keeping things positive

[whispercalm]

How do you keep your partner from being discouraged and getting down? I was just diagnosed two weeks ago and it has been rough for me. I am living in the same home with my guy, but we do maintain seperate bedrooms. I have been quite down and am confused about all the IC stuff and what to do. He is such an upbeat guy and I am afraid that seeing me down and inpain, confused, depressed at times, etc will drive him away. We already are at the he doesn't knowif he can be married stage. ( He was marraied before and it went bad, but has beenalone for 15 year until he met me.) We aren't youngsters,, I am 47 and he is 56.
I am afraid that this IC will make him eventually run. How do I stay the happy, fun girl he fell in love with?

[cindydi]

Focus on what you have to be thankful for. Also, finding a doctor who will help you control the pain will help.

Cindy

[Claredale]

I don't think it's your job to keep him happy, like Cindy said, you need to be focused on getting yourself healthy! I understand wanting to keep his company, so I hope even though he isn't ready to be married, he can still want to see you as that fun girl, so I hope that he will know that he can make that possible!

Tracey

[leelee88]

Whispercalm,

You know there is so many things you can do to keep things alive in your relationship with your partner, But I feel that the most important thing is communication. You have to be open with your partner and let them know how your are feeling and make them feel a part of whatever is going on with you. Know matter if it is good day or a bad day. If you shut that person out (which we seem to do when we are in pain) It only drives that person farther away, because in there mind they feel helpless and feel as if we don't need them anymore which is far from true. So they tend to start backing away.

I was a newlywed when I was Dx, so it was very hard for us, but I have learned no matter what, to always talk to my husband and let him know just what I was feeling, He said that has made him feel more connected to me and more understanding of my disease.

As far as the intimate part, that comes rarely, but we do a lot of snuggling and touching and we always hold hands, kiss and show our emotions to one another. And I always tell him how much I appreciate everything he does for me. Which in turn he tells me the same, which we know that I don't do as much but we always compliment each other.

So keeping the lines of communication open I think is the most important thing to a healthy realtionship and if he cannot understand what you are going through and is not willing to understand it and help you through this, then it is really time to move on.
Because IC alone is very stressful, and you do not need anymore added stress.

I hope everything works out the way you want it to..

[hdb1982]

I know this can be vey difficult. Have you given him any infrmation on IC and how it affects people. The symptoms etc? If not that may help him understand more. There will be days where you will not be able to do all the things you used to be able to do but there will also be days where you can. Even if you can;t do all of those things anymore it doesn;t mean that you aren't the same person he fell in love with. My husband has said many time that IC is the true test to see how commited someone is to the other. He HAS SAID, JOKIGLY OF COURSE, that I have taken full advantage on the for better or worse and for sickness and in health. At first I was so concentrated on informing myself that I forgot to include him and help him understand too. It took one big fight when I yelled that he just don't get it and he said how is he supposed to get it if he doesn't even know what it is. I think in my case he isn't upset that I have it it is just hard for him b/c he has to watch me suffer and can't help me.
Maybe you need to set down and have a heart to heart with him and see where he is at in things. If he will be there to support you no matter how bad it gets. And if says he don't think he will be it is better to find out now than 2-3 years down the road. But try to remember this is just as confusing for him as it is you. It took my husband a few months to accept it but once he did he has been great. I am sure you are a wonerful person and you deserve someone who will love you no matter what even on your bad days. I think I have heard someone on here say before that "if you don't want me on my bad days, you don't deserve me on my good ones" I find that so true. Ask him to get involved in your doctors appts and ask you dr to explain the disease to him, print him some info from here and other websites. Often times when you are first dx'd it is the worse. Eventually you will find a good combo of meds and self help stratagies that will get your IC under control and each day you will get back pieces of your old self. No matter what, keep your head up looking toward the future and better days. They will come. Maybe this is the test your relationship has needed since you said he doesn't want the marriage thing again. Even if he doesn't want marriage it doesn't mean he doesn't love you and isn't in it for the long run. Just open up and ask him because he is the only one who knows how he feels. I hope this helps and I pray things get better for you. This is very new to you and is a very scary thing. We are always here no matter what. ~ Heather

[Sonat]

Dear whispercalm,:hi:

I really agree: It is important that he is informed about IC, the way it can affect people, what causes flares and especially how you feel during a flare etc.
I am 25 years old and have been living with my fiance for a few months now.
IC therapy has really helped, because I can enjoy activities (like going to the movies, swimming, fitness) again.
I feel for you, especially since the time directly after diagnosis was probably the worst time in my whole life (I used to cry and study for college like hell while I thought I was going to die).
Once therapy kicks in, you`ll start feeling better, which will positively affect your relationship.
However, it is important that you tell him how you feel and how it affects you.
Sometimes, when I´m flaring really bad, and I might be a little...well, tense and touchy (ok, really *****y, :loco:), I tell him I´m sorry and that I´m in pain right now. He always tells me how important that is, because otherwise he thinks it`s something personal.

