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  • Tell me I'm not crazy, this is hard

    I love a man with I.C.
    I can't talk to him about this; his life is hard enough without me complaining about how hard it is to love somebody with a disability.
    And besides, how selfish of me to think about myself when he is the one going through all of the pain…right?
    I’m not by any means here to complain about I.C. patients, I think I know more about I.C. than he does, that’s how invested in his recovery I am. I just needs somebody to talk to, so I can keep on keeping on, somebody who knows how hard this is.

  • #2
    I think it's good for you to come here for support to help you understand. I know it's difficult for you, but it's even more difficult for him. It's okay to talk with him about his disease when he wants to talk. Think of how you would feel if you were the one with interstitial cystitis --- how would you like him to deal with you? That's how you should communicate with him.

    Warm encouraging thoughts,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      It has to be rough on both sides of the aisle! I think it's wonderful that you are here. So many are in a relationship where their partner is not invested!

      I have to agree with Donna's comment about trying to put yourself in his shoes. That's always good advice. Yet we all know that no two people are the same. We all have different ways to deal with our struggles, so imagining what you might do, feel, or react, may not always translate well to another.

      I guess all I can say is to try to keep the lines of communication open. Your guy is affected by this and if you're a couple, -so are you!

      Vicki
      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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      • #4
        Thank You

        Thank you ladies for taking the time to respond. I hardly have to imagine what he might be going through, I've lived a life with pelvic pain, for years. With that experience it just kills me knowing what he is going through. I was kind of looking for some different support, maybe knowing what it means to you to have support would help me.

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        • #5
          Originally posted by NotanICpatient View Post
          maybe knowing what it means to you to have support would help me.
          Hmm, where to even begin on that one!

          Knowing that someone believes and understands when I hurt helps so much. I know my hubby can't do a thing about it. I don't expect him to. But after so many (including doctors) who have acted like I'm faking, exaggerating, or having a hypochondriac episode, it means the world for me to have someone just say, "I know." Because sometimes I begin to question my own sanity myself!

          Knowing that I'm not alone calms me. Life (and IC too) can be so unpredictable but my husband is like an anchor. The security I feel lessens the stress of life. When I worry he puts things in perspective. I mention this because from an IC standpoint, when I get wired over something my IC tends to flare. His support actually helps to keep me better.

          To sum it up, his support makes all the difference in the world, both physically and mentally. I hate to think of where I might be without him to lean on.

          (I need to make a mental 'sticky note' reminding myself to thank him more often for just being him)
          "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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          • #6
            Vicki

            That was so motivating for me, thank you so much, I really needed to read something like that. I have been kind of down lately because he is in like week two of a flare up. I just miss him, and us you know? And I know he feels the same way. Nobody said IC was easy, for anybody, and I know this is about him & not me, which is why I came here for support, so I could continue supporting him. Thanks again.

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            • #7
              Originally posted by NotanICpatient View Post
              I have been kind of down lately because he is in like week two of a flare up. I just miss him, and us you know? And I know he feels the same way. Nobody said IC was easy, for anybody, and I know this is about him & not me, which is why I came here for support...
              You know, I kind of think it's about both of you. You are going through something difficult too. My husband and I each have chronic illnesses, so we have to be there for each other at times. I feel like you perfectly described how I feel about "missing him" when he is ill.

              Here is my attempt at more encouragement for you: support from my husband is frequently just my WHOLE world when I'm in pain. It's a reason to not give up...so believe me you are making a big, big difference to your husband, probably much more than you know. One of the most difficult aspects to dealing with IC is the mental side of it. Having a supportive spouse really goes a long long way towards warding off all the depression, anxiety, and stress that happen during flares...and if you can help make the stress go away, that could even literally help to lessen your husband's IC pain.

              Also, I thought I would pass on my favorite thing that my hubby and I have learned about cheering each other up (and it is actually counterintuitive): the very best thing that either of us can do when one of us is feeling sick and scared is to just "go there" with our spouse to his/her depressed place. It helps soooo much when my husband stops TRYING to cheer me up and just exists in the sadness with me for a while. Oddly enough when he tries to cheer me up it backfires, because I feel like it belittles the situation. When he is just sad with me though, I feel validated and understood, which then cheers me up (ironically) and makes me feel brave and strong enough to deal with all the pain. I think this is kind of a common thing for people with chronic pain in general - to get cheered up by being sad with someone.

              It is so wonderful of you, BTW, to be such a loving and caring wife for him.

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              • #8
                First let me just say that having my honey to help and support me has been the most effective part of my treatment. I look on here all the time and see where couples have divorced over I.C. and I feel so thankful for everything he does for our family. I know it's not easy, I spend a lot of time wondering how he can put up with it all. I spend so much time trying to make myself better sometimes I don't stop to make sure he knows how much I treasure him. My biggest fear is that he is just gonna get fed up one day and I'll be alone with my disease.
                Even if he doesn't think to tell you, you're absolutely amazing. Figure out who you are now as a couple not how to get back to where you were. I had more to say but I just got a call from family and I have to get a pet cremated. Just don't hold onto any bad feelings about it. Even if you can't talk to him write in a journal. Negativity can easily turn into resentment and bitterness.
                Jamey

                dx
                IC, endometriosis, cervical dysplasia, bi-polar, trichotillomania (hair pulling disorder), scoliosis, fibroid breast disorder, chronic fatigue, arthritis in hands, temporal lobe seizures
                meds
                buspar 30mg, atarax 100mg, norco 10mg 30/week for pain, vimpat 100mg 2/day, trileptal 600mg 2/day
                flare strategyestrace cream, lidocaine jelly, and ice pack on urethra. ativan .5mg for severe flares only

                Life's not about waiting for the storm to pass. It's about learning to dance in the rain.
                (and looking for rainbows)

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                • #9
                  First of all NO you are not crazy. Your love has a lot to be grateful with you showing so much support. The ladies gave you some great support here as well.

                  What helps me with my husband is when I'm having a really bad day is when he tells me I'm sorry. What can I do for you. Sometimes it was just helped a lot for him to just hold me. Sometime, I didn't know what I needed

                  I imagine both of you are really scared and confused. It takes a while for it to be all sorted out. Ic is life changing for the both of you.

                  I cannot fathom what my world would be like without my loving caring husband. He is my rock.

                  When I was first d'xed I was really scared that my husband would leave. We had just gotten married a fw months prior and I use to tell him, "you didn't sign on for this." He would reasure me that IC was OUR disease and what affected me also affected him. Looking back I really needed that assurance I guess.

                  He not only verbalized his care and concern, but he showed me just how much he was a part of the nightmare of my IC by going to almost all my appointments, asking questions and just being present. That meant the world to me.

                  Many hugs and blessings to you both. He is very blessed to have you. That's the way I feel about my husband.
                  MARY


                  Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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                  • #10
                    I think it is so great that you are here. I agree with what the others have said. Unfortunately, my husband is not supportive at all, and it hurts alot. I think for me, it would mean alot if he would just acknowledge that I am hurting and ask if there is anything he can do for me before he heads out the door, (or pop his head in the door when he gets home and check on me to make sure I am okay after I have had a rough night, throwing up all night from one of my numerous UTIs, or if I have just been up hurting or going to the bathrooom all night.) Just to know someone cares means more than anyone would ever realize.

                    I DO realize that people get worn out when it is a chronic disease. I remember when we were dating I had the flu or something and he sent flowers. But, when I got a chronic disease that is much more debliatating, it is like people just forget or think that you no longer need sympathy or something. Like when I am in the hospital now, he never sends flowers. He says it is b/c I am in there so often, (sometimes 7 or 8 times a year). But, does that mean they would be unappreciated now? Not at all. My best friend (from here at the ICN), still ALWAYS sends them, (God bless her!) But, she is the only one besides my Mom that always remembers me then. It makes me sad. It really does hurt. But, you cant make someone compassionate. They either are or arent. Obviously you are! Just the fact that you came here indicates that! (My husband has never once gone to a DRs appt with me or come online to read anything about IC. He says that he doesnt need to read anything about it, or hear about it from anyone, that it is my job, not his. (Nice guy, huh?)

                    So, anyway, whenever I see someone like you come on here it warms my heart that there are people out there like you who DO care and are compassionate.

                    My main advice for you would be to always "put on your own oxygen mask first", (as the saying goes.) By that, I mean make sure that you get your rest and take frequent breaks and go out with your friends, and make sure you get the support YOU need. Anytime you start to feel burdened or resentful in anyway, that should be your clue that you are overdoing it and it is time for a break and a night out with friends to recharge your battery.

                    Something else too, as you read here, you will learn how important the IC Diet is. It will make a HUGE difference for his health and how he feels if he follows it. I am betting that he probobly doesnt follow it that well if he isnt that knowledgable about IC. So, if you take the initiative there and try to cook IC friendly meals, (and try to keep no-no foods out of the house and not eat them in front of him), it will help him alot!

                    Thank you for taking the time to learn about this. I know he will appreciate it more than he will ever be able to express.

                    Please come here anytime you need support. We are here for you too.

                    Kind regards,
                    Amaranthe
                    I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                    D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                    Meds: Estrogel (due to total Hyster)
                    The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


                    (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                    John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

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                    • #11
                      Hi, you have been given alot if good advice. My husband used to be very supportive and concerned. He's grown tired of it and rarely asked me how I feel or offers any kind of compassion or concern. It really hurts, I feel abandoned by him and now it feels like he has put a wall between us. Just keep doing what you are doing and if you ever feel like your getting tired of his situation, put yourself in his shoes and keep caring no matter what.

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