future husband having trouble understanding

[gloriabono68]

I guess this is probably more for the just venting section but for some reason i couldn't find it.....must have overlooked it............

anyway......he usually does pretty good with me and my IC problems. But lately hes been more like " you need to just get out and do something , find something to occupy my time with. because i am worth more than that and better than that, referring to my " pity parties" and that he doesn't know what to do with me or how to handle it when i have my so called "pity parties"

HE said next time i had one to not invite him..........which i didnt realize i had invited him to begin with. I do talk to him some about it but not a lot. This is a very stressful illness to have and i know it effects everyone and everything in my life and yes sometimes people , I NEED A FRGGIN PITY PARTY!! no i don't do it all the time.....and yes i try to find things to do and stay as positive as possible......but this is the type of things he is starting to tell me alot more. And also i am having alot of financial difficulties right now because i cannot work and i have a disability claim running..... I have never asked him for money........and do not intend too.........

we've been together for a little over a year and we haven't set a date yet about getting married but its in the near future i am sure. But lately hes been alot more moodier than usual or either i am just more stressed and sensitive than usual........maybe some of both. Sometimes i think he expects too much out of me .......and maybe i am expecting too much out of him........

lately i feel like i have to defend myself all the time and it didnt use to be that way.........I just wish i could make him understand what this is like............and most of the time he does pretty well.
so i don't know why i am making such a big deal out of it this time.
I guess what i am asking is..........how can i talk to him about what is bothering me, when he does this..........so not to make the situation worse ..or make him mad or well you get the idea i am sure.........any advice would be greatly appreciated.............

gloriabono:confused:

[dyno]

Gloria,
I think this is one of the hardest aspects of our illness. Because people can't see a physical ailment, it is hard for them to understand what is going on.

One thing that I really believe is the communication is key to a successful relationship. This is true in any relationship, not just one where illness is involved. If he hasn't been to a Dr.s appt. with you, maybe you should take him. Let him read about things on here. I feel this is something important to get worked out before you get married. If he can't accept that you are going to have some bad days, your new marriage could be a nightmare. I have been in a relationship like that and we ended in divorce for a variety of reasons, that being one of them. My 2nd husband is very understanding and is always looking out for me.

I wish you well, and wish there was more to suggest. Good luck and know that we all care.:grouphug:

[ICNDonna]

Jolene has given you some excellent advice. Communication is essential to a lasting relationship.

Warm hugs,
Donna

[Annie2]

You have received excellent advice here. I, too, would encourage you to take ask your partner to go with you to at least one of your uro appointments. Ask him to be a full partner in your health care team. Have him research treatments and help you with your treatment decisions. If he is to be your life partner, he needs to be your partner in this, too. Another suggestion might be a session or 2 with a counselor experienced in dealing with chronic illness. That could help both of you in understanding how this could effect your relationship and give you both tools to help you deal with it.

Good luck and all the best to both of you!

[Katrina]

I agree a lot with communication being key. I think you need to choose a time when you are feeling good to talk about how you feel when you are not and how he has made you feel during those times. I also think you need to explain that you know this is hard on the both of you....you included ....and he has hurt you when acting that way.....and give him the opportunity to talk about how it has been hurting him. Very likely it has been and that it brought him to a breaking point. Hopefully you can help each other through this from now on.

Best Wishes:kiss:

[gloriabono68]

Thanks guys........i really appreciate it.............and believe me i am taking notes on everything on here.........i do not know what i would do without this board and the warm helpful people online here. I Know that when the rest of the world shuts me out , i always have a home here .
For the most part like i said........he does pretty well.......its just everyonce in while that he thinks he being helpful but it isnt.....and hes always checking to make sure i don't need to stop to pee somewhere or that i am ok to even go that day or whatever.........I just didnt know how to explain to him on the days when he decides i need to be doing something else.....and not having a pity party how to talk to him about it.......and i really do appreciate it.......
Take care and i hope you all have a great weekend.........

kristi ( gloriabono)

[fireflicker285]

Let him know that you are always going to have IC, until a cure is found and you both need to find healthy ways to cope with the stress and changes it brings to your lives.

I know, it can be hard on a partner, especially when they have never had any "bladder trouble". As understanding as my husband tries to be, he still doesn't "get it". He would have to have it to know.

Good Luck.

[ibtracy]

Hi there. I totally understand how you feel. When I first joined the ICN that's all I posted was how mean and non understanding my hubby was and I got alot of support from these wonderful ladies.

If your man would like to talk to my husband and you think that might help - email me and we can set somthing up for them to talk. Jon is really cool about the whole thing now and even performs the instillments for me and we work together with IC things now and he doesn't hold IC against me.

Give it some thought, okay?

[Nicole in ATL]

Good advice from the other ladies. I am getting married in August and have been with my fiance for over 2 1/2 yrs (but have been friends for about 14 yrs.). I was diagnosed with IC about 6 months into our relationship.

I bring home articles for him to read about IC. I talk about treatments that I want to try or hope work. I wrote out my scripts for him to have as a reference if there was an emergency.

I also make it a point to tell him when I am feeling O.K. or not that bad, even if it was for an hour or too. If I had a good afternoon (pain wise), I tell him. I think this helps.

Coping with this disease is difficult. Hang in there. Talk to your friends and family about it too, if you can. I think that our close friends and family feel helpless sometimes and they don't know what to say. So they might suggest things that seem stupid or unsympathetic.

