid at the rate it currently seems to be worsening! :( ), there may WELL come a time when I CAN'T get along without help, and where my problems could be a very OBVIOUS impact on my marriage and family life... no matter how "tough" I try to be.

My decision just recently has been that I actually OWE it to my hubby (love of my life since we were just teenagers) and sons to start cluing them in NOW, while it's not SO horrid but IS nearly constant. I can't just ASS-U-ME that they know that I do WANT to sit and watch the end of the ballgame with them, I do WANT to listen to one more CD, I do WANT to relax and enjoy the afterglow of a nice evening out while we're driving home. I can't help it that I really cannot do/enjoy those things as I'd like to... but I CAN try to help them UNDERSTAND WHY!

So, I've been just being a hair more open and direct about my RLS. If my feet are driving me nuts, and I can't stand to sit by the TV and need to go to bed (because I am blessed that bed is better than sitting still) , I have been saying that specifically to my husband. If I slept well for as long as it lasted, but couldn't go back to sleep because of my RLS, I've been saying that, too. No whining, no big deal made... just stating the facts. And I can see that the frequency of those facts repeating (when a lot of the past time, I know he's probably thought "no news is good news", but that wasn't always true) is making an impact.

I have a really wonderful and protective and helpful husband, and it's funny, because I think that's one reason I don't tell him every little ailment or issue. He worries. He's used to me being healthy and capable and pretty much irrepressible in my own way... so anything that has the potential to change that, worries him. He has always felt he's able to take care of me, but I think it's also a blessing to him that he knows he doesn't HAVE to most of the time. He knows I'm a fighter, a survivor, someone with good sense and pretty much good judgement. He admires that, and it makes him feel I'm safe even when he's not there (a lot of the time because of a demanding job) to look after me.

But I know now, after a period of mild personal grieving over my RLS when it worsened and I realized the potential effects to my (and OUR) life, that I HAVE to allow him to "get it" now, while it's still mostly a frustration, while I still sleep, while I can still gut it out through an episode of CSI (did that with him last night) once in a while with him to please him. IF I were to suffer in silence until I couldn't stand it any more... my normal inclination... what a SHOCK to him to perhaps have our whole lives turned upside down by something he's still thinking of as "Sara's tired feet thing".

So, I am not obsessing about it... or driving him nuts with it... but I THINK he's beginning to see that this is somthing that's progressing with me, and may be a real problem down the road. Whatever comes, we'll figure out what we can do together. But I need to (sorry, Becat, I'm gonna borrow this one, too, like Jan always does:wink: ) give him the CHANCE to occasionally row the boat for me.

I think I'm even going to ask for our couch moved in so I can try laying down instead of sitting if he wants me to stay up later than I should. :lol: It's gotta be an improvement on the camp chairs we're currently using (during construction of our house).

There's no shame in asking someone who really loves you to help you when you need help. And I think it's only fair to give mine some warning that even if I don't need much now, I might need more later. We're both the kind of people who want to "know the worst, and be happily surprised by a better outcome". Might not be the best way for another couple, but I'm happy that I'm being frank with my husband about this now.

I guess the best news is that even some of us who maybe didn't end up thinking we handled it well have found that a loving spouse will do their best to catch up once they DO understand. :D Hugs to all, and all the sweet spouses out there living this right along with us!

Sara :D

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Sara, it's Jan

Right on, Sara. I've found that the best way to deal with what's happening in our partnership and RLS is not to assume that my husband knows what I need, but to be honest with him, and that's not whining at all!! I've tried the mind reading tactic, and, believe me, it doesn't work!!! Ha! I would want to know if it were him. The marriage vows say "in sickness and in health" and things could be worse, even though some times I have said "please just cut my legs off". He'll just smile and say, "do you REALLY mean that?". Of course, I don't. He's a good guy. We'll just go along. Some days are better, some days are worse. Life is a rollercoaster. I wouldn't want to go on the ride with anyone else!! I think your post was excellent!!! You and your Jeffrey will be just fine!!!

Jan
No one is alone who had friends.

ViewsAskew
Moderator
Posts: 16287
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

To Sara

Post by ViewsAskew »

Sara, would you please PM me? I would like to talk to you about your post in terms of the RLS topic I am writing.

Thanks,
Ann

TxSongBird
Posts: 56
Joined: Thu Aug 04, 2005 6:33 pm
Location: Plano, Texas

Post by TxSongBird »

Sara I have said that same thing to DH and DS in my times of desperation and I couldn't control the movements of my legs. I have good support from my family and my 18 year old son probably has this condition also along with so many other health issues from being born at 27 weeks.

Donna
Donna

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

Post by ksxroads »

This is a good topic, especially since I have been so focused on ME & RLS. Hazel with headache

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

It's Jan

I'm just reading past posts and I can't believe what I wrote almost a year ago! GEEZE! How times have changed! What a Pollyanna I was.

Since that post, my life and health took a nose dive. And my husband and family didn't go along for the ride.

I had a horrible winter. My immune system went nuts; diagnosed with fibro; then, hmmmmmmm, maybe NOT fibro. Sick all the time. RLS going nuts. Had to fire neurologist of 15+ years because of various reasons. Finally, in the spring, major bloodwork turned up what MAY be the problems: RA.

Here's the part I want to discuss. My husband, who had (I thought) always been supportive, suddenly wasn't. Well, maybe not THAT suddenly. I was too sick to notice the changes.

He started saying I was angry all the time. I talked about pain too much. When I would moan involuntarily, which would happen often (I WAS I PAIN!), I would see an almost disgusted look on his face.

In my early years of RLS, he HAD been the man I described almost a year ago. And, he was until this past winter. I know some of you know how lonely you can be IN a relationship when you feel as if your partner doesn't WANT to understand what you're going through, and not only doesn't WANT to understand, but doesn't even want to TALK about it.

I'm naturally worried about what could happen if it IS RA and he doesn't want me to talk to him about it? Isn't that what a marriage is? You share the good and bad. If I can't talk to him, who can I talk to.

And, all of this, coupled with worsening RLS, makes the condition even worse because now we're not even sharing the same bed--I can't sleep because of the pain and the pain makes my RLS worse, etc., etc., etc.

Now, it's August. My first appointment with a rheumatologist is September 20 and FINALLY we're talking about what's wrong, or could be, wrong with me. Its been a very, very rough year. I've considered leaving, but where would I go? I've been on medication that has made me depressed, gain 50 lbs., have panic attacks, none of which has helped the situation. Now, I'm off any of that BAD stuff, I've lost 40 of the 50 lbs. and we're finally back on track.

These horrible syndromes/diseases can wreck havoc on a relatonship--everyone always said ours was one of the best they had ever seen. Now that I have "new eyes", as Becat says, seeing more clearly with less medication--and now that he is LISTENING more, we're going to make it. But, it's tough. And, at the root of all this evil, is RLS.

So, it not only affects me, it affects my husband, my family, my friends (some of which I no longer have).

I look back at what I wrote and I have to apologise to some of you. I sounded so full of it. I had all the answers. Well, I didn't. But, I'm making it and so will all of you. Somehow!

God bless you.
Jannie
No one is alone who had friends.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

((((((((hugs))))))

Post by becat »

((((((Jan))))))
OOO darling, No apologies here....You know better.
I like to think that some of our post are thinking out loud and some are just trying to find those new eyes.
Somewhere buried in all these words, we are all trying to get to the heart of things. We can find someone else that has felt the same way and maybe an answer or too.
Can't we all look back at our post and say, whewwwww, glad I'm not there anymore. That's what makes this all great. We said the same things newbies say when they get here. BUT ......BUT with a little time and effort we find ourselves making progress.
It's all apart of the sharing and I don't think it's stupid I think it's brave and helpful.......You have been brave about sharing and helpful to many here.
No apologies....Ok?
And yeah about you and the hubby. I'm so glad things are going well.....
I'm glad your here.
Hugs and a moon, in the woods..........

cornelia

Post by cornelia »

Hi Jan,

thank you for sharing the story of your winter and problems with your husband and family as regards to health issues. It isn't easy to do that, I think.
I have always thought and still do that when you don't have an understanding partner, you are better of on your own, because that probably provides less stress in the end. And stress is one of our worst enemies.
But if you can make it together it will strengthen the relationship, I am sure of that. So Jan, I so much hope that the two of you will survive together, I really do.
Yes, marriage is for better and worse. However I think it it very hard on partners to live with someone who has any chronic disorder and that should be taken into account. I am thinking what I would do in a case like yours. I probably would try to find some professional help. I talked to a therapeut for some time when I had a hard time getting to terms with this RLS and having to quit my job. It helped. I have learned how to discipline my mind, to live now and not even think of this afternoon or tonight. I have to admit though that when RLS is very bad, this just doesn't work, then still RLS takes over. I find that scary, being not in control.

Jan, I am thinking of you.

