Effects on Marriage

[mews]

 ynevar.. Do you write, that was so moving.. you brought me to tears...and then they dried up in a split second!!! I wish I could put on paper how I feel, at least I would be getting it out some how....

Feel Well All
Mary

[dbab]

Y - I think you summed up what a lot of us feel... very beautifully I might add. 
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The context of it of how we push them away.  Yes, I do see that.  I push my husband away I think out of a protection to myself.  For me at least, I have this fear deep down that my weakness will drive him away or that he deserves better.  I think it's a subconscience defense to protect my heart.  I think if we sit and think about it, a few others of us here may be doing the same thing (I certainly don't want to speak for anyone though, I'm just taking a guess here).  We then turn that anger to the person we love the most and in turn it causes so much friction. (I sat back and put myself in my husband's shoes for a minute to evaluate the situation, the anguish of a spouse of a sick person and the stress of that situation in itself... they probably have no one to share these feelings with and it probably eats them up inside as well... and I saw it in such a different light)  This is really detremental to the relationship and we cannot do that.  It will destroy it. 

We cannot push them away because they will get used to it and then we will get upset when they don't ask how we feel,etc.  I know now that I have to take the blame on that.  I'm coming to terms with that.  What I have to work on is communication.  I'm going to do it slowly though because I don't want to overwhelm the relationship with it but it will be a gradual change.  I will be more open to share my feelings, not so much about my illness, but about just feelings in general.  I think in time, the lines of communication about how I'm feeling will get better.  I'm not hoping for a miracle but I have to do my part.

Thank you for everyone, you wise ones, that have brought a lot of great insight to this thread.  It has helped me more than you know... and to laurajohn for starting this thread.

[nancylee]

World war 3 at my house last night!  It all came out. I am still trying to digest what happened or how it started. I am not 100% sure my husband is not on this site and has been reading my post.  The biggest HINT was in the heat of it all he said.. " you don't have a problem telling other people you are wrong or sorry" ... Well, here is the thing. I DO have a problem with that, and I have said both to you guys.

re;The fever/ chill situation and me not seeing him for hours. Well... he is insisting he came in the room ever 15 minutes and even moved the Thermometer off the pillow. It was moved. I asked why he doesn't come on appt with me and he said because I insist on going alone and I make him NOT TALK when he does. etc etc...

So, I laid in bed and thought it all out. Maybe I am being a maryter. Maybe its me shutting him out. I'm not that easy. A lot of stuff came out. Stress....!!

[mews]

Nancylee, I know this is going to sound tough but now is a good a time as ever to bite that tongue, and look forward not backward, take baby steps how can you resolve this without fighting, ask him can you both "talk" about how you would both like to be spoken to. What makes you feel good and what will make him feel good! But above all don't yell, think of what you want and need now and in the future.

This is such a hard time on you and I feel so bad for you! Take it slow and feel better..your friend Mary

[nancylee]

That made me laugh out loud!  I think I told you guys in one of the "Rage" post that I am fine with any of you telling me off. So okay, my new friend Mary. I will shut the heck up and listen to you guys.

You want to know something really funny. I have only been married to my husband for 11 month... THIS TIME! Yes. I was married to him before for 16 years and I divorced him. We started dating a year after we divorced and were in a wonderful non married relationship for 4 1/2 years. Last Jan. when i got so sick, we re-married for INSURANCE!!!! I truely feel that almost 100% of my unhappiness is because I FEEL I was forced into marraige. I do love him, but I never wanted to get married again. He did.

Do you have any idea how nice it was having a date whenever you wanted. He would show up on Friday night with his little rolley bag.. all clean and smelling good and leave on sunday and I had the house, bathrooms and remote control completely to myself. It was a slice of heaven!!! ( i know you are all a little jealous)

I am going to do my best to be nicer.

