New here - spouse is miserable

[JennyC]

Hello!
I've been using this wonderful website since DH was diagnosed 6 months ago. He has frequency and urgency but, thanks to diet, no pain and is now sleeping through the night and going only about 4 times a day although he has some sensation from time to time and flares when he gets annoyed with the diet and goes off or gets angry (which seems to be more and more these days).

I've been trying to be as supportive as possible - he wouldn't take action when he was diagnosed so I found resources, food lists, a great urologist, I shop, try to make his boring diet as livable as possible, tell him I'll do whatever I can to help him, track his diet so we can see what his triggers are, take on extra responsibilites around the house and rub his back when he's having a bad moment.

He's a great guy but pretty angry and disappointed all the time it seems. I've got a lot on my plate - an unhappy, pessimistic husband, two young children (ages 2 and 5), very little sleep (the little one is up once or twice each night), work full-time, do most of the household chores, shop, cook and try to make life as happy as possible for everyone. Sometimes I feel like I can't do it all any more but there's no real alternative.

I've been feeling down and really need something back in this relationship. We can't afford a sitter too often and my family lives 200 miles away. I really need some intimacy with my dh - not sex (I reassure him that whenever he's ready, it's fine with me) but just some cuddling or hand holding or just have him listen to how my day was. I called him the other day at work to tell him that our son was bitten at daycare. He went off into a tirade about how the world sucks and he doesn't deserve this. I agreed he doesn't deserve this but before I could tell him about our son, he said "gotta go" and hung up. I asked later if his boss came in or he had a work issue, he said "no - I was just finished talking". It's all about him all the time. He spends time with the kids here and there but not enough.

I'm at a loss. I want to be sensitive and supportive but sometimes I feel I'm feeding into his situation by not asking anything of him especially since he's in no pain and functions pretty well. He won't go to counseling and he doesn't want to hear that I need some time with him. He thinks I don't understand and if I did, I wouldn't ask him for anything. I don't understand but I'm trying.

I guess I'm not sure what I'm asking here. Just venting maybe or perhaps a little perspective. Am I asking too much or should I be supportive in different ways? I even tried to have a night out with him and called our favorite restaurant and talked to the chef. He was great and agreed to specially cook a meal for him with bottled water and no spices - taking care not to mix anything up and dh wouldn't even go. sigh....

Maybe I'm just exhausted and sad right now. Any suggestions would be appreciated. Thanks so much.

Jenny

[Prinny Joy]

We're sorry you are going through this. Both Husband and I. We have been working harder than ever to try to be more understanding of one another and he reads these posts. I'm just wondering if your husband reads the posts? Would he gain some insight to this? Please know I feel so badly for you as you are coming across as a VERY loving wife. Is there more to this than the IC, I ask because what I would give to work and have children and also only use the RR 4 times a day and sleep through the night. Maybe I'm asking for more info. I don't even know if you'll think I'm crazy for saying this but do you watch Dr. Phil? I ask because he has Relationship Rescue and it covers so much in that book and its a book where it is more about the individual self. Gosh I don't want to say the wrong thing and don't even feel as though I'm helping or just probing. I am really sorry for the stress you are going through. Gosh, gosh, It just sounds thus far like more than the IC. Not sure I am probably way out there. Anyway, I'm sorry for your stress and pain of this.

[ICB]

Hello Jenny:

I have IC and my husband has been very supportive. However, that doesn't mean that he's been my doormat. When I've had horrific days and nights, he's done everything for me. When I haven't felt like going out because I was too sick, he rented a chick-flick and watched it with me; and I loved him for it, even if he slept through most of it. However when I'm well, I've gone out of my way to do the things that make him happy.

My point is that your offer of support is great, however you should not be punished for someone else's illness. Since your husband is not willing to go to counseling, I suggest that you go to see someone who specializes in "living with a person who has a chronic illness" - if you can't make it to the counselor, pick up a self-help book with the same topic. It may give you some great ideas to implement in your relationship that may help you both.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB :flower:

[Baba Yaga]

Jenny,
I don't know a nice way to say all the things I want to say. If you are open to hearing me blurt them out, please say so.

In the time being all I can say is give the man his space, and allow him to experience the consequences of how he is choosing to be -- without killing yourself to protect him from them. Cut whatever corners are needed to give yourself some rest, and make do for a little while with what intimacy and companionship there is to be had from one's children. What I'm saying is I think he needs a wake up call.

[Cheries]

It sounds to me like he is depressed and probably trying to cope with his diagnosis. Don't take his feelings so personally. It will take him time to figure this out. Everyone copes differently with this. What if he had cancer? Or some other illness? This diagnosis is a devastating blow and can take years to accept and assimilate. Do what you have to to take care of yourself also. He will catch up to you eventually. Just be there for him. Let him plan his own meals etc.