I hope things with your boyfriend get better.

Nicole

[crystilclear]

I went through something like that last night with my hubby. He has been upset because I'm on here too much. But I explained to him that I vent a lot here because you all are more able and willing to listen and understand. It's hard to have a happy medium. He says I can always talk to him but I don't want to bring him down all the time. It can be overwhelming for our partners too. He says just tell me when you feel bad.... Well I said that's all the time lately. Sometimes I am hurting so bad I just don't want to do anything. I had to explain this again with my mother and sister who called while I was frieking out. Interesting in the patient handbook it talks about viseral pain and somatic pain. Anyways most ICers had viseral pain which also helps regulate your emotions, anyways here I copied it from the handbook:

Visceral pain is the type of pain produced by the organs in the body. IC pain is visceral pain. Experts suggest that IC may be a chronic visceral pain syndrome. There is much arousal and emotion associated with visceral pain, because it sends messages to the part of the brain called the limbic system. The limbic system regulates arousal and emotion, pleasure and pain, smell and sexual desire.
Visceral pain is different than somatic pain, which is experienced after fracturing a bone or a surgical incision. It's not really possible to keep a "stiff upper lip" or use "mind over matter" with intense visceral pain. The messages from the bladder can make a patient feel out of control, upset, emotional, depressed and hyper-vigilant (the need to be on guard against harm). Treatments for IC are often geared to calm the pain and the symptoms by preventing pain signals from reaching the brain.

It explains it alot more than I could. Anyways it makes sense to me. I explained it in a different way he could understand better. I would look up some info to explain it better to him. I don't know maybe that would help? I wish you luck. We all have felt that way. I hope you are feeling better soon. Take care - Chris

[fireflicker285]

I never thought of that, but it makes alot of sense.
To say when you are having a good day, or a good hour. It may make it easier for the other people around you and it likely is good for yourself too!

Now that I think of it, I only tell my husband when I am flared. Not when I feel pretty good. I never thought how that sounds to someone else who doesn't feel what we feel. (being aware of our bladders constantly).

Anyway, great point. Being postive never hurt anyone.:kiss:
(even if we hurt).

[blue]

I agree, that taking himwith you to a doctor's appointment, and letting the doctor talk to him, could be helpful.

Good Luck!

[Calli]

Love, my BF always goes with me to doctor's appointments and also calls instead of me if I am feeling bad and he talks to the doctor. He knows EVERYTHING about my problems and me. If he wouldn't and would even think that I am making it up or something, I wouldn't want to be with him since I already have enough problems and don't need another one with someone who is suppose to help me with them.

Tell him that you need to talk to him, seat him down and explain what you feel and what vibes he is giving you and then tell him how this illness can go and what you two can expect, what life can be or will be or maybe won't be, and ESPECIALLY what you need from him. Tell him all of that and then ask him to tell you honestly what is going on inside of him, what he wants and thinks and feels and try to resolve it NOW.

I actually told all of this to my BF and told him that if he feels he can't do this, I will go. He talked to me and we talked about it for a long time and still do and in his own words: "No way, I love you. You can count on me!"

Also, I think you need to resolve this now, because you will really need him in the future and if he keeps behaving like this and you two don't talk about it and your feeling, you will have even more problems. You know, even if you have a perfect man next to you, its still soooo hard sometimes. *sigh*

[gloriabono68]

man do i sound like a constant whinner or what..........thanks for always listening to me whine........i need it............

LIke i said earlier.......he is for the most part pretty good about it. He knows that it never will go away, he knows i have to deal with it on a constant basis. and to some extent he is right.......i do need to do something about it , instead of constantly having a pity party......but he gets frustrated because he wants to help and he doesn't seem to know how to help when i get to that point. I for the most part just grin and bare it ........and he tells me to let him know if i cannot go anywhere or do anything and we'll just stay home.......He thinks that if i stay busy , it will help me better.........and somedays that does work a little and some days it doesnt work at all.
and he always asks how my dr visit went and what they told me and he always asks , are u having a good day today? I had several good days in row but now i am back to having a constant peeing flare........
and i feel like if i could just sleep i could handle things better cause i never get any rest......and then i start worrying that if i take something to make me sleep i will pee in the bed like i did when i was little or something.......i just think irrational crap all the time........
and i did talk to him , after his little outbursts the other night but i waited about three days when neither of us were still "agitaed" and i asked him why was it ok for him to have a pity party every once in a while and not ok for me?? and he was like , well i don't do that anymore........and i was like....yeah ya do.........but not as much.........and i just flat out told him........that somedays i just have to have one. but i would try and not get him to upset over it. cause somethings are just out of my control and he thinks everything can be kept under control and as we know........IC rarelly can be kept that way..........i use to could keep it under control , but now it has a mind of its own and its vicious..........I am too dependant on him and the least little bitty things he says or does , literally tears my nerves up to the point that i cried for two days and had to get a xanax from my mother........I use to didnt be that way.........
ANd he did tell me one day , that there was no way he could understand what having IC is like and he really couldnt imagine what this is like for me. I guess its natural for him to get upset about it too since lately i just cannot seem to get better..........I don't know......its just so confusing and frustrating.............and i so worried about money issues right now too because i cannot work like this and i get more upset about that........and he never has to worry about money and the like...........and this disability claim is taking forever.........
BUT again.........i thank all of you.............i don't know what i would do without this website and all of you............
kristi ( gloriabono):dogrun: