Help!!!

[trent]

My wife has been dealing with IC for over a year now. She is a wonderful person and I hate seeing her in this pain. I feel like nothing I do helps. I go to every Drs appt, take care of the house, kids, I make sure she takes her meds, I am so worn out. I see a social worker who specializes in people who have a loved one who is chronically ill. My wife says she hates life and actually I feel like this is making her not care for anyone. The social worker says this is typical of people with this disease. Anything I do she contradicts. I get blamed for alot. I love her dearly but I wouldnt ever think of leaving her. We are not the same. Is anyone going through this? what can I do?

[dyno]

Welcome to the site, I am glad you found us. It is so good to see spouses get involved, so many turn away. It shows how much you care, God bless you for that.

IC as well as many chronic diseases can be tough on anyone. I am assuming your wife has a good Dr. and he is trying different treatments to see what works best. Here is a link to the ICN Handbook, you will find a wealth of information in there.
http://www.ic-network.com/handbook/

In there is a section on diet, if your wife isn't following a diet, that can help so much. Also is your wife seeing anyone for depression, it sounds like she might need to and to get some medication to help with that.

What you can do is what you are doing. Reaching out, learning all you can, supporting her through thick and thin. It would be great if your wife could come here too, maybe it would help her.

I wish you both the very best, and if any of us can answer any other questions, we will do our best.

[cinder]

:pray: hang in there I'll send up a prayer for you, its great that she has you to depend on. i bet she is angry about her diease and most people tend to take it out on their spouses. this website is great so we'll hang in there with you.
cinder

[ICNJess]

Hi Trent,

You seem to be so caring and loving, it is nice to see you here!

From personal experience (I am the one who has IC, but I put my husband through hell for a year and a half) I think you are taking great steps. My husband came to all my doctor's appointments with me, and I was an absolute bear to live with.

I took all my anger and depression out on him. I was at such a low point, I didn't want to live anymore, because I felt useless and missed the person that I used to be. He would do housework, which would make me feel really guilty, which in turn made me angry--not at him--but at the disease and all it's limitations. Then I'd yell and scream and cry, or some days I'd just stay in bed and not talk to anyone.

A part of me resented him for being healthy, and the rest of me was angry at the world in general. My husband, God bless his soul, remained by my side and helped me through it. When I would get depressed, he'd try to help me out of it, but after awhile, he realized it was something I needed to deal with, so sometimes he'd stay clear out of my way.

I am a much easier person to be around these days. I began to feel less sorry for myself and realize there are things much worse to deal with in life, like cancer, the loss of a loved one, etc.

Has your wife considered counseling? I went through some sessions and slowly began to feel better. Give your wife time--I was diagnosed just 2 weeks after getting married, and my husband and I were 20. I really regret puting my husband through such hell, and I am forever apologizing to him, but he says he loved me and apologies aren't necessary. You sound like a wonderful husband, I give you much applause for reaching out to help her.

Ok long story concludes, sorry about the novel lol

Hugs,
Jess

[trent]

When she feels better, she pays no attention to working on us. I dont know what to do she always if we have a disagreement threatens to leave. She has spent so much time alone in bed, I feel she has forgotten about US! She doesnt talk to me much about I have tried and I sometime withdrew myself. I dont know how to reach her. She has focused on this so much she has forgotten about everything else. I never felt so alone in my life. But I would never leave her because I love her dearly, before she got sick we had so much fun and plans. Now it seems she has forgotten about us and what being together is suppose to mean. No relationship goes without the bumps and bruises. The social worker (who she wont go see) says that maybe some of her medications are to blame. But what am I to do. I have a stressful job that I am danger of losing because I have taken so much time to be their for her and she doesnt seem to care.

[jaime15]

Trent,
Have you tried writing your thoughts, hopes, dreams, wishes for you two, in a letter. You could slip it under her pillow so she will find it on her own. That is an option to consider if she doesn't talk face to face. Leave her some stationary to reply back with.
What types of meds has she tried?
I can only encourage you to keep doing what you already are. But take care of you too. Maybe check in to seeing a counselor even if you go alone. Talking to a professional could help.
Hugs and hang in there.......maybe at some point show her this site. It could possibly help her in knowing there are thousands more going through the same illness. :grouphug:

[trent]

I have tried everything, I have given her everything, She is closing down and I think in denial. She almost feels like she would be better off alone I think. She has commitment issues. But we made our promises and vows. I am not a perfect man but I am no animal. I am under a terrible amount of stress. We talk about it I think its all better and then if we have a argument she goes right back and throughs old stuff in my face. We were never like this before. She comes to this website, I dont know her name here and it is not for me to ask. I just dont know what else to do.