[Dianne]

All I could suggest is getting to AlAnon asap. If you took out the word IC and put in the word alcohol, everything else is the same. AlAnon is all about making life meaningful for you no matter what that other person is doing or not doing. That's where I learned it. I've been going for over 20 years. What I especially loved is learning how to do my part but not more than my part so I didn't become resentful. I met a whole bunch of people who were living happily in relationships with people that maybe couldn't or wouldn't pull their weight in the relationship. I learned how to take care of me and how to get my needs met too when that other person couldn't. After getting all those relationship skills, I met someone really wonderful and remain happily married. So glad you found this board. Hope you find something here that can help you.

[Kara Isabel]

Hi Jenny,

It sounds like you are doing a great job of being supportive and helpful. My advice to you, would be to take care of yourself as well! As women, with multiple roles and obligations it is so easy to get boggled down/ burned out!! Don't pass up opportunity to recharge/relax, etc.

Hopefully, some of the men here will come out of the woodwork and give you some advice. Maybe you should run a thread on the "men w/ IC" discussion and state that your "husband has IC". Maybe that will direct more men to possible give you insight from their perspective???

Is he on the standard IC meds? Elmiron, Elavil, hydroxyzine? Maybe he is just having a hard time with the side effects of those medications and needs time to adjust?

I wish I had the answers for you, but I applaude your interest and considerate nature of which you are handling this as a spouse! My husband is a GREAT guy, but I doubt he even has a clue as to the magnitude of IC. He probably can't even remember the name of the "disease" lol.. OH well.

I have never really understood men and the way they react when they are sick. I was just saying earlier, that if my husband has a cold he is absolutely miserable and sleeps/complains all day, ME? I just go about daily life and perservere! lol.

I hope he feels better soon! Don't get caught up in *guilt* that you can't fix him or cheer him up, hon.......It's not your fault his is miserable right now. :grouphug: :grouphug:

[Pac168r]

My husband sounds similar in nature to yours. If I suggest something he tunes me out, his male buddy can say the same thing 10 minutes later and he's the best thing since sliced bread.

Can you get the help of one of his male friends without him knowing it came from you? Don't rush into it, give him space.

My husband drives me crazy everyday, but I still love him. I just wish he'd give me more credit. I've started letting him fix his own messes and bite my tongue when I want to say "Why didn't you listen to me in the first place?"

I suggest you tell him that you need time out for you. If he is capable of working, he can care for his children for a few hours ( notice I didn't say babysit, if drives me nuts when guys get mad they have to "babysit" their own kids, like it's a temporary thing)

I find when I become more involved in my own life, my husband finds me more attractive.

I also agree that he should be checked for depression, but I can just imagine when you bring that subject up. Keep in mind he may be in pain and not telling you, I'm guilty of that alot beacause I don't want to be a pain in the neck.

Hopefully you both will find your way back together.

[dancemomof2]

You sound like an IC patients dream spouse. I also agree he sounds a little depressed and angry about his diagnosis. Maybe slack off on some of his chores that aren't hard and let them go for awhile. Tell him you need that 20 minutes at night to just cuddle on the couch after the kids go to bed. I know this is awful but make him take a night shift here and there. If he is sleeping throught the night you should also once and awhile. Has hubby checked out info on theboards here to help deal with his IC some. Maybe talk to his URo about all this and try some medications to help with some of this.

Sending you a great big :grouphug: and remember take care of you also in this process of learning.

[talksick]

Hey Jenny,
You posted your thread a while ago so I dunno if your still checking for replies and reading your thread but here goes anyway. Your husband totally sounds like me sometimes! (to be honest with you).
He only got diagnosed 6 months ago so he's relatively new to IC. This is a very hard illness to deal with. It totally changes your life as it affects all aspects of the way you live. The worst part of IC is that many things that used to bring you pleasure now result in pain and discomfort (Food, sex, swimming in clorinated water etc.) It's a fairly unusual disease so many people don't understand how truly painful and debilitating it can be. Everytime you go out you are reminded of how different you are from other people now and of all the things you can't do cause of your illness. You have to check for ingredients, bathrooms, etc. things that "normal people" don't have to think twice about. Naturally most patients go through periods where they become very angry at their circumstances. I've had IC for 2 years now and I still alter between being ok with my condition and being very depressed/angry.
I would suggest that your husband attend IC support meetings if there are any around where you live. Or come here for the chat nights and message boards and talk to others with IC. You are a great spouse and it is wonderful that you are being so supportive of your husband. However, you must realize that only other people with IC will really be able to understand what your husband is going through. Therefore, it would probably be most helpful for him to receive some support from other people with IC.
Just remember how he is acting is not personnal. He's not really mad at you, he's mad at the illness and probably feeling very scared and alone. However, you deserve to be treated with respect. So, sometime when he's not as angry you might try discussing your worries with him. Admit to him that you don't know what it is like to have IC. But remind him that you do know what it is like to see your spouse in a lot of pain and angry at the world and that you are worried about him and geniunely want to help as best you can. Let him know that you've seen all the changes he's had to make in his life and you can only imagine how difficult it is for him. But gently remind him that when he takes his anger out on you it is hurtful and suggest that he talk to other people with IC as a healthy outlet.
Good Luck,
Kim