Corrie

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

It is difficult to explain to spouse or family or friends why at times I feel such a deep emptiness. RLS has a way of keeping one from being in touch with their inner self. It seems I have disregarded the ability to do that when I have gone through a long period of RLS flare up. I find myself performing monotonous repetitions. I am aware of this and feel trapped. Uptight Wound too tight.

I felt as if I was becoming non-productive and I sense that my personal relationships with this world failing as well. My outer mirror was projecting my own irrational thoughts back to me. I felt like an emotional wreck and find myself not a joy to be around. Which is not good when I am always with myself. *big Grin*

It is difficult to explain to them that lately I really felt such a deep emptiness. It felt as if all losses I had ever experienced were combined into one deep hole in my heart. The loss of ability to think clearly, the loss of physcial ability to perform a minor task, the ability to kid and joke around, the loss of my dog of 13 years, the loss of my grandchildren whose mother will not allow our family to see them, the death of a friend I had given up talking to as she lived deep inside her own pain.

As a mother, wife it always seems that nurturing is the only gift I have. I can allow a set amount of time for physical problems, but then I have to get over it! This stereotype prevents me from fully releasing my feelings.

Something miraculous had to happen. It did. I remember to listen to my heart. It is amazing what the simple act of acknowledging the good within can do for a person. I am not RLS.

Now I profess to be spiritual, and the circle has brought me back to the place were there is a need to re-evaluate how I see things. So I will just experience the deep unsettling grief, do the physical actions of smudging, let it go and take the time to add forward thoughts of God wants me to be thankful for what I have, and what I need, and to know that what I want is not necessary to go forward. I will focus on not allowing disparing thoughts and lonliness to drift inward and to refuse to allow a shell of bitterness to build... and give me the strength to speak with words that will help them understand. And the inner strength to not lose sight of who I truly am no matter what the world reflects back to me.

Lately I have lost that ability to be alone and not feel lonely. What I want is my special people around me at all times! Then I remember they are there are always, as I carry them in my heart.

((((((((((BIG HUG))))))))))))) It is so much easier at times to talk with other RLS, than with family and friends.

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

It's Jan (again)

First of all, I would like to thank you, Corrie, for your heart-felt response to my post.

What I wrote was a culmination of an eight month "battle", not of my accepting RLS (which I have had forever), but of my accepting everthing else in additon TO the RLS. And, I wrote this post in hopes that someone would see, if they were in the same place I have been, that there IS hope.

I belive I wrote somewhere else on this board that sometimes our loved ones don't have the emotional capacity to "accept" the difference they are seeing in us--it takes them, in all fairness, just as long to accept the difference in us and it takes US to accept what's going in with our own bodies.

I'm fortunate in that my family is a loving family and we have ALL turned the "corner", so to speak. But, as you as you see, it has been a long, hard process. And, you are right, Corrie, when you say that it can't be easy for a spouse to live with some one with a chronic disorder. I've been able to come off of some of my medication, and we know how medication can effect us (or at least it can effect some people) in such a way that you may be more emotional, more sensitive, and not yourself.

I liked what you said too, ksxroads, when you spoke of feeling all of the losses of your life so intensely and how you felt non-productive. Again, I had those feelings, and I attribute some of them to medication.

But, I have had to come to terms with the fact that other things are happening and my disappointment and worry were projected onto my family.

Now, a I said, I am seeing with "new eyes". I don't blame everything on my husband, though it may sound as it I did. Oh, he could have been more sensitive at times and so could my adult children. However, they have shown a tremendous amount of love toward me. And, Corrie, we are going to make it.

Now, I have hope. And, I have a family who I know loves me just the way I am and the way I will be. And, most importantly, I'm finding ME again. I'm not just a person with RLS. I'm person who happens to have RLS.

I, too, am so grateful for this place. For the friends I've made and for them allowing me to vent--to come here and speak of things I could not have spoken of to others before. Sometimes you have to be deep in the woods for awhile before you can see the sunshine again.

Jan
No one is alone who had friends.

ViewsAskew
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Post by ViewsAskew »

Thank you so much, all of you, for being here and sharing your feelings, thoughts, hopes and dreams. Through adversity can come growth and postitive change, as witnessed by all of you. When we are in it, it can be hard to see how things are changing or that there is a way out. We can choose to ignore the opportunity to change and embrace that which is new and different or we can choose to accept it and move through it as best we can. You all are testament to the benefits of acceptance and the power of truth and love. I'm am honored to be part of such a group.

Ann

cornelia

Post by cornelia »

Jan, you sound better today. I am sure you and your family are going to make it!

Take care
Corrie

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