[jaime15]

Trent,
I encourage you to seek some kind of counseling for yourself. I can understand the stress you are feeling.......and it isn't healthy............take care of you.... :grouphug:

[ICNDonna]

I think it's wonderful that you care so much and are willing to help.

That said, I would like to share what happened to me when my husband had heart surgery five years ago. For several weeks it was up to me to be sure he got his medications, saw his doctor for checkups, etc. --- and when he was better and able to take care of those things for himself, he became upset with me for "hovering." I noticed you say you make sure your wife takes her medications --- is this because that's what she needs. Does she want you to go to every appointment? She may be feeling you are trying to control her.

I may be totally off base on this, but you might ask her the question.

Sending warm encouraging hugs,
Donna

[desolationangel]

Unfortunately with all that ICers go through we do sometimes get withdrawn. You sound like you're doing an excellent job of being there for her. All I can recommend is counseling, and keeping in mind that as time goes on, she might adjust better to the way things are now. We all need our mourning period.

[ICNJess]

I think Jaime and Donna had some good suggestions.

I remember when my husband would "remind" me of my meds, I'd get pretty testy. I can't explain what I was subconsciously thinking and feeling then, but when my husband would try to encourage me to take medication, or try to get a better attitude, ohhh would I get mad.

I feel better being able to admit this now, but at the time, I was just a body, I wasn't me...

One thing my husband did to help pull me out of it was...well here's the short version of the story...

I thought he we would have a better life if I wasn't weighing him down, so I told him to leave. We were constantly fighting, he was getting stressed, and I wasn't making life easy. To be quite frank, our love life had deteriorated, all we did was fight, and I was depressed. I left the house that day for a few hours and didn't come back till late, then the next day he had letters, cards, flowers and came into our bedroom in tears, and told me everything he had been feeling. It really got through to me, and I realized I hadn't been very easy to live with.

I don't know if that would work for you, but I would encourage you to be open and honest and just sit down and spill everything out to her. She might become defensive, but just be gentle. You can't go wrong with honesty.

[trent]

I have been getting therapy for myself.

She is not the same person she was months ago and refuses to see it. I am not trying to control, I love her and want to help her. Sometimes she gets so depressed and withdraws, pushes me away and when I do something the exact same way she would have done with a household situation, she berates me. I am not perfect I sometimes respond in anger and say things I shouldnt have but this is a struggle. I am losing her and I feel like I am losing myself. I have never felt so helpless in my life. She refuses to even accept anyone elses advise and is difficult with the Drs sometimes. One Dr did not even want to treat her anymore and suggested she find someone else to be her Dr. She is going to go nuts when she reads my posts. But I have no one else to turn to. My family thinks she is being unappreciative and I dont want to allienate her from the them so I just tell them she is doing well and things are good. I just know. Right now she is in our bedroom just sleeping like she has all day. She might come out later or she might not. I ask how she is doing and she says she is sick of me asking her. Its like she is resenting everything I do and when I do make a mistake the resentment is so much greater.

[Julie B]

Wow, you are getting some fantastic wisdom here.....

I picked up on another thing. You said: When she feels better, she pays no attention to working on us

I am not sure what you mean about that, if it is sex, or going to a movie, or just cuddling.

My husband says I do this also. That when I feel better I should just focus 100% on him. But there is more to it than that. Sometimes when I am feeling better I really am waiting for the other shoe to drop.......or I am afraid of doing something that will make me worse again........including intimacy............

I think the very best thing you are doing is talking to a social worker/counselor about it......and she may benefit too.......many IC patients feel despondant at first, but it goes up and down......

Hang in there.........and don't be afraid to vent here...........smiles.....we all do now and then....................

[Betsie]

I agree, lots of great advice and not much I would add. It sounds to me that our wife might be in the grips of a profound depression, does she take anything? if so, is it helping or is it worse...all the obvious questions on that score. Perhaps if she is very depressed, she is unable to seperate that from the IC itself. :(

I guess to me it sounds like you have to really tune into taking care of yourself...maybe if you are doing everything and holding down a job, the next step is up to her. It isn't being selfish as much as it is being practical. I think I would do just what you need to do, try to keep the job in focus and let her figure out the things she can do....it sounds like i don't understand, but I do.