[irish]

Now is a good time to bring up that dreaded word---control. We don't have it anymore! We are not in control of our body, we can't control our ability to get work done around the house. Our body will usually betray us and we have to sit down and rest. We can't control our kids as much as we would like because we are not healthy enough to put up that good fight that parenting requires. We have lost control of our ability to have a job and this was and is an important part of who we are.

Think of it--someone asks us what we do and in earlier years we would not bat an eye. We would answer wife, mother, occupation and so on. Now when someone asks we end up making excuses. Well, I am a wife and a mother. In our head we are thinking that we sure can't do those jobs like we used to. They ask us if we work outside the home and we go into a "speel" about our health, having to take time off, ended up being permanent, disability, blah, blah, blah. It is a song and dance that really does get old.

Life isn't what it was and never will be. We are stuck on "auto" and not even sure if we know the rules or direction anymore. I guess in the old days we would take the bull by the horn and change things. Now, we don't know what to change and even if we could we don't know if we have the strength and endurance.

I guess if I was younger with kids at home I would call a family meeting and try to work out a new game plan. Kids need to have responsibility. If they can work with you and your spouse and give input without fear of retribution they will be a whole lot smarter and wiser when they graduate--if they cooperate. If they don't cooperate they are the losers, however parents rule!!! If all members could take up some slack and learn to work together to take the pressure off of everyone life would be better.

I would bet that all family members would welcome a chance to voice their fears and worries about the changes in the household. When one parent is ill the whole family dynamics get out of kilter. I would even bet that with family meeting under the belt we could adapt to new rules and regs along with new expected outcomes. The house won't be as clean. THe paper plates may be used more, but the important things like the washing and whatever else is important in a household may work better. It could take the stress off of both spouses which would also relieve alot of stress in a household.

I don't think that I know it all. In fact the older I get the less I know about everything and the more I know about nothing. Many of you are stuggling with kids and parents. I have no inlaws or parents to worry about now. Thankfully, as I don't think I could do it anymore. I am at the point where I am praying that I outlive my hubby as I could adapt to a nursing home better than he could. Life has problems no matter what age we are. As I look back over the years and all the issues that I worried about I never dreamt that I would be worrying about health issues of this magnitude so early in my golden years.

We do what we can, but I do think that we don't deal with our loss of control very well at all. Most of us weren't expecting it and really never get over the shock. Just have to head in a new direction, accept, adapt and perservere. May we all have the strength. Irish

[Katybarstool]

I've been reading this thread and my heart goes out to all of you who have troubled relationships. Irish, your insight is also much appreciated.

I'm one of the luckier ones - at least for now. My hubby is 7 years older than me - not a lot, but he always joked he had a younger wife to look after him in his dotage. He has a weak chest, and spondylosis in his neck from doing repetitive production line work for many years. Upto 6 or 7 years ago, I used to do all the decorating, outside work etc, as we thought he couldn't do it. However, in that time I've been diagnosed with various conditions, and had lots of surgery, and now it is he who needs to be the active one - and neither of us finds it easy.

I suppose I've always been the stronger one in the relationship - always sorted out finances, kids, and the home, and I used to thrive on it. Not any more - and now I sometimes feel resentful that hubby doesn't do more of the emotional stuff. We did have a fights one time after surgery when he just got on with his own life, and left me to look after myself, and he really has tried since then. However, like many of you, he just takes all my medical appointments/problems for granted now - even to the point of foretting to ask how I got on, and that makes me sad. Having said that, he is very sweet most of the time, and does his best, but like someone else said, if he can't mend it, he doesn't want to know.

Anyway. this thread has really made me think, and I've come to the conclusion that neither of us like the way our life has turned out, but we are both trying to make the best of it.

Hugs to all you very kind, caring and compassionate people, and especially for those who feel they are on their journey alone. Remember, WE are here for you.

God bless.
Kathyx   

[Joe S.]

I agree with Irish. We must accept, adapt and persevere. This is why I talk about "finding what works for you", and "when there is no cure find out how to manage until there is a cure".

