How to deal?

[mcrabb73]

Does anyone out there have suggestions on how to cope with your bladder running your life? I know it shouldn't...but it does. Everything I eat or drink...I wonder...is this going to cause a flare? Or where is the closest bathroom? I swear I know where every one is in every store!

Also I would love suggestions on how people coped with their "normal" life being ripped away from them. I miss being "normal". I miss being able to eat pizza and drink diet coke. Please help. Thank you.:)

[kadi]

Hi,
The first year I had IC was the hardest. My IC is moderate-severe. In the beginning, I was voiding 60x a day. Could not eat, sleep, have any joy. All that was there was pain, pressure, frequency. And the emotional impact of feeling left out of parties & holidays with foods I could not eat, being unable to wear my own clothes & having to buy shift dresses. Barely making it through work each day & crying every night. It was so very miserable.

Over time, month by month, my doctors & I tested medications. Finally, I got a combination that worked. And then, I did a course of pelvic floor physical therapy & that helped too. Today, I am much much better. I work fulltime (most days without difficulty), exercise, wear jeans, travel, go to church & movies. Basically, I got most of my old life back. I'm not in remission, I still have some symptoms daily, I depend on my medications, I'm still diet sensitive, can't do as many things in one day as I used to, but I can live with those things.

How did I cope with the shock of sudden onset to chronic illness with IC? It took a lot of things to put me back together emotionally as well as physically...

1. Counseling: I talked with a minister pretty early on & he helped me see that God did not do this to me, that these things just happen, that God loves us & will help us go on. My church also sent me a Stephen minister, a trained lay person to talk & pray with once a week. I had phone sessions with a medical social worker who was skilled at working with chronically ill patients & he taught me to do many of the things I've listed below.

2. Reading: I read everything I could get my hands on about IC or living with chronic illness... These are my favorites.
"The Interstitial Cystitis Survival Guide" by Dr. Moldwin
"Overcoming Pain" by Allan Platt, et al
"The Chronic Illness Workbook: Strategies & Solutions for Taking Back Your Life" by Patricia Fennell

3. Reaching out to "safe" people, friends who don't judge you. Just because you can't do everything you used to doesn't mean you are not still you. If you can't go out to the movies, maybe you & a friend can watch a video at your house. Breakfast with a friend doesn't have to mean a restaurant , it can mean your or their kitchen.

4. Looking for the essence of what you love & finding a way to meet that need. My mom's friend who has mobility issues cannot hike anymore, but she can photograph the wild birds in her backyard (especially since she put out a birdfeeder!) I love languages & travel. Since it's now more difficult to do that (I do still travel, but not as much as I used to), I'm now learning American Sign Language - still a new language, new culture, new friends, but close to home & no foods I have to turn down, risking offending others. I listened to church on the radio when I couldn't go.

5. Keep a gratitude journal. Every day write down 3-5 things you are grateful for & they can't be the same as yesterday's. And look for at least something you are grateful for that has nothing to do with illness.

6. Find things to distract yourself. I took up making beaded jewelry, nature printing, and bead embroidery as a way to occupy my hands & mind since I was at home more. I also wrote notecards to faraway friends. I learned to cook IC friendly foods. Read a lot of magazines (couldn't concentrate well enough to read books for awhile).

7. Be kind to yourself. IC is incredibly stressful. Most people have never heard of it & cannot understand how one illness can affect every aspect of our lives. I lost a few friends in the beginning & my family relationships were strained. Over time, my family has become more understanding (my mom got IC a year & a half after I did) & my best friends adapted to it. I don't miss the people who left me, I really believe that they liked my image & activities & didn't really know or relate to me. As much as possible, remember that you are still you & don't turn your anger against yourself. This is not your fault, you did not ask for this.

Never give up. Just because one doctor doesn't have anything else to offer doesn't mean there isn't something else to try. I went to 4 urologists & tried many many meds until we created my complete treatment program.

Please stay hopeful. Most IC patients do get better, it takes time & perseverence. And life will be good again.

Wishing you better days soon,

[bluetou]

Kadi, thanks for your post...although I did not start this post...I thoroughly enjoyed the benefits of it. Thanks so much for taking the time and posting such a throrough and from the heart email.

Peace

:pray:

[ICNDonna]

Please take a few minutes and read my story (the link is in my signature). I had a difficult time at first, but once I stopped allowing my bladder to rule my life, my outlook improved --- when I was diagnosed with diabetes last year, I was able to adapt my life much easier than I could have were it not for my IC.

Warm hugs,
Donna

[Natsy]

It is interesting that Donna has mentioned diabetes because I was just thinking about this and how this illness restricts your diet too.

I know it is going to be really hard to stop eating and drinking the foods you love. But, from what I understand, if you stick at it then you might eventually be able to reintroduce some things (maybe not the diet coke!) like pizza.

I have been feeling really sorry for myself about the diet and have been trying to put it into perspective by thinking 'at least I don't have diabetes' - because people with that condition have to stay on a diet for life and risk early death if they don't adhere to it. The IC diet can be a drag but I from what I understand many people get things under control and then their diet no longer has to be so restrictive.

I'm sure things will get better (even thought it does't seem like it now) for you and until then I hope that you can find some solutions to make things more bearable.

I know what you mean about the bathroom - I have maps in my head of all the bathrooms at shopping malls, on the route to work etc!

Take care

[mcrabb73]

Thank you so much for your help and support! I really do appreciate it! I am so glad these boards are available for help. You're right...friends and family really don't "get it". Unless a person has had to deal with this they don't understand how devastating it can be.

Thank you for all of suggestions! :) They are so helpful! I know with the holidays coming up...it is going to be hard not to get discouraged. I keep thinking last year at this time I could eat this... I wonder if the holidays will ever be the same.

I know it is important to stay positive. I am trying. I am glad there is the potential of being able to have more "normal" in my life in the future.

I am still early on in the process of trying to figure this all out.
Thanks again,
Michelle

[KarenAnne]

Being a new IC patient, I feel the same way. I am trapped at home & the only place I go is to dr.'s offices. I also can usually get to church. I read on one of these threads about some kind of "bladder pass"? What is it & where can I get one? Thank you.

[kerr4274]

It's been awhile since I have been to the site and I was feeling real down today..I'm having a flare and I know why...lunch! My office went out today and I wasn't reading the ingredients well enough to realize what all was on the grilled chicken. I should have asked but I didn;t want to hold the ladies up on their lunch. Anyway, reading this post made me realize that it isn't as bad as it seems. I'm nervous about the holidays and what I can eat..my poor brother in law was trying to plan Thanksgiving dinner around my diet and I told him not to bother...I will be careful to eat what is safe. It is so frustrating knowing that this disease does affect everyone not just me. I know there is a light at the end of this long dark tunnel and in time I will be able to live my life again without the worry of where the bathrooms are and will I be able to eat.