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widebody
08-01-2009, 02:57 PM
Okay, I know it's mostly women on this board, which I think is a good thing.

Because I need help dealing w/my wife. For the most part, she's great, but the last few days she's been really difficult to deal with -- drinking a lot (imo, at least) which led me to very gently ask her this morning if there was anything I could do, which then touched off this huge discussion (on and off all day) about how she can't stand the 'negative energy' around me. I've told her that I'm doing my best to not be negative (and really, it's more sad than negative - there's a big difference) but it's kind of hard with the way my life has fallen apart in the last year. (lost job, had very very rough relationship patch when she decided she was just going to say whatever the hell she thought/felt regardless of the consequences, got new job at huge pay cut and accompanied by empty promises, blah blah blah. Plus she's totally career-focused AND in school almost full-time, so there's little time/energy left for me or anyone else - our friends are dropping like flies because we never do anything). Further, she said several months ago that sex during the week was out of the question because she is just too tired, but now there's no (or very little) sex on weekends.

Anyway, all that aside. She says she's 'saturated' with the negative energy and can't take any more. But as noted above, I'm more sad than negative -- it's hard to see my body wasting away, not to be able to go in the sun, to worry about whether I'll be able to keep my job, not having a sex life anymore, yada yada. I try my best to not be critical or negative, but frankly, it's hard, especially when I hear that from her. As I pointed out (gently) today, I didn't ask for this disease, I didn't DO anything to get it, I didn't deserve it (as far as I know;) ) and her witholding sex and just generally being a bitch because she doesn't like the 'negative energy' is really getting old.

Sorry for the rant. Just writing it down does help some...

thanks all, and happy saturday!

Brian

Angel Oliver
08-01-2009, 03:25 PM
Hi Brian,

First of all thank you for sharing your story with us. After reading it,the only ''negative energy' here is all coming from your wife im sorry to say. She should be standing by your side and loving you no matter what. If anything it should be YOU too tired. I think she is doing some of that reverse physcology on you and its actually her with the problem here and NOT YOU!

I know another or any discussion is going to end up with her saying you are negative,when like you said,you are actually very sad.BUT you need to remember,you are sick and maybe she does not know how to handle your illness,maybe be a little afraid of whats happening to you.I am making no excuses here for her. For her to suddenly stop being intimate with you must make you feel like you are losing everything.Like you said you did NOT ask to be sick.Please keep reminding her of that and i think its cruel of her to treat you this way. Unfortunately,we all at some point may get sick..so who is to say she wont,i pray she doesnt but what i mean to say is, what if it was the other way round? She was sick? You were acting as she is now? How would she react?
I really hope somehow this relationship works out with more talking.I do understand you say she is nice,but this is a big issue to be sorted and i dont like how she says about negative energy.How would she cope in your shoes?
I hope i do not offend either of you with my words.Im just me reading a post.I know if that was me id be so upset.
Please know we are all here for you and im so sorry this is going on.But i also hope its sorted soon so you can relax.You have been through enough.

love n hugs
Amanda.xxxxx

WantItGone
08-01-2009, 06:11 PM
Okay, I know it's mostly women on this board, which I think is a good thing.

Because I need help dealing w/my wife. For the most part, she's great, but the last few days she's been really difficult to deal with -- drinking a lot (imo, at least) which led me to very gently ask her this morning if there was anything I could do, which then touched off this huge discussion (on and off all day) about how she can't stand the 'negative energy' around me. I've told her that I'm doing my best to not be negative (and really, it's more sad than negative - there's a big difference) but it's kind of hard with the way my life has fallen apart in the last year. (lost job, had very very rough relationship patch when she decided she was just going to say whatever the hell she thought/felt regardless of the consequences, got new job at huge pay cut and accompanied by empty promises, blah blah blah. Plus she's totally career-focused AND in school almost full-time, so there's little time/energy left for me or anyone else - our friends are dropping like flies because we never do anything). Further, she said several months ago that sex during the week was out of the question because she is just too tired, but now there's no (or very little) sex on weekends.

Anyway, all that aside. She says she's 'saturated' with the negative energy and can't take any more. But as noted above, I'm more sad than negative -- it's hard to see my body wasting away, not to be able to go in the sun, to worry about whether I'll be able to keep my job, not having a sex life anymore, yada yada. I try my best to not be critical or negative, but frankly, it's hard, especially when I hear that from her. As I pointed out (gently) today, I didn't ask for this disease, I didn't DO anything to get it, I didn't deserve it (as far as I know;) ) and her witholding sex and just generally being a bitch because she doesn't like the 'negative energy' is really getting old.

Sorry for the rant. Just writing it down does help some...

thanks all, and happy saturday!

Brian

Hi Brian,

Sorry thinks are kinda funky right now. In my opinion, it sounds like your wife isn't allowing you to help her through this tough time. You sound supportive so it's sad that she isn't taking advantage of YOU. I definitely have a supportive husband and know that like you, he didn't ask for this disease. I really let him help. I express how I'm feeling when I'm down, emotionally and/or physically. I would talk to her about this and let her know that you only want to make things better, not worse. Unless I was physically in pain, that's the only way I would hold out on sex w/my husband. That's understandable I'm sure you would agree. I honestly think that things like divorce and infidelity occur when communication is non existent. You guys have to talk about it. You have to let her know how you're feeling. Because even though we have this crippling disease, it's not your fault. You guys should be in this together. I'm sorry also but I am NEVER too tired for sex. Lol! Sex is stress relief! Just try and talk to her and try to be patient. Let her know you are here for her, and not her enemy. Hope everything works out for you two!

debbie-b
08-01-2009, 06:48 PM
Hi Brian,

Sorry to hear, that your wife and you have hit a rough patch, maybe that's all it is, a rough patch. Does she have stress at work? Keep talking to her and let her know, that you would much rather feel well, but it is very tough to be happy and positive, when you are in pain and your entire body is messing with you and your brain. And I understand, that it is not negative energy, but you just dragging butt, BIG TIME. Sometimes I am just fed up with my daily pain and it is hard that day to smile. I hope she will understand and be by your side, like my husband is on mine.

Debbie

Jewelz
08-01-2009, 07:39 PM
I'm new around here... nice to meet cha!

You sound like a really sweet guy. Maybe you could find some counseling for the two of you? And maybe go on your own the first couple of times to explain your illness and whats been happening AND make sure this is the right counselor and what you want to do - Then bring it up to your wife and tell her how important she is to you and that you want to make things better (never mind it's more her issue than yours) just say you want to make things better and you think counseling could be the right thing. Then let her know you checked them out and already started "discussing your negative energy" (again, just put it that way to her....) and that you really think this is the right thing to do for your marriage and you love her so much and how she's worth it yadayada...

Just an idea. The others are right saying that she should be supporting you during this difficult time. I'm sorry you are having to go through this.

Hugs
Jewelz

Grime
08-01-2009, 08:32 PM
Brian,
Quit being sad about Lupus. This just makes it worse. I have it and you have it. We didn't ask for it so now kick the s in the butt. If I feel like a nap I take one, if I feel like sailing I go sailing. Keep telling yourself that you are going to fight this mess. Never anything neg. I've got a wife that supports me and a great bunch of friends.

The more I do what I love the better I feel. I'll make the small changes like putting on sunscreen and ware a hat but that's it.


Good luck on the wife thing. Can't advise you on this one other than there is more there than meets the eye.

jcg196
08-01-2009, 08:40 PM
Hi Brian,

I am sorry to hear that you are having trouble with your wife, it can be very hard for people to understand our disease and what it does to us.

First let me say that I think the negative energy is an excuse or at least sounds like one to me. Maybe you guys should have a sit down and find out what the real problem is....She could be holding stuff in and just saying ur energy as a cover up for what the real problem is.

Also make sure you tell her how u are feeling, that u are frustrated and sad. Not negative however frustrated and sad emotions aren't exactly postiive...if u know what I mean

I can say being married myself when u do have sit down and ask her to express her feelings try not to interupt and try not to fix the problem. Just be there and listen. I find that when me and my husband talk we are so busy trying to make our points that no one gets heard. So now when me and my husband talk we try not interupt as hard as it is.

I wish you all the best of luck and I hope u feel better
xoxoox neL

scubagramplit
08-02-2009, 06:50 AM
Hello Brian,
Reading your post your wife refers to your "negative energy", I have to say that whith what I have been through with this nasty disease I would not call it negative energy or just simply a mind over matter thing, and I thank God daily for being blessed with a wonderfull caring wife who understands. We all have different symptoms and are afected differently by this and I can relate when you feel so darn fatigued that you do not even want to get up out of a chair yet can't sleep and feel like you are tired all the time, been there, it sucks! Yeah it is hard an my family but they do understand and we all know that we did not ask for this. Explain how you are feeling to your doctor and possibly he can change up your meds to help. I hope this helps, good luck and God Bless. Jim.

BettyBoop
08-02-2009, 01:12 PM
Hi Brian...

Sorry to hear about the ruff time with your wife. If you are feeling very sad, you might want to discuss things with your doc. He may want to change or put you on an anti-depressant. I know I take Cymbalta and it really helps me.

Good luck and God Bless,

Grime
08-02-2009, 01:36 PM
I'd stay away for the anti-depressants. Doctors love to put you on all kinds of crap.
Like I said there is more going on than meets the eye. Sit down and have an open talk with her.

Brian,
What do you like to do??????? Go have some fun. That's the best cure.

widebody
08-02-2009, 01:42 PM
Thanks to all of you for the great messages and support. David, I like your 'kick it in the butt' attitude!

Things got better last nite - I gathered up enough energy to make a good dinner, and then went out on my own. She tells me I have to make my own fun (cuz she doesn't have time), so that's what I'm doing. It's a little weird - I've never been the 'hang out w/the guys' kind of guy (at least not since college), but I'm learning over again.
But anyway, after I got home she was a lot more 'normal.'

Wantitgone: I keep trying to tell her that sex is good stress relief, but not making much progress...the sad thing is how much the frequency has declined since she went back to school. But she fought me tooth and nail when I suggested a few months ago that she cut back on her class schedule and take longer to get her degree. Now she's saying she'll cut back because of the lupus, but I'm keeping my mouth shut - I'm not about to push her one way or the other.

