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Coping mechanisms...

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  • Coping mechanisms...

    I haven't been officially diagnosed yet but am 99% sure I have IC: urethral burning, pelvic pressure, VV, etc..

    I am having some difficutly accepting a life with the ups and downs of IC. I was a very active person before and it seems like I hit the brakes at full speed. Can anyone share some of their coping mechanisms. I would like to know how you get through the day at work when feeling uncomfortable. What kind of self-talk do you give yourself to tell yourself the future can be better. I know many people go on and lead very productive lives, have babies, get married, travel, etc.. I just keep thinking I will wake up and this is all a bad dream (gosh, how I miss eating spicy ethnic food!). Thanks in advance for sharing and understanding!

  • #2
    It's difficult to accept the change in our life when this happens. I'm not even sure what my coping strategies were to tell you the truth. Some nights I would just tell myself to just focus on getting through the night and worry about tomorrow later. After experiencing a few flares that came and went I would tell myself that the flare will end like it usually does so that my anxiety didn't go sky high over the fact I thought it would be forever. I eventually was prescribed something for anxiety and saw a counselor. Most of my worst fears were never realized though and am now in remission with slight frequency at night. Ruminating over how bad it could get was the worst thing I could have done but I didn't see that in the beginning.


    • #3
      This is a good question. Over the last 8 years with IC, I've definitely developed certain ways of looking at things that make life with IC more manageable...

      1-Taking each day as a separate unit. Not thinking too much about the future or the past, but "what can I do today?".

      2-Maintaining an attitude of appreciation for the people who are kind or helpful to me. I encountered a fair number of jackasses when I first got IC and the good news of that is that it makes me now very grateful for the people who are understanding. I tend to express that appreciation a lot more freely now and tell people "Wow, that was really nice of you to do that & I appreciate it!"

      3-When facing the limitations of IC, trying to find the essence of the "lost" activity and participating in it differently. When I was very sick, travel was out of the question, but I could still learn a language, could still read stories of adventure, could still meet people of other cultures and ask them about their countries, traditions, etc.

      4-Remembering that getting a treatment plan is, for many of us with severe IC, a time-consuming process. It took a long time for me to "recover" my life, but I now have back most of what I missed when I was at my sickest.

      5-Getting support. I did not find much support from traditional therapy. I tried two counselors, but they didn't understand chronic pain, and I left their offices annoyed. I found that a medical social worker was super-helpful. A nutritionist was great (I did have to try 3 before I found one willing to really look at the IC diet and my food allergies. The other three just gave me their same speech they gave all their clients, most of which was useless to me, and made it very obvious they had not read the IC diet I sent to them a week before my appointment.) My church provided the best support of all with someone to pray with weekly and pastoral counseling about grief.
      Family and friends weren't enough, I burnt them out. I needed people who were trained.

      5- Come here often and post questions, request support, and give support to others. It gives meaning to an otherwise merely upsetting situation!

      6-Read books on dealing with chronic illness. Other people have walked this path before and can teach us a lot.

      I hope that helps a bit.

      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.

      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest

      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!


      • #4
        I think what helps me most is living today for today --- if I feel good, I enjoy the day. When I have a flare, I try to figure out what brought it on, but I also know that the flare will pass and I will have more good days.

        Once I found effective treatment options and which foods and drinks are a problem for me, I also found that I feel good most of the time.

        Warm hugs,
        Stay safe

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        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.

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