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Once in remission, how do you stop focusing on your condition?

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  • Once in remission, how do you stop focusing on your condition?

    It occurred to me today that there are times lately where I feel my symptoms are becoming milder. The problem that I have is, I can't seem to let go of the obsessive thoughts of things not being right down there and can't seem to stop worrying about the next wave of discomfort.

    This seems to keep me in this cycle I can't escape from. I have OCD so obviously this doesn't help things at all. I feel like I have trapped my brain in to my pelvis and can't get it free. As if this is my new normal. Even when I am virtually pain free, I am still mentally checking to see if it is there or not and I feel this may be bringing the symptoms back. I try distractions, but it only lasts as long as I'm distracted. I'm very frustrated by this as I'm sure many of you can imagine.

    Does anyone else struggle like this and prolong the possible remission process?

  • #2
    Yoga can really help put you back in your body and help you notice what is going right or getting better. Guided meditations are also good for relaxation and positive body awareness.
    Kadi

    -------------------------------------------------------------
    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!

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    • #3
      It took me a long time, but if I wake up feeling good, I enjoy the day --- I refuse to worry about tomorrow --- I do stick with my diet and be sure to drink enough, but other than that I try not to focus on my bladder all the time.

      You'll get there too.

      Sending gentle hugs,
      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.

      Patient Help: http://www.ic-network.com/patientlinks.html

      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

      Comment


      • #4
        I am the same exact way. And i wondered if anyone else was like that too. I am OCD but i constantly think about my bladder even when it is feeling kinda good. Everything i do makes me think about it. I feel so limited because before i would just do whatever and not think about it. whether it be an adventure or exercising or trying something new. now all i think about is my bladder and it drives me nuts. my family hates how i am now. and so do i. but i cant shake it. i am so scared i am going to have the agonizing pain i used to have that i just sit inside all day. i feel like even if i get to 100% i am still going to worry. anyways, just wanted you to know your not alone at all!

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        • #5
          Scared: You might want to try some "baby steps" first --- try just going for a short walk --- or a short shopping trip. If you're not able to begin doing things, I suggest you talk with a counselor to help you deal with your IC.

          Sending gentle hugs,
          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.

          Patient Help: http://www.ic-network.com/patientlinks.html

          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

          Comment


          • #6
            I too am like Donna--If I wake up without any pain than I just focus on today--not tomorrow or the day after. Lately though my pain has been in my back (did something to it back in April--finally getting around that I can now work full time on most days). As to my IC-pretty much the same thing, again haven't had too many problems with it as my new pain doctor took me off my pain meds and put me on cymbalta--boy, the difference that has made for me.

            Comment


            • #7
              So I guess I'm not alone feeling this way. I don't know if you realized I'm a male with this condition. Not that it matters, but just wanted to let people know it can affect both sexes.

              It's not even so much the pain that gets to me the most. It's the constant nagging urgency sensation and the disappearance of normal voiding patterns. To put it bluntly, I haven't had what I consider to be a normal sensation of peeing (full bladder, strong flow, good volume, etc.) in months and since every day starts this way, reality sets in real quickly reminding me that my life is nothing like it used to be as a result of this.

              The few windows of time here and there when I feel almost normal are short lived and the rebound effect when the sensations return really bring my mood down, because I constantly think that it's clearing up only to be let down again. I am trying to stay level headed and avoid highs and lows, but as we all know, this is difficult.

              The hardest part of all this in my opinion is that all the other every day stressors we are accustomed to dealing with in life are much more overwhelming when IC is coupled with them. Everything seems a lot more magnified. I just hope one day I can adapt and be comfortable physically and mentally again.

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              • #8
                So Frustrated,

                I so hear you!! I could have written your post myself!! Except I am not in remission

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                • #9
                  hi donna thanks for your input. your right i want and need to start doing things. i just dont like to mess with things. Its like if i feel okay i dont want to mess with it. but then i end up just sitting around all day so its not really a life. i used to play soccer and would LOVE to do it again but i just feel like im so limited. i just dont want to get the pain i used to have.