I think when we love someone we feel we have to show it 24/7. There has to be some give and take, and it sounds like you are doing all the give part...IC is no picnic, but it isn't fatal either...I would consider the depression part of this and hope that something works soon. Good luck, I know she appreciates you, I think she is stuck in the sorrow of the illness.

[trent]

Thanks for all your advice.

Yes not even going to the movies. cuddling or sex. She says she loves me. But they are words.

[ICNJess]

[QUOTE]I am not perfect I sometimes respond in anger and say things I shouldnt have but this is a struggle.[QUOTE]

You are only human, and you have feelings, too. I imagine she gets mighty defensive and you get defensive and it just explodes. I can understand that completely.

If your wife does happen to read this thread, I am sure that she will see that you are just concerned for her and your marriage, and that you are doing this out of your love for her.

I really feel for you and your wife...it is a hard thing to go through. All I can say is just be patient and be there. I know it's hard, as I pushed the world away and refused antidepressants and counseling at first, but for the sake of my own sanity and my husband's, I went, and it did help a lot. He came into a few sessions with me and came right out and said how this affected him, and things changed. I felt so guilty and so bad.

To some, I know it is hard to imagine a disease puting a strain on marriage. But when you feel like crap, and you're depressed about being sick and feeling this way and not being able to do things you used to, etc. etc. etc. it does take it's toll on a person and the people around the person. I hope things work out for you and your wife.

[trent]

I just made us dinner she came down and ate (I have had to adjust cooking so not to irritate her bladder). She helped me with the dishes and then went back to bed. She hugged me, gave me a kiss and I told her I registered here and she had a fit and starting telling me all the bad things I have done in the past. They were not that big of deal, I never had an affair or anything like that. I just dont understand it.

[ICNJess]

Trent,

I know you have the best of intentions, but I think if my husband had registered here while I was going through a rough patch, I would've been...well...irritated, and felt like he was invading my space. I don't mean for this to sound rude or anything, as you have every right to be here as a caring spouse, but she might feel like you're in her "territory"--where she goes to get away? I may be really wrong here, and if I am, I deeply apologize.

You keep mentioning that she is throwing things out about your past together. It sounds like she may have some unresolved issues from the past, and she may need some help getting over them. I am not sure what the problem is, and it's none of my business, but could you talk this through and tell her that it upsets you when she brings the past into an argument?

[trent]

Well first she comes here rarely and second we discuss them and they are resolved. But when she is in a bad mood they get thrown up at me. They did not have anything to do with infidelity. It was when we were first dating and then together doesnt everyone go through those growing pains in the initial relationship?

I am not sure I am invading her space because I thought this was for both people dealing with this disease and second I have not said who she is?

[ICNJess]

Trent,

I do agree, these boards are for IC patients and family members. Part of treating the disease is also treating the emotional aspect.

I am not sure what to say, I think it is respectable that you have kept her name private...maybe you could just ask her why she got so angry?

[trent]

She has not been easy to talk to in months. She sleeps alot, depressed and just not the same.

[janelle77362]

Hi Trent,
The way your wife is feeling is normal. I know that when I was first diagnosed with IC I became severely depressed and really did not take joy in anything or anybody. At times I even felt suicidal.
You are definitely doing the right thing. Be there for her, help her, and let her know that you are always available for her. What it took for me was time. It took time for me to heal and to try to move on with my life.
I am sure that in time your wife will learn to live with IC and begin to love life again. You should be very proud of yourself for sticking with her & doing the right thing....
Good Luck
Janelle

[trent]

Janelle

thank you for the encouraging words. I feel very unappreciated. She was in a bad mood and we argued because I scolded one of the kids and we argued and now she say she wants out of our relationship. Its been a lousy day and this isnt the first time she has said this during this illness period.

[janelle77362]

Hi Trent,
Just some of my suggestions about the meds your wife is taking...
Both oxycontin and the elavil can make depression and sucidial thoughts worse. See if you can suggest that the doctor puts her on an antihistamine instead of elavil and ultracet (a non narcotic pain killer) next time you go with her to the uro. And be very candid with the uro about her depression and lack of desire for life. Elavil is known to cause some people to have suicidal tendencies especially in those who are already depressed or have had thoughts of suicide. It is a serious side effect and should not be taken lightly.
Janelle

[trent]

What about irrational behavior? do these affect that too?