We were going to counseling a while back, things got a lot better so we (really SHE) stopped going but now she's going on her own and says she'll go with me to my therapist, who's been wanting to talk to her for months (until recently she flat refused to see my therapist). So we'll see...

Thanks again for the great support- it means a lot to me!

Grime
08-02-2009, 04:15 PM
Good for you. Now keep it up. Just go have fun. I'm like you not one of them hang out with the guys but I have a bunch of sailing buddies now to pass the time with.

I've found that I am not as tired and feel a whole lot better.

mountaindreamer
08-02-2009, 08:29 PM
hi brian,

so sorry to hear about the stress your marriage is presently withstanding.... I hope "normal" returns to your life.

you received a log of very good advice. I am inclined to agree with Angel....sounds like your wife is trying to transfer her guilt to you. With her in school, she is sharing experiences with "healthy/normal" people, and she might be feeling resentful that lupus has changed your lives. This might make her feel guilty, and she is trying to transfer this to you.....that is wrong of her and very insensitive.

so glad you are going out with friends....i am certain that they won't feel your energy is negative....they will be thrilled to enjoy your company. Sorry is it not your wife, but that is her issue, you take care of you.

Hopefully she will visit your therapist, I feel sure that your therapist will be able to decipher exactly what is going on with her.

I don't mean to be passing judgement on your wife, i know that it must be extremely difficult for our spouse to accept the life changes that lupus brings, but like Angel said, your wife should try to put herself in your place, and decide what she would hope that you do for her....

take care, enjoy your friends, and hope fo peace.

gina
08-03-2009, 07:02 AM
Brian
i have gone thru what your going thru, but my marriage ended because of it.

my best advice is first make sure she understand what is going on with you. make her go to dr. visit with you and here from the dr. what this causes.

they don't know how to deal with us or understand the disease we have so for some reason they get nasty.

if you love her and she the love of your life. sit her ass down and talk to her until she understands what is going on with you and your life.

than make a choice thats best for you. this disease will never go away and the flares are bad. you need support from family and friends for this. so you need to be with people that can do that for you. not cause you any more stress.

cause stress will make the disease worse just like it does to anybody stress is very bad on our bodies. we need to be able to vent an move on not keep things bottled up inside.

good luck with your talk. don't be like me i ran away an ruin my chance of saving my marriage.

Crabcakes
08-06-2009, 07:57 AM
Wow, your rough relationship must really be bothering you. Hard to tell from one post, but I get that your wife is a bit egocentric, and does not understand what youa re going through. I have Lupus and Sjogren's and my husband has multiple health problems. I willa dmit to getting tired of my husband's moaning and groaning about how his back hurts, or his leg... I think excessive complaining is crazy and non-productive. I have talked to him and aske dhim to STOP asking me how I feel, as I don't the focus of our lives to be pain and complain! I am the one to get discoraged when he does nothing to helo around the house because he feels bad. So, I sort of understand your wife's feelings.

The two of you really need to have a sit down, hear to heart talk. Put on a pot of coffee, and have some snacks, and talk. Set rules: No yelling, no cursing, say what you feel, say what you want, and try to come to some conclusions adn comromises. If you love and care about each other, you can do this. Put everything on the table, without accusing each other of anything.

Drinking is not the answer, and understand, some people just are not strong enough to cope with their spouse's infirmities. Mostly men, I am sorry to say, but many men have left sick wives, because they can't deal with not being the center of their spouse's life. Maybe your wife feels your illness has replaced her as the focal point of your life.

I am sure you can discuss the issues and come to a resolution if you BOTH want it.

Best of luck!

crmj1183
08-06-2009, 11:59 AM
Brian,

I can completely relate to your situation. Im not married but Ive been in and out of relationships, and Lupus is a tough disease and I think sometimes our loved ones dont realize how we really feel. I know its just as tough for them but definitely not tougher. Your wife isnt being supportive as a matter of fact, and I say this respectfully... She is being very selfish. Its not fair to you or the relationship. Maybe you should talk to her Imsure she loves you with all her heart, she probably frustrated as well and sometimes people say things out of anger.


Chriss

lucky7
08-07-2009, 02:09 PM
Hi Brain, i say go buy a book about living with someone who has lupus and if she DOESNT read it, well then, she doesnt have to say any more does she? I believe ACTIONS SPEAK LOUDER than WORDS, so, LISTEN to HER ACTIONS. I am SO SORRY you are going through this. YOU are in my HEART:wub:

dsunshine
08-07-2009, 05:23 PM
Hi Brian
Sorry to hear about your situation with your wife. Thanks for sharing and venting. I hope things get better between you two BUT right now you need support. Lupus takes over not just your body but your mind and I think a lot of people in our lives turn on us as they can't see the hurt or mental blocks we encounter. I will not speak about your wife as I don't know her nor you but I know Lupus and it's a BITCH to say the least. Things will get better once you start to feel better and don't think of yourself wasting away...think of yourself as morphin into a better you!!!
I wish you health and remission