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Using IC as an excuse for not doing things

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  • #46
    I have 2 grown sons and I have never let IC get to me in regarding to family,school activities, work, etc. My youngest who has been a godsend to me since I had OHS back in 2003 is just the greatest, can't say enough good about him. My eldest up till recently i thought he really didn't care one way or the other, till I overheard him talk to my sister about me and whatever is wrong with me-told her that he thought the world of me and thought I was a wonderful Mom and he is proud of me! My husband has been a big help in all of this as well. Even my co-workers/supervisor is wonderful never once has anyone said anything to me about my IC and other health issues.

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    • #47
      I am essentially cut off from immediate family support. They are 1000 miles away, it's just me and the hunie-bunny.

      We've been together for 6 years, and he has stuck by me through the worst, held my hand through surgery, and tried his best.

      That being said, people who aren't chronically in pain don't get it. I don't think he ever will. Just yesterday I got the "it's all in your head" jargon. He means well, and what his intentions are is "don't stress out, it won't help"....but it still hurts when he minimalizes it. His language is often cold, as if he is tired of it, that it is my fault.

      Additionally, he tries to tempt me in to normalcy. Like offering to take me out to resturaunts he knows I love, but can't have (like thai food...mmm) I have to politely decline repeatedly. It is another reminder that, no, I am not normal.

      I know it comes out of frustration on his part. He wants me to be better, but he can't fix it, so he shuts down. I know he only wants whats best, I just wish he'd pay more attention to how his reactions affect me.

      I don't really care what the other friends say, I tell them to shove it, and since they are mostly guys, they are fine, not emotionally invested. I think they also like the idea of the forced designated driver when i can make it out for a few hours.

      My family has stuck with me through it all. Even when most frustrated, they have supported me. My dad would sell the shirt off his back to try to fix me (I don't want that, but appreciate the sentiment). My mom has also suffered from illnesses that have rendered her incapacitated from a young age, and has been my rock. She always knows what to say to make me feel better, and that is something to be very grateful for.

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      • #48
        I know how you feel. I have been accused by friends and family members that i use it as an excuse. I sometimes wish that they could be in my shoes for a day.
        Cheri

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        • #49
          I know how you feel. I wish many people could be in my shoes for maybe even just an hour!!

          I have the same experience but a little bit flipped around. I am 23 and when I felt down about this the other day my mom made a comment, "Just be happy you don't have cancer!" This made me so sad and infuriated. Of course I know I could die from cancer but my urologist told me himself that often IC pain is worse then bladder cancer pain, and he knows because he sees both kinds of patients.

          My mom saw my face and immediately apologized and I know she feels bad now that she said it but really how can ANYONE judge the situation we are in?! It's pathetic.

          Like I want to miss out on things!

          the best to you all, kate
          best, Kate

          I am a generally happy 23 year old, newly diagnosed(Nov 2009), newly-wed living in Tampa.

          I graduated from college in Boston in May. And since then have been trying to get my pain regime for this disease under control!

          Medications currently taking:

          Elmiron (2 in the morning 1 at night)
          Benadryl (1 in the morning and 1 at night)
          Vesicare (1 a day)
          Prosed as needed

          I am constantly looking for alternatives to these medications to heal my body! I am open to suggestions (thinking about aloe, cystoprotek, accupuncture, etc) until then I am keeping my fingers crossed that elmiron works for me!!!

          I started PT last week....this consists of electro stimulation through my ankle of my prudential nerve.

          oh yeah I also practice yoga every day I can and am wishing I could work out like I used to!

          I am lucky to have an extremely supportive husband and family

          Thank you all for your help and support! It means more than I could ever say in words

          "Standing on a hill in my mountain of dreams, telling myself it's not as hard as it seems." -Led Zeppelin

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          • #50
            I am so glad I have been married way over 30 +++++ years to a wonderfull man that thinks the world of Me.

            He bends over backwards 24 hours a day to make sure I am Ok and if I need help with something.
            My son is the same way. He goes out of his way to help me.
            Never a Foul remark out of his mouth.

            If your family really LOVES YOU , they will Not treat You poorly.
            They will bend over backwards to help You.

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            • #51
              My husband does this thankfully! Don't know what I would do with out him....
              best, Kate

              I am a generally happy 23 year old, newly diagnosed(Nov 2009), newly-wed living in Tampa.

              I graduated from college in Boston in May. And since then have been trying to get my pain regime for this disease under control!

              Medications currently taking:

              Elmiron (2 in the morning 1 at night)
              Benadryl (1 in the morning and 1 at night)
              Vesicare (1 a day)
              Prosed as needed

              I am constantly looking for alternatives to these medications to heal my body! I am open to suggestions (thinking about aloe, cystoprotek, accupuncture, etc) until then I am keeping my fingers crossed that elmiron works for me!!!

              I started PT last week....this consists of electro stimulation through my ankle of my prudential nerve.

              oh yeah I also practice yoga every day I can and am wishing I could work out like I used to!

              I am lucky to have an extremely supportive husband and family

              Thank you all for your help and support! It means more than I could ever say in words

              "Standing on a hill in my mountain of dreams, telling myself it's not as hard as it seems." -Led Zeppelin

              Comment


              • #52
                I've never been close to most of my family. However, I have a twin sister and she is my absolute best friend in the whole world. She helps me in any way she can. When she cooks for me, she makes sure to not use any ingredients I can't have. She never minimizes anything. She's the best!
                -24.

                -Started having symptoms in May 2009.


                -Doing pretty well on diet alone.

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                • #53
                  IC is what is called an "invisible disability". If someone is in a wheelchair that is more obvious. I found an Invisible disability advocate website with resources such as books that address this problem. In fact one of the books even has the title, "But you Look Fine. Here is the URL. I hope it is helpful http://www.invisibledisabilities.org/
                  If you keep a green bough in your heart
                  the singing bird will come.
                  http://www.obsidian-sun.com/

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