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Delphinia981
05-27-2009, 09:20 PM
Hello all.

My husband of five years, Bill, is having a very hard time coming to terms with my Lupus/RA diagnosis. Ever since I came home with the positive labs, he's treated me like a curse on the family. Even before my diagnosis, I had a terrible time taking care of our daughter, Annie (who is 3 going on 30). When he asks how I'm doing on any particular day, I can't lie to him (never could)...and when he hears what he suspects, which is that I feel like death warmed over (on a good day), he huffs and puffs and stomps around like I'm somehow putting him out. The thing is, nothing has changed with me. I feel now like I've felt for five years...just now, we have a name for it. My "bad days" have become "flares." My rheumatologist has all but taken the place of my GP. Otherwise, it's same crap, different day.

His excuse is that he's "frustrated." Well, that's just dandy. GUESS WHAT? I'M FRUSTRATED AND IN PAIN!! I'm not asking him to hide his feelings, but come on...huffing and puffing, rolling his eyes, and stomping around? GIVE ME A BREAK!! I've tried talking to him about it with no success.

The last few nights, I've been up late on the phone with good friends (most on the West Coast) who are, sadly, more supportive than my husband. Bill actually had the AUDACITY to come to me tonight and say, "the fact that you were up until five in the morning last night was unacceptable." I just stared him down and said, "Yes, I was up until five. Reason being, I was reaching out for the support that I'm NOT GETTING HERE." He, of course, started his pity party and went to bed. I'll be voluntarily sleeping in the office again...for the third night in a row.

Has anyone else had this problem? What do I do? What do I say? Am I asking so much for just a little compassion and sympathy? HELP!!

abbasgirl
05-27-2009, 11:48 PM
My heart is heavy for you. That is unacceptable treatment and if I were you, he'd sleep in the office and I'd sleep in my comfy bed. I don't know what I could tell you that would offer any comfort except that I'll be praying about this. (((Hugs))) Maybe some marriage counseling could help? I'm sure some good advice is coming. This place is full of sweet people that are so helpful.

Marriage sure is a lot of work. My hubby, although supportive, isn't very good at saying what he means to say. And sometimes he'll say all the wrong things and meant nothing of the sort by any of it. We've both read books and focused on learning to understand one another better, but it's a work in progress. Good communication is a must. We've read books by Dr. Gary Chapman that have helped him understand things from his wife's perspective. I was surprised he read them. He likes the way Dr. Chapman writes. He says it's simple and easy for him to understand. Maybe Bill would be interested in reading books like that? If he won't listen to you maybe he'll "listen" to a book? Or a marriage counselor?

I'm so sorry for this added pain you have. It's bad enough to go through day after day with Lupus and RA...but to be made to feel like a curse...that's awful. I'm praying.

froggal
05-28-2009, 01:31 AM
When I first joined WHL, I was feeling pretty much the exact same way. I got some awesome advice on my blog. The thing that helped me the most was taking my husband to the doctor and making him listen as the doctor explained lupus in great detail. His attitude is SO much different now. He still has days that he wishes things were different, but his reactions are nothing like they used to be.

Angel Oliver
05-28-2009, 03:19 AM
Oh i am so sad for you and felt your pain.Your husband maybe is adjusting to this situation,certainly not making an excuse for him here,just thinking the maybes.Maybe he is scared for you and you know some men,dont know how to react to difficult situations,well i think this is him trying to deal with your diagnosis.
I think like Froggal said,ask him if he will come to an appointment with you.Maybe then he will begin to give you support and start acting like a husband instead of your Father.I did giggle....how dare he say that to you...about the time you stayed up being unacceptable.I know some people when they are scared,unsure of an outcome find it so hard to show the correct emotion.
I live with my Mam.All my life she has always been ill.Now i am sick i am stunned at how she behaves towards me.She is viscious with her words at times.I think,all my life i spent looking after her it really hurts.So for you,with your husband who you love,must feel totally let down and under so much pressure.With me,i confronted my Mom.Unfortunately as i live in her house,she used the 'get your own house' card.Oh i feel so unwanted,a burden and sometimes as my diagnosis isnt confirmed a hypochondriac.But with you,your husband,i am praying once you sit him down,confront him with all what you feel,telling him his behavior towards you is UNACCEPTABLE, he will actually start to open up and you will find out why he is acting this way.Of all the times you need support from your loved one,its now.I will send over good strong vibes to you my friend.This will get sorted,but it means you confront the situation first,not nice i know.....but it could make you life a hell of a lot better.As you read posts here,from members, you will see most of us have been through similar situations.Once confronted,it does get better.In my case,well im not married to my Mom lol.
We are always here for you.Hope things begin to ease and this gets sorted.
sending you gentle hugs.
love
Angel.xxxxxxxxxxxx