                  Comment


                  • #10
                    I have been in some type of remission for a good while now and I still think about my darn bladder every day! It's like this thing has been permanently etched into my brain that at any moment it could all come back. I'm wondering if these thoughts will every go away. When you are constantly reminded of it daily due to the diet it's really hard. Every time I go out to eat it takes me forever to scan the menu, ask the waitress- "Are you sure there are no tomatoes, vinegar, or citrus in this dish? Are you absolutely sure?" " Do you have ANY decaf teas available?" and "Why not?" I think I'm driving everyone crazy, including myself.

                    Comment


                    • #11
                      I feel great 96% of the time now. There are still plenty of days I worry. For me, I have realized if I stay close to places I am familiar with.......I am comfortable and think less of my bladder. (And usually there is a bathroom close by too!!)

                      You'll get there.......I've had this dx for more years than I care to count and am still learning.
                      Tons of support,
                      Jaime

                      IC angel helping families in need for the holidays. [email protected]

                      Comment


                      • #12
                        Male perspective

                        I happen to be male as well. When I haven't had enough to drink, so I know it's gonna burn, and sit down to urinate (which feels "wrong", but helps to relax) and when I start the joints in my ring finger hurt. Really. How could anyone but one of us even conceive of that?

                        I also remember being a kid. Drinking a 44oz soda. Peeing like a racehorse later. I call myself in "remission" but I wonder what the rest of my life will be like? I'm down to being able to go hours between bathroom visits, and I can have most foods again, so I'll take it, but getting rid of the "brittle" feeling would be heaven.

                        Anyway, I'm with ya.

                        Comment


                        • #13
                          mary

                          Originally posted by mary124 View Post
                          I too am like Donna--If I wake up without any pain than I just focus on today--not tomorrow or the day after. Lately though my pain has been in my back (did something to it back in April--finally getting around that I can now work full time on most days). As to my IC-pretty much the same thing, again haven't had too many problems with it as my new pain doctor took me off my pain meds and put me on cymbalta--boy, the difference that has made for me.
                          HI Mary I am moving to Houston soon. would you pease let me know what cymbalta is . And the name of your pain specialist in Austin. my e mail is [email protected]

                          Comment


                          • #14
                            I so get what you all are saying. I'm with earthlady -- I don't know if these thoughts will ever go away. I would say I'm 99% better on Tagamet, and I thank God for that every day, but in the back of my mind I wonder "What happens when it stops working? Will I be bed ridden again? How can I go through that pain again?" I guess every morning I like to torment myself like that.

                            I have wanted to ride with my 5-year-old on the bike trail all summer; finally got up enough courage to do it the day before yesterday, because I was afraid it would flare me. It did not, and I'm so glad I tried it!! Now we have all fall we can do it, Lord willing!

                            So I guess the only advice I could give someone personally, is first, have a plan of what you will do if you have a flare or cause yourself that terrible pain. My doctor wrote me a prescription for pain medicine that I just take in the case of a flare, and it is comforting for me to have that, even if I don't have to use it. And then remember where you came from!! You and your doctor have gotten yourself out of that horrible pain before; if it happens, you can do it again. Have some faith in yourself! And finally, people with IC KNOW pain, don't we? We are intimate with a pain that I can only describe as being burned alive, from the inside out, and maybe we aren't supposed to forget that. Maybe we are supposed to take this pain and channel it towards a greater compassion and understanding of others' suffering.

                            I think we all need to give ourselves great credit for being so much stronger than we ever knew.

                            Comment


                            • #15
                              Hard to balance

                              I can see that having obsessive thoughts could be pretty terrible. I'm sure it really is hard to control. I'm not sure what you do with your other obsessive tendencies if you have them? Is there some kind of treatment that you follow for those other thoughts?

                              In a way though, the positive side is that you really work hard to take care of your health. I'm not obsessive but I have never forgot the pain I first had and that's what keeps me so strict on the diet. So it's a weird thing, because I don't want to forget and then get lax with the diet and have all that pain again.

                              I wonder if in time--I mean the longer you don't have pain, that your brain will eventually focus on something else. It might take a long time though.

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