[ynevar]

Yes you can keep it... I did write it.  I don't mind sharing.

*hugs to all*  I think this is the hardest part for me, of this... how it affects your relationships... but basically I think it is realizing that you have to adjust your view of yourself and hope that your loved ones will as well.

-Y

[Nathan]

Thank you ynevar for posting what you did. After a rough couple of da..wee...mont... years, it really moved me.

I suppose I have a very different experience and view from many of you.
I fell in love and got married to a woman who had some pretty severe health issues (Rare Cancer, heart issues, etc). When we first started courting, I was healthy, and I did my best to educate myself, to know absolutely as much about her health condition(s) so that I could better support her, and know what to do in case of emergency. It was early on in that that I started becoming ill. I always did my best to support her, and often completely took off work and spent days with her... but even as close as we were, even as much as she had been through, she never believed anything was wrong with me. In the happiest time of my life, she marked my symptoms up to depression. I still hurt on our wedding day, just like I hurt the day before, and the day after. Our relationship ended quickly, abruptly, and I've been on my own ever since, in pretty much every way.

Relationships are very much a two way street, and sometimes it can be so easy to get wrapped up in our own conditions, because you can't get it out of your head... it's ALWAYS there. No matter how alone you are, Sjogren's is always there to make things just that much worse for you.

And irish, it is amazing how wise you are. You've hit it dead on. But I don't think I've ever really felt like I was really in control of my life, one less thing to mourn losing.

I suppose I've lucked out that I don't have a wife or kids or anything to share this burden with, but I still do worry if I'll be this way until I finally leave this earth.

[irish]

Nathan, I am wondering how you manage on a day to day basis when you are alone so much. Some people can do it and others can't.

I love to be alone and I can get so much more done when I am alone. One of our boys called hubby to go ice fishing tomorrow and I am thrilled as he hates sitting around on the weekend and now I can get something done.

Anyway, I have always wondered why there are not more people that live together as a social event. I had read an article in one of the big papers a few years ago about widows and widowers living together. Not romantically, etc., but it works out so much better. There are others to share the rent, grocery bills and utilities. The women take turns cooking and the men can do the chores around the house. Sort of division of labor thing.

The best thing about it is they are not alone if something happens. If they get sick of the others they can retire to their rooms and watch TV, read, etc.

I have always wondered why more people aren't living together as it has some perks. Also has some downs, but such is life.
I hope I have not said anything to offend you. I feel bad that you had such a bad experience in marriage. One thing is for sure, we never know just exactly what life has in store for us no matter how well we plan.

I hope that you are able to have a few people who you can call on in emergencies, etc. Makes life easier if you do. Making friends and keeping friends is hard when we don't feel well. I don't do much with anyone cause my energy level is the pits. I have the good days, but I also have good days where I will wilt on the spot. Enjoy shopping, but have to rest a lot. Going with someone would lay me up for 2 weeks.

Please keep posting and know that we are here for you. As far as me being wise, if you have suffered and lived long enough you tend to pick up on a few things along the way. Having depression also gives me a little different slant on life. Depression is much better the past 20 years, but before that life was a struggle. Irish

[Nathan]

I manage on a day to day basis because I must.
It would be nice to have others around, but then I'd be worrying about my impact on them, if they even want to be around me, if I'm going to lose a friendship because of this, etc

Do not worry about offending me. I don't think it's possible (hasn't happened yet). I much prefer someone being blunt with me than tiptoeing around what they're trying to say.

Thanks for always being around, and dropping some knowledge on us from time to time

[Meld256]

What an indepth, interesting thread this has been...so many different situations and yet, so many things we have in common.

That's a great point, irish, in regard to control. We have lost control over everything in our lives, and we mourn it... and to sum up things as we must accept, adapt, and persevere. Those three words can mean so much emotional work for us. Each of those things can be so difficult to do, but we must do them if we are to try living any type of balanced and happy life.

I'm so thankful we have each other to travel that journey together...