Relationship stress

[lwatts]

My wife has Lupus and Addison's disease (just recently diagnosed, as if Lupus wasn't enough). Lately things have been pretty bad for us, the Addison's causes her to be more fatigued and testy and unfortunatley many times I don't just let it go... which causes us to argue. Her health seems to be gradually improving with the medications she is on but it is a very slow process. The point of my post is that I would like to know if anyone could recommend some relationship books, videos, whatever related to the topic of Lupus and/or Addison's and advice on how everyone can deal.

Also, part of my question is for the women that suffer from Lupus: I don't want to sound like a pig or anything but you can probably tell what topic I'm about to bring up... SEX, affection, etc. Don't think that I expect it all of the time or even as often as a normal 29 year old couple would, but I would like advice on how I can express my wishes without her automatically taking offense and turning it into a negative conversation. I would just like her to know how much I desire her without her feeling like I am trying to pressure her into anything but when I bring it up she gets so defensive. Sometimes I want to just leave her alone about it but I'm afraid she would accept that and we would have no physical relationship at all.

I hope everyone can understand where I am coming from and not think ill of my inquiry but I would just like some advice on how you would/do approach this topic in your own relationships. I've seen some of the posts by women about how they treat their husbands and I just wonder what I am doing wrong that I do not deserve the same treatment. Thanks in advance for any advice.

[helloos]

Hi Larry.

First nice to meet you.

Second don't feel offensive or misunderstood. It is a good thing that you have the courage to write what you did as many must feel the same way but wouldn't express it. Also, you asking for help is the first step to a better relationship. There is no shame there. You sound like you love your wife a lot and that is wonderful for her to have someone as supportive as you.

I don't think that you are unreasonable at all for bringing up that subject. I can tell you from a point of view of myself. It is personal but I think you broke that ice with your thoughts and feelings. I was just diagnosed with Lupus about 5 months ago. It has taken a toll on me. As a person, I am not the person I once was and that takes a lot to get used to. Believe me when I say it. A lot. I was the type of person that would be on the go all the time. I kept everyone together socially, the family, the friends, etc. always having plans, always having a spic and span house, always keeping up with the kids, just living to the fullest. Then the symptoms of Lupus started kicking in about a year ago. Fevers, skin changes, swollen glands, pain...etc...etc..... First they thought cancer, great. Wasn't that thank the Lord, then AIDs, wasn't that...etc...etc... between all the doctors visits and feeling helpless and not being myself, it is a miracle I was not committed in the pshc ward. I worry about myself, if they diagnosed me right, etc. I worry about my husband, do I seem less appealing to him because most of the time after work, I am so tired, that I collapse in bed for the night. Sometimes in so much pain, that I don't even want to talk. It by no means is me saying I have lost interest. It is my body. Things just are not back to normal yet. It is very hard. These changes within myself are destroying myself. I struggle daily with negative thoughts, discouraged with the pain, discouraged that I can't do something that I want because my mind does, but my body doesn't allow it.

So the romance part. Yes, it has been what I would like to say "temporarily misplaced". My husband is very understanding that I do not feel good. He respects that. As it appears you are the same way. We talked about things and he told me that we should take it day by day. The thing is for me, the night time is the worst ....as the day goes on from work, it really takes its toll on me, that by the time I get home ....GOODNIGHT TO THE BODY. So, we figure, ok, we liked our time together, romantically. So, we decided that not only take it day by day, but to maybe just switch the night time to the day time or a better time. Also, we had a tub with jets installed a few years ago.... this helps me with the warm water and the jets for the pain and relaxes me and we both sit in it with candlese, etc.

It does take a huge effort to come to terms with this nasty disease and how it is destroying your life and your partners. There are a lot of good books out there, but there are a lot of doctors out there too for these kinds of things. For instance, your wife could be seeing a counselor for her chronic illness and you too could be seeing someone to help you along too. It is not only her that hurts it is you too. I see it in my husband's eyes too.

I think that talking honestly with your wife will help a lot and no it wont' make you sound like you just want one thing. It sounds as if you are there for your wife constantly, as my hubby is for me, so I wouldn't think that at all. I just tell him, MORE ROMANCE PLEASE...MORE CANDLES, MORE FLOWERS, MORE MUSIC, MORE SURPISES, MORE CARDS..... i think you get the point. Talk. It should be a comfortable topic. Not a topic of sex, but a topic of romance. You love your wife and you want to be romantic but are afraid how she is feeling. I don't think that will start an argument. A good rub down too. Many ways to bring the subject up calmly and romanticly.

I hope I didn't talk in rumbles. Maybe others have specific books that can help you. I am reading a book that is manage your pain before it manages you. I find it to be helpful so far. I would suggest going to the library in the self help section and read a few and see which ones appeal to you. Everyone is different so what one likes one may not.

Good luck .

[lwatts]

Thank you for the nice reply. Many of the things you mentioned remind me of the way my wife used to be, on the go, very social, etc. The fact that she can't do those things as much of course depresses her which adds to complications.

I have tried to convince my wife to change our time to anytime she feels good and the kids are away, similar to what you mentioned you and your husband do, of course this sometimes takes the romance out of it. It works sometimes, lately everything has just been so crazy though with the holidays, the new thing (Addison's), I've recently changed jobs, etc. Just a lot of life getting in the way. We have talked about seeing counselors together and seperate to help deal with everything and I am all for this idea, it could only help us. Anyway, thanks again. Talk to you later.

