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  • Communication.......

    What an horrible Easter Night, after a wonderful Easter Day......I got sick, hubby wanted company, I said no....blabblabblab etc. Same old crap, just a different holiday. Today we both ended up in tears. Last night was the first time that my hubby has accepted how much this fu*king disease DOES involve his life and how much of HIS life is being taken from him.....this is very emotional for me, and it's hard to talk about but I don't know where else to turn. He admitted to being depressed, which we all know men don't do, and totatlly confused as to what the future holds....and I flat out told him, that it DOES NOT hold me getting better. We talked about how important it is to communicate instead of hollaring and hurting each others feelings. We agreed to put this at the top of the list-to be taken care of daily. We even talked about him going to the dr's and getting some help for while with some anti-depressants {he had to do that once before).
    I thought that we had talked this thing thru over and over and over. I NEVER for one second thought that he didn't totally realize the wholeness of this situation. And, it hurts me so bad that he is hurting like he is. I have at least been grieving for a few years now - he has only now started. The guilt I am feeling is all consuming.
    He has been so good to me, and normally very very patient. To find out that he was still holding on to the fact that 'it' would someday get better just breaks my heart. Especially when my fibro is getting so much worse. I refuse to tell him about it because I cause him too much stress already.
    I want councelling for both of us so bad. There are things that need to be said and I am afraid to say them without the help of someone who is qualified in this sort of thing. I feel like at least if I were going to die, we could cope with that, because we would know that there was an end coming up sometime soon....with this, we could have another 20 years......and it's so totally unfair to him. So far, he refuses the councelling.
    I'm not on the pity-pot here. I am hurting for my husband. And, I'm hurting bad. He has walked around pretending that it was all going to get better, like how many of us have held on to that thought, and now, I've pulled the rug out from under him. Even IF they came up with a treatment for IC that would work for me, now that the fibro has moved to my rib cage - the pain is just as sever, it's just in a different place.
    We are both very comitted to this marriage and to each other. We love each other very much and most of the time we even like each other a lot too....BUT, I'd rather be in pain than watch him be in the pain that he's in right now, and there isn't a damn thing I can do about it. It just hurts so bad
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

  • #2
    {{{{{{{Teri and hubby}}}}}}}

    I don't know what to say except I love you guys and I am here for you....Love Julie
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author

    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........

    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter

    *Let's Connect!*


    • #3
      Teri- so much pain!!! I'm so sorry. I know you said he refuses counseling but maybe he would agree to just a one session consultation with the idea that if he wants to try it you all will and if he doesn't you won't. The consultaion can be about researching options. Try appealling to his logical mind. It's something you all have not tried- you don't really know what it could do or couldn't- it is an unused tool so why not pick up the tool and turn it around it in your hands and read the owner's manual (think fancy drill not screwdriver here) and then see if there is somewhere in the house of your marriage this drill/tool might be worth trying.


      • #4
        Teri - I hope things are better since this last post. I know a little how you feel. When my flare up was really really bad, my fiance would keep saying, "It will get better." or "It will go away, I know it." I finally screamed and said "Don't say that...It's not going to get better and it's never going to go away." I finally printed him all the research on this thing and he did read it and felt really bad. People don't understand this disease! I hope your husband will come around. What's really nice to hear and most important is the strong love & friendship the two of you have. It sounds like you two will work this out because your love is so strong. Men are funny about counselling. The only way I could ever get my ex-husb. to go was one I was ready to leave him and then he would panic and do anything. I'm sure my fiance now would be the same way. Maybe you can stress how important it is to you. If not, can you go yourself first and then see if he might start? I don't know...I guess I'm not the best person to ask for advice on this, but like I said, it was nice to hear how much you love each other. Not too many people that I talk to these days have happy marriages and that's why I really admire when people I meet speek highly of their spouse and their relationship. Please don't say it would be easier if you died. It would not... your kids and family would be devasted to loose someone they love so much. I know how frustrating your condition is. Can they take that fibroid out? Let me know, cause I am concerned for you and we all love and need you! Love, Sandra...hope you see this post!