rob
05-28-2009, 07:26 AM
Hi Carrie,

I'm sorry things are not going well. With my record of train-wreck relationships, I might not be the best person to be giving advice, but I'll try. I would start by being up front with your husband about one very important fact. Stress is a one way sure fire ticket to having a serious flare. Tell your husband that he is causing much of the problem he is complaining about by stressing you out to no end and perpetuating a serious flare. Tell him he needs to knock it off ASAP. He's creating a problem that does not have to be. I'm sorry if my advice doesn't sound very diplomatic, but I have no use for people in my life who complain about how hard MY disease is on THEM, I've heard it all before. Pardon my language-but that attitude is bullpoop. We are the ones who are SICK, not them. People do not realize that they are only making matters worse with their attitude. We get sicker, they get angrier...

As men, we like to fix things-well, your husband cannot fix Lupus, but he can fix how often and how intense your flares are by changing his behavior. And, most men can understand an in-your-face "this is the way it is" talking to. We may not like it, but we will usually listen. My suggestions are only that-suggestions. I hope you can come to an understanding, I know this is an extremely rough situation to be in, because I've been there. Please know that you have done NOTHING wrong, and you deserve to be treated better than this. You know you have many understanding and sympathetic ears here-don't hesitate to talk whenever you need to, we'll listen.

Rob

Bonita
05-28-2009, 07:35 AM
I can sympathise with you because no one understands that some days you are not just mom wife or grandma and that you hurt or do not feel good. It is because they do not see anything physicaly wrong on the outside. My husband has the air conditioner at 68 and when i tell him i am cold he tells me to put a sweater on. so i just go outside to warm up. Bonita

Oluwa
05-28-2009, 08:15 AM
Carrie...Hugs...

I've always felt when men or woman stomp, roll eyes it says alot more of what is on their mind then their words could even say.

To me, gestures of that sort are out of disrespect and not the illness or our exhaustion. There are other ways of expressing disappointment, frustration and etc. To me those are very degrading, belittling and rude, as if one isn't worthy of a respectful conversation.

I also found out the majority of arguments are merely topics and not what the really issues are that lie deep within us. And what couples bicker about isn't what is really gnawing at them.

I think, not taking sides, but being objective...when our spouses, family members say comments like "the fact that you were up until five in the morning last night was unacceptable." is because they don't understand how we can possibly stay up in our condition.Chat up with our friends and then be too exhausted to make dinner. They correlate that with being up all night the cause, I suspect. Without an illness that would be our train of thought too...

Have you explain the spoon theory too him? Has he read any information on Lupus, flares...okay one day, tore down the next?

For me, I find and I've mentioned it...well, okay a gazillion times...that it isn't important that they get it, or understand the disease in its entire emotional and physical state that it causes us...sleepless nights, in bed days. I find if I understand the fact that they don't get it simply because they don't have the illness it makes my life, my thinking easier...lowers my stress a whole lot. Life is better.

As humans we always try to jockey into position to feel validated, especially when we are sick, even with just a cold we expect empathy. But for us it is an everyday sickness and for most humans to extend empathy continuously ..well, it doesn't happen.

Though our disease is in..on our minds 24/7..on those insomnia nights, it isn't on theirs, nor do I expect it to be on my husbands. I don't like it there, in my thoughts and I would not want it in his head 24/7...

As it was mention, communication is key in any relationship, under any circumstances when we bicker, stare each other down, roll eyes isn't the kind of communication any relationship needs or warrants....counseling, books as suggested are great ideas to find respect...

Counseling helps to get what’s on the mind out...maybe his frustrations is out of fear as Angel said or it could me a myriad of things that has nothing to do with your illness.

Or as it was said..bring your husband to your appointments...

Bickering with snippets to one another is only going to aggravate your symptoms.. It is so important to minimize the stress in our lives. Lupus loves it...it thrives on.

Here you will always find empathy, compassion, honesty and understanding...