[macfamily53]

Dear Larry

I just want to say that i think it is so col thta you woudl write this post first of all. You no doubt care about your wife very much so but you are talking about it wiht soemone and i think thta si very important defiantely. My husband is one to keep things in until he explodes basically. That is not good either. he is workinga lot because i cannot am not able to work at all. I feel bad because of that even though he says that my helath is first and foremost i see the tole it take on him to have to work with a family of 4 and try to support them. Sorry i did not mean to get off on myself i just wanted to tell you that you are ehading in the right direction with you an dyour wife. I am surethings will be okay because you both care to much for it not to be. Well i just want to say that my thoughts and arayers are with you both. Take care and i hope your wife keeps getting better.

Tammy

[gretchenb5]

Hi Larry,

I agree with everyone -- you are on the right track. I think we sometimes forget, especially when the diagnosis is new (it's still new with me, too -- just diagnosed in May), that this chronic illness affects more than just us, and your wife has 2 major chronic illnesses to deal with! PLUS it sounds like both your lives have been recently turned upside down by other "typical" life stressors -- new job, holidays, kids, etc. You both have LOTS going on, and she's still getting used to her body not being the same one she's been used to for 29 years. It's hard to say how long it will take her -- or you -- to get used to this, just like it's hard to say which meds will help the most, what side effects might be triggered, etc. There are a lot of unknowns, and that in itself is scary.

I think possibly seeking out individual or marriage therapy is a great idea, but keep in mind that this would be one more thing for her to do. If she's not ready yet, you might consider going alone if only to have someone to discuss these issues with yourself.

That said, I think just about all of us here would agree that intimacy and sex are important parts of our romantic relationships. But because of the ways this disease impacts us (and she may still be figuring out how it is impacting her!), the fatigue, the meds, the pain may not put us in the mood or make us feel desireable. Think about it in terms of the flu -- when you are that sick and feel that crummy yourself, being close with someone you usually find very desireable may not be very appealing. That's probably some of what she is going through.

So... what can you do? Well, if she's having a hard time talking about it, I'd suggest starting out by writing her a letter. Tell her pretty much what you've told us -- that you love her, you know she's going through a lot -- much more than you can even imagine, that you're trying to learn about these diseases, that you still find her desireable, and that you want to be close to her. Let her know that YOU know she's not always going to be in the mood when you are, but perhaps you can have a little signal -- something just the two of you know about -- that she can leave for you so you know when she's feeling "good". It might be a silly magnet that she puts on the refrigerator ONLY then, or some secret code word or phrase she'll use ONLY then. Just having that little "code" will bring some intimacy in itself.

You could also try something I've heard some of the other ladies "talk" about here -- have her use a number system so you know how she's feeling that day. For example, if she's rating how she's feeling on a scale of 1 to 10 (with 10 being the best), she might be a 5 in the morning, but a 2 at night. That's a good way too for you to know how much to help her out without her having to ask. But you can use that scale for intimacy, too -- and I'm not just talking about sex. You'd know that if she was an 8, she might be up for "some" things, but if she's a 5, she might still be up for being held (that would have to be a discussion you'd have). My husband has gotten very good at knowing that I really enjoy being held and having my hands rubbed in bed at the end of the day -- we get to be close a LOT, even if I'm not up to being sexual. At least we maintain that closeness (****, I think the closeness has even improved!).

Anyway, there are a lot of little things you can do or try, but it all starts with communication. And if she's not quite ready to really talk about things, you can start the ball rolling by writing to her and using secret codes yourself.

Good luck -- I think you're doing a great thing by learning about everything she's going through.

gretchen style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif

[alobreto]

Hi, Larry! style_emoticons/<#EMO_DIR#>/wink.gif
You are a gem to ask this question.

I can relate with not having the spontaneity that used to be possible. Hubby and I have to plan ahead because I need more pain control for intimacy. It is difficult for me to even lie down because of joint problems. Since we know this, we plan ahead and I take extra medicine an hour or so ahead ot time.

Just because the spontaneity is gone doesn't mean that it isn't worth the effort. I think about the couples with erectile dysfunction problems who have to plan ahead. It's worth the effort for them or viagra sales wouldn't be off the charts!

I agree that counselling would be helpful. I also think the Dr. Laura Schlessinger books on relationships would be a good read if your wife wouldn't object to reading them. The Care and Feeding of Husbands is excellent!

I hope things can improve for you and wifey soon!
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[lwatts]

Thank you everyone for the great advice. The thing that makes it really hard Gretchen is that my wife is sort of acting like a turtle and hiding in her shell, becoming even less affectionate than she was before the Addisons. This makes it very hard, I think when I tell her that I want her to be more affectionate she automatically assumes that I mean sex even though I tell her exactly what I mean. Like how I wish she would hug me more or kiss me for no reason at all other than she wants to, realizing that she is sore and tired I tell her she could even tell me to come to her, I wouldn't mind, just her thinking about wanting a hug, kiss, touch from me would make me feel great. The letter idea is great and I think I will give it a try and I may head up to Borders and checkout the Dr. Laura books. It's funny that you mentioned that Angela because for Christmas from my wife's side of the family we received 4 or 5 self help, relationship, financial planning, etc books. I guess everyone can tell we are having some stressful times.

In the 8 years we have been together it seems like we are always having something causing stressful times, I guess the important thing is that we love each other and keep dealing with them as the come up.

[alobreto]

Hi, again! style_emoticons/<#EMO_DIR#>/wink.gif
Something that has worked for us in the past when busy lives tended to push intimacy and/or affection to the back burner is:

Providing your partner with handwritten coupons good for (fill in the blank). 2 FREE hugs, or kisses, or a half hour of cuddling.

This is a gift that my husband and I both love and appreciate. It takes the pressure off of having to be able to 'perform' when your joints prevent doing some of the things that most folks take for granted, and it can put some 'pizazz' back in when other things seem to take precedence.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif