Husband doesn't understand IC!

[princessdaisy]

I just wanted to vent...(I hope I posted in the appropriate section)

I first off have to say that for the most part, my husband is very supportive. He takes me to all of my Doctor appointments, he doesn't complain when we are traveling and I need to use the bathroom frequently.

That being said, I had abdominal surgery in March, and since then, my IC has flared and hasn't stopped. On top of that I'm still having some type of nerve pain from the surgery, and I lost my job. So, stress has been high in our house. My hubby injured himself at work, so he's been home, too.

My hubby can't sit still, even though he is injured- he doesn't let anything stop him. He loves going to concerts, festivals, etc. plus we have a 12 year old that doesn't sit still either....

My problem is, My Dr has me trying all kinds of new meds. It's hard to deal with the side effects, especially when I don't know what they are yet. They make me drowsy, cause headaches, dizzyness, etc. I'm not always able to go out and 'have fun'. I tried a new one last night even, and I'm so dizzy today, I did some things around the house, but I need to sit!

I understand hubbys frustration with me not wanting to go places, or saying I'll go, then at the last minute, backing out. Or just not committing at all, and saying 'maybe I'll go'. It totally frustrates him, and he takes it out on me.

He says things like, 'well I guess we're not going to have any fun this summer'. or 'do you just want to sit around all summer?' or, 'we haven't done anything fun all week'.

I tell him to just take go out and have fun, it's okay. I'll stay home and do yoga, or watch a movie, rest, relax, etc. I really don't mind. But he will NOT go without me. He will stay home and mope instead.

So, last night, I went out when I shouldn't have. I was in so much pain, and was so out of it! (The bathrooms were dirty and out of toilet paper)but I felt it was the lesser of two evils. (to go out in pain vs. stay home and listen to how boring I am, and how I'm never going to do anything this summer, etc)

So, I need an outside perspective...Am I wallowing in self pity, or do I deserve a break? Is this medication clouding my judgement? Is my hubby being childish? Is this verbal abuse? How do I get him to understand?

Please Help by giving me your opinion. thanks for letting me vent :)

[jjekblad]

It looks like you've had IC for a long time..do you go through long remissions? Just curious because you said your husband doesn't understand. I know how hard it is trying to get people to understand. My family is supportive but they keep saying "I just don't understand why they can't just fix this infection" and I want to scream "It's not an infection!" As you can see I'm new to this. My partner doesn't get it either but is still pretty supportive. And no you're not wrong to throw a pity party. We are hurting and others don't realize how much. I would never want cancer but I feel like family and friends would be more supportive if we had something that wasn't so rare and misunderstood. Hang in there! Oh and rest!

[princessdaisy]

jjekblad
thanks for your response...I've had this since 1995 ish. For the longest time I 'ignored' the problem, meaning, I didn't see any Doctors,or talk to anyone about it. I basically just kept it to myself. Mainly due to my Urologist. I didn't like him, or the bleak diagnosis. I was discouraged when I would bring it up other Doctors or nurse and no one knew what I was talking about.

Now, many many years later the medical community know what it is at least. You asked if I go through long remissions..well, no. I don't ever remember a time when I thought, gee, my bladder isn't bothering me today. It's always been an issue. It's just that this last surgery I had really seemed to amplify the symptoms, and I had health insurance at the time, and I thought I might as well have this checked out again.

I've only been married 3 years and I just feel like I am ruining his quality of life not being able to do all the things he wants. We already went to 2 concerts and some other things this summer already, and are planning a camping trip (yikes). so, I am trying to be active.
It's gotten so bad I've mentioned divorce to him a few times...

I have thought the same thing you did about cancer..it would be much easier in ways if it was a more recognizable disease, or if we had to be in the hospital for treatments.

Hang in there too!!

[ICNDonna]

It sounds to me like you are two very frustrated people. Sometimes just talking it out can help. Let him know how frustrated you feel about not knowing if you'll feel good enough to go out. And if he's recovering from an injury he must also feel frustrated about not being able to work. My husband has arthritis so he also has pain. We do try to understand each other, but it's not always easy to avoid a pain contest.

I hope you feel better soon. How long will your husband be off work?

Donna

[princessdaisy]

Thanks, Donna-
It's funny you say 'pain contest'. My hubby thinks his pain is more extreme than mine. I don't know if it is or not, but we each have different pain tolerances, and different levels of pain, so no one should be judging.
My hubby's career is ruined due to his injury. He will be attending college in fall to learn a new career. We have faith in God, so we actually try and see things as a blessing. Even my talking about divorce, I shouldn't. It just gets difficult, and this medicine clouds my judgement, I think...
Thanks again for listening <3

[ICNDonna]

Have you considered talking with a professional counselor? Sometimes it can really help --- if your husband won't or can't go with you, it's okay to go alone. Adversity can either make a marriage stronger or, in some instances, it can destroy a marriage. I hope you are in the stronger group.

It's good to know your husband will be in a retraining program --- and it just might be for the best.

Sending gentle hugs,
Donna

[princessdaisy]

Thanks again, Donna..Yes, we've been going to counseling. as a couple, and on my own. Taking one day at a time...You are wonderful! Glad I found this site.