He is dealing with IC really well, which is probably one of the reasons why this relationship has lasted. I can`t change my IC condition, so being with someone who couldn`t deal with it would be really frustrating (me dealing with it can be exhausting enough).:mad:

You have to take your time. I hope therapy kicks in really soon.:pray:
Doing moderate sports like yoga or pilates or swimming might relieve some stress and tension and help you feeling a lot better.

Hugs:)

Sonat

[Cricketmk3]

I understand exactly what you're asking, my boyfriend and I are 45, but all you can do is be yourself, communicate with him, include him, and love him. I agree with Tracey, it's not totally your job to be encouraging and uplifting. With IC as well as any other obstacle in a relationship, it's give and take. If he feels the need to stop encouraging and uplifing YOU, then say "bye bye" and find someone who can "deal" when things get rough.

[whispercalm]

Thanks for the replies. I haven't been on here for awhile. Been discouraged and it has been about all I can do to get to work and back. I drive 37 mile each way. Things between us are the same. He does try to understand and cares. This waiting game is getting to me though. We will have been together 3 years soon.
I've been trying to find work close to home without any luck. Have to make my current salary at least. I have alimony ending in October and then I will be really hurting. I have been checking into online schooling..thinking of medical billing and coding or transcription. Hard to know what is a legit program.
ANYWAY, I've come to the point that as much as I love him, I can live without him too. I don't want to call it quits yet, but I have a feeling I might have thrown away three years of my life. I mean if I can heal after 22 years of a bad marriage and only been divorced 7, why can't he move on after being divorced 15?
He does seem to be very sensitive to my moods...such as if I am having a flair. I have also come to the conclusion... as you all have advised, that if he cares, he will have to learn to live with it, as it is part of who I am and I can't make a flare stop.

[lisabar36]

Hi! I am sorry your feeling this way. I think you got some good advice and always keep the communiction open. I had this happen with me and my boyfriend not to long ago, I felt like he was ignoring me, when he felt like I needed and wanted to be left alone and when we talked about it things were great. But we were not communicating, in turn we both had our feelings hurt without the other person knowing. Also for online classes, I am taking online classes and I take them directly through the local college here so I know they are legit. If you have a college close by you, they should have online classes. Its works out great because I can go to the college for whatever I need and its close by and I did take a class there at the college, but I graduated nursing school in 1995 and I like it much better online with my health issues, I like it better online regardless, it beats the stress of having to rush to class, park and walk a half a mile, in the cold, I am 37 now, not young like I was back when I went to college. It was fun then but now, I rather do it online. Take care and I hope everything works out for you. :) Lisa

[nostalgic48]

I have had IC for over twenty five years, and I wanted to write to you and say please, please, please, take care of you! You need a man who will be there for you and if you are inclined to want marriage, find one who is also. I wasted a lot of years on a man who told me from the beginning that he didn't want to get married. I didn't listen and when it finally dawned on me that he was serious, I moved on. IC is manageable, and you can still lead a full and happy life. The stress of being with someone who wouldn't be there for you will cause you alot of anguish. I wish you the best...I have been in your shoes and understand.

[monica78]

I was diagnosed when I was 21 my now husband and i had only been dating for a little while. Now i am almost 30 and I have been so blessed to have him. I know that it is frustrating for him too but he still hangs in there with me. The only time he gets upset is when i am doing way too much for other people and not taking time for me, he knows that when i do this i always end up with a bad flare. Mine is flaring right now and he has been great about it as usual. He is the type man that his actions speak alot louder than words. He doesn't talk a whole about things but he is great about taking care of me. When I feel good I try to do little things for him because he has been so good to me. You need someone who is there for you rain or shine. You deserve somebody that will hand in there through the thick too. I really hope it works for you but you have to be healthy and happy for you.