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hey all. i dont know how many ppl can relate to this, but going through this and keeping relationships strong is a whole nother stress issue to worry about and deal with.my boyfriend and i have been 2gether 6 years. we always had a pretty great and loving relationship,of course not perfect. hes really the best guy i could ever ask for, he means everything to me. but latley me being sick has just takin such a toll on everything. im not the same person right now,and probably wont be when im done.my boyfriend is doing all he can to deal with me but its just made him so unhappy and depressed as well. hes only 21 so i dont know how much i can expect from him? i mean we were going to get married soon,but i just feel so guilty for putting him through this hell train with me.ive been going through alot of emotions latley(i cant control them i just cry out of nowhere) and i cant get him to understand that im not choosing to be like that.its hard for us to be together b/c all i do is break down when im around him. it hurts sometimes to even see him, i feel like a knife is stabbing me in the heart b/c im so afraid we wont be together b/c of this illness.i find myself distancing from him on purpose so save my self the heart break. i guess i just need to find a way to hold on to this relationship so we can live a happy life when im better. sorry i just had to let it all out,this truley is the only place where i can trust ppl who understand. if anyone has any advice, its always much appreciated:) i hope everyone is doing well
I can totally relate to how you feel
My hubbie is there for me but I do break down in front of him atleast a few times per week. I know he cares about me and this whole illness makes him sad, but I think since he is not sure what to do or how to help me, he feels helpless to help me. I think at times he is just numb to my crying, like oh there she goes again. It has to be hard to see me go through this and not know what in the world to do for me. Something else that really bothers me is I have not been able to sleep in the same bed with him in about a year and a half. Even when I try, my mind will not go to sleepp, but then I get in the bed in the guest bedroom and fall right to sleep. This not being able to sleep in the same room really makes me sad. It all started with IC. I used to sleep in the same bed every night and had no problems whatsoever. Hang in there and just let your man know that you do appreciate and love him. One day we will feel so good and these silly arguments that are underlying due to this illness, will hopefully phase away.
Relationships
When I first got IC, I was so depressed at talked about it all the time. My husband did his best to be supportive but I could tell it was wearing him down. After I found Matia, I had hope that I could get better. I found the strength to start aplying the relationship principles I had learned. The most important thing for me was to start becoming a positive person again. I started only watching positive TV shows, music, books... Although we have a few philisophical differences, I even started watching Joel Olsteen LOL. I also started focusing on changing my thought patterns. I began to visualize a great future with my husband and started talking about getting better. My husband got really interested in healthy eating and was so encouraged about my new outlook on life. Of coarse I have bad flare days and am prone to cry too. I try to keep my positive to negative ratio 5 to 1 like the marraige books say. With guys, it seems like physical affection goes a long way. On the days I feel good, I initiate sex. On nights I feel poor, I just find a quick way to make him happy. Your boyfriend sounds like a quality guy, which are hard to find these days. I would start to think of your healing process as a journey that you are going to overcome together. Start talking about your shared dreams and your wonderful future. P.S. I leave for Califonia tomorrow!
Support for the men
I don't know if these exist, and if your partners would be open to it, but a support group for the men would be a good idea. I think a huge factor is that the partner (& sometimes caretaker) suffers too but feel they "can't complain" or even talk about it b/c they're not the ones who are sick... they're facing a MAJOR life stressor yet there's no outlet for them, so things get bottled up and even if they're the most loving and supportive and not going anywhere, it can be emotionally/psychologically wearing. Esp. if you're at the beginning they're also stressed b/c of the impacts of the illness and treatment on the relationship and their futures.... thinking what if she doesn't get better? what will happen to our lives? can we ever have kids / how will we raise the kids we have? etc. etc. And then there's the element of them not understanding 100% b/c how can you really until you've experienced this awful condition?
Just as it's so helpful for us, I think seeing / hearing others in the same boat would make them feel less alone, esp. when like us they're seeing the rest of their friends go on with their lives and feeling so left behind. And some have the added financial burden to be sole provider now and maybe to pay for treatment too. I didn't want to admit it when I was really sick b/c I was so sick and the focus was on me, but he was really going through a lot too.