[janelle77362]

Well irrational behavior is a symptom of depression but it can also be caused by her pain. Pain can make people not able to see or think clearly. You should talk to the doctor about any symptoms that you think may be side effects of medication. The ICN drug glossary also has good information about these medications and their side effects: http://www.ic-network.com/glossary/
Here are some of the side effects I found for Elavil:
Drowsiness, fatigue, activation of latent schizophrenia, disorientation, confusional states, hallucinations, delusions, hypomanic reactions, disturbed concentration, nightmares, insomnia, restlessness, agitation, excitement, jitteriness, anxiety, giddiness. Seriously depressed patients should be carefully supervised. The possibility of suicide in depressed patients remains during treatment.

[ICNJess]

When I was on Elavil and Darvocet, I was very irrational and deeply depressed. :(

[loccolil]

hi trent, sounds like you are a wonderfull person to stand by your wife and this is just what she needs, i have had ic for 24 years and it dont get any better. you will probably :headbang: beat your head against the wall befor it is all over, so hang in there . you can help her though by watching what she eats cause the food she eats will trigger it . no spicy foods at all, if she eats something with in 15 to 30 minutes she will know it.pop is the worst thing she can drink,coffee and tea. they really trigger it. so hold in there and work with her, this is what she needs now. loccolil

[stacey79]

Hey, there. You have gotten a lot of good advice. I'm not sure I have much to add. I hope that things get better for you.

I know that one thing I did when I was first coming to grips with the fact that I have IC and it's not going to go away - I felt guilty that I couldn't be a better wife to my husband. I was 24 and he was 26 (OK, it's only like a year and a half later, but still!). I knew we should be at the height of our lives, getting out and doing things and all. BUt, I just couldn't. I felt bad. We bought our first house and the day we moved I got an infection, which made everything worse. I was angry about that. And I felt guilty when my husband was having to do more of the work than he shoudl have. I know he has a stressful job that he goes to everyday to support us. I also felt guilty because I wasn't making any money (I'm a free-lancer and don't get paid when I can't work!). So, even though I was actually thinking about him to an extent, I was still taking some of my anger and frustration out on him. This could be part of what your wife is going through. This whole thing is so difficult to deal with.

I also found that there were things I could do for myself that would help, like listening to inspirational music. Music is a HUGE thing for me. I wasn't able to play any of my instruments because I felt bad, but I could at least listen and let lyrics wash over me. That was good for my stress, guilt, anger, anxiety - you name it - and therefore good for my husband.

I encourage you to hang in there. When my husband first started to talk with me about solutions and treatments, I would get defensive, especially when it came to the diet. Then one day I broke down and asked for his help. I had to be ready for it. And now, we work together on it. He helps me read labels on everything and come up with game plans for going out to dinner, etc. Had he tried that even just six months ago, I probably would have smacked him!

I will keep you and your family in my thoughts and prayers!

[Dianne]

I don't know if this will help or not. I have a woman friend who's pretty new to my life but so very supportive about my illness and is making a lot of effort to become educated to IC. But the thing that has touched me the most besides going with me to appts., etc. is she asks me three questions on a regular basis: "how do you feel?" "what do you need from me?" and "what can I do to help?" I was so stunned at first, I never even knew how to answer. Just wasn't used to having someone so emotionally available around. I have gobs of friends and a great husband but none of them would have the ability/skills to show up with me on this level. They all love me dearly, but just wouldn't know how. Recently this friend was rooming with me at a dog show. I was having a horrible night. She's a light sleeper so she knew I was getting up and down constantly. She asked what she could do for me and I told her nothing I could think of, I have to just wait it out on nights like that. She responded "then I'll wait with you". She got her pillow and sat up with me for hours. Sat by me until after I fell asleep. In over 10 years of having IC, have never experienced anything so wonderful in terms of support. I was thinking that night how that would be every IC patient's dream - to have someone that would sit up with you on nights you hurt too bad to sleep. Still chokes me up every time I think about it. How lucky am I.

[Julie B]

Ok, now I am in tears Dianne.........what a gentle soul you have found for a friend.........