If your husband doesn't want find a solution to his frustration, it is important you find a calm within yourself...yoga, masseuses, acupuncture, counseling, in a book...vent here, but try not to engage in his ‘game’..his frustration. It will hinder your well being than help.


Head hugs.
Love,
Oluwa

RedHairAngel
05-28-2009, 12:18 PM
Hi there, I unfortunatly do understand totally where you are coming from. I have been "sick" for the last 7 years with no real diagnosis and my husband is fed up with it all. He has been know to spout off to friends and family saying " I picked her to marry because she was the healthy one!" It is like I dashed all his hopes and dreams and this is somehow my fault and he never lets me forget it. This coming from a man who has type 1 diabetes and I have been there every step of the way for him and his illness. After all we did say in our vows We would be there for each other in sickness and in health till death do us part. But I guess that means I stick by him when he is sick but I am not allowed to be sick.

Okay with that out of my system --- To deal with these hurt feelings and emotions I turn to God's promises. There is a thread on here that starts out with Who I am in Christ and I hold on to all His promises in His word. Also, I pray for my husband and I also pray for a soft heart where he is concerned. It does no good for me to get angry at his bad behavior or at least angry at him. It just starts a fight and nobody wins and feelings get hurt. I do let him know his words hurt and drop it from there into Gods lap. I can't fix him but God can. It is so hard for us wifes to let go & let God but when we do our burdens get lighter and we can heal faster. Once I gave it & my husband to God, my husband got a little more supportive but still says and does things that hurts but the hurting doesn't last and are fewer and farther apart.

I am here for you because I feel your pain and anger just don't let it fester to much it can distroy you and your marriage. It hurts I know!

Debbi
Married 21 years and counting.

Bonita
05-28-2009, 04:31 PM
I have done the same thing with my husband is to turn him over to God because i am tired after 43 years of marriage tryoing to change his miserablness and it only got worse since he retired. I have enough to deal with as is Bonita

abbasgirl
05-28-2009, 11:12 PM
More ((((hugs)))) to Bonita, Debbi, Rob, and Angel Oliver.

Froggal, so glad things have improved for you.

Oluwa... I think you're right. That its about something deeper. Most of the time it is.

I'm so sorry for the hurt all of you have gone through and continue to endure. I've put you all on my prayer list to be blessed with lots of love!

rob
05-29-2009, 05:43 AM
Hey there Carrie, just wondering how things are going. I hope all is well, or at least tolerable. Say hello when you can.

Rob

Delphinia981
05-29-2009, 07:40 AM
Hey all...sorry I didn't respond before now. In-laws are en route from NJ, so I've been cleaning like crazy.

Had a long LONG talk with Bill. It went very well...better than expected. I told him that I understood his frustration...but to try and hobble a mile in my shoes. To spend a day struggling to stand upright, with aching joints, barely able to stay awake, a mind that won't focus...and those are the GOOD days. I acknowledged his feelings, and asked that he do the same for me. He did concede that lately, my "good days" have been more numerous than my "bad days" (which I chalk up to a final understanding thanks to my long-overdue diagnosis)...and that he would do all that I can to help. He actually said, "I thought that saying 'I'm sorry' when you were first diagnosed would let you know how I feel about all this."

*facepalm*

But we're going to work more on our communication, and I gave him "permission" to be frustrated...I mean, I know it's going to happen for the both of us...but I told him that he needed to find a new way to deal with it. Projecting his frustration on me was counter-productive, actually made me WORSE (he did not know that stress can contribute to my symptoms), and that I would not tolerate it any more. Flat-out.

So far, so good. We will see how things go. I'm willing to take any crumb I can get!!

Thank you ALL for your stories and support. It's so wonderful knowing that I have a place to vent where everyone "knows my name"...in more ways than one. Y'all are the best!! xoxoxo

dsunshine
05-29-2009, 03:00 PM
So sorry you have to deal with all this on top of flares! I hope everything works out for you both...having such a young beautiful little girl! Have you considered seeing a therapist that you both can go to and talk it out? It might help!

abbasgirl
05-29-2009, 10:49 PM
So glad the talk went that well. I'll be praying the communication keeps on growing.

When my family saw me stressed out enough and the after effects... well, I think the last three ER trips helped them realize how much stress Mom can take! So we're all learning better ways to cope with stress...whether we like it or not. Lol.

I'm so glad Bill listened to you.