Maybe Matia would be open to doing a talk to the partners, then allow time after for the guys to meet and discuss. I hate to ask her as she does so much already, but if she charged I'm sure people would gladly pay - I would! I will ask.
you
you are so right. it really is tough for the guys too. but, it's also hard for me to always be the one to try and explain everything to my husband (like why this food and not that food, why these herbs, why the ups and downs, etc.) because i don't always get it myself. plus, how can i reassure him that this program makes sense and will work when i worry about that myself all the time?!? it would be great if matia would have a talk that explains everything for them, but i can't honestly say my husband would go. he is so stubborn and would just say he is fine with me explaining everything. but maybe if it was a q&a that was more focused on the technical medical side rather than the emotional/support side, he would be game. i just know that if it was a conversation about relationships, sex, emotional stuff, etc. he would NEVER do it! this is where i really think women shine as the superior breed - i feel like often we are much more open and able to discuss things like this.but, this is a great suggestion - even if my husband doesn't attend!
men support
I was actually talking to my husband about this last night. He is a bit like your husband aboros5 in that he tends to shy away from mega heavy lets talk about our feelings stuff. I mean he is in touch with all that I just don't see him participating in that way in support group in a public way like we do. However he did seem open to posting or writing up a kind of "husband/partner support guide - or rather a reallly since I'm not totally better yet maybe just posting his experience for the past year and as an outside observer kind of testimonial on what he has seen improve in concrete ways in his wife kind of post. He was an initial mega skeptic of the treatment I have chosen but has been ultimately supportive especially seeing me happiest I have been in a long long long time. ow do people feel about a post like that? I don't know how to include that on ICAMA as this is kind of our space and I wasn't sure about if I should open it up like that. Maybe that could be an additional feature for ICAMA? It would be interesting. I think though that patient confidentiality might be an sensitive issue to consider. should I have him write up a post addressed to the dudes out there supporting? Also I love the idea of a formal conference call partner/ question and answer. that sounds super cool. It would be amazing to have it come from the source of Matia and not my probably inaccurate explanations. Maybe we can gather up a set of questions for her and then see if she can address them in layman's terms reagrding treatment. I kind of forget how much I've learned and take that for granted when explaining such things to my family. - cool idea!mary
Update
Ok, so for one, I broached it w/ Matia and she's game. Only thing is she would have to charge for it, and I don't blame her one bit, she gives so much for free already. Plus this is so valuable esp. for those newer in treatment, would gladly pay anything to have their partner "get it" more.
Aboros & Honeybee -- to your points -- yes, smart, it must be under the guise of "informative, clinical talk with q&a after." If we advertise as this, she can still slip in the emotional/support stuff at the end once they're more comfortable. And the q&a aspect should be a draw too, since I'm sure many have questions they won't even ask us and here they know they can ask anything.
Would you gals be open to getting together a preliminary sheet with me on topic areas? Some of what you said already are good to add.
Honeybee
About the support guide online, it might be good for Matia to add a section for partners (at the top next to IC User Forums, Kids, etc.).
There, the basics of the partners talk could be written out as the main guide. Then, also on that page could be links to different partners' stories, done like the success stories, and totally anonymous if preferred. They could speak to both the difficulties of life for the partner during IC illness & treatment and/or to the light at the end of the tunnel for those who are close/there (kinda like you said your husband would do). Main point being, a partner wouldn't have to wait until we're better to write a story. In fact an integral part would be those writing to just how tough it is, how to hang in there, how to support your wife, etc. so partners reading it don't feel so alone, get some questions answers, learn how to be more supportive and have more hope. Likely, it may be hard to get many of our guys to do this, but if even a few do, that's something b/c it will be read by many more.
family
I talked to my bf about this he doesn't think it's a good idea. He thinks that it has good intentions but Men like to fix things and if they can;t they just wait for it to go away. I think having it geared to familys not just men would be better. Just my opionion tho
Nicole