Thursday, June 28, 2012

Interstitial Cystitis Mental Gymnastics - Part Two (Turning Negative to Positive)

Coping strategies for IC lifestyle
I have a question for you. If you have a chronic illness like interstitial cystitis/painful bladder syndrome, do you think of yourself as "sick"?

I have to admit, now that I have my symptoms under control, I don't think of myself as least not on a daily basis. Watching what I eat, taking my medications, and tapping into coping skills helps me maintain a semi-healthy mindset. I can do my work, fix dinner, encourage my family and friends, and basically enjoy life.

That being said, there are times when I can't rationalize my health problems away, particularly when I have to fill out my health history for a new doctor. It is one thing to list the surgeries (three C-sections among them), but quite another to write "interstitial cystitis, hiatal hernia, Hashimoto's thyroiditis, ascending aortic aneurysm, sacroiliitis, etc..." and then list the medications that go along with all of those conditions. Of course, it really hits me between the eyes when I am faced with something I want to do but can't.

Now, common sense tells us that living with a "healthy" mindset has to be healthier than living with a "sick" mindset. But how can we switch our thinking when we are constantly frustrated by fickle diseases and multiple conditions? Here are some ideas: 
  1. First, embrace the philosophy of the Serenity Prayer: You know the one.....

    God, grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference.

    This is huge, folks. If you have conditions that you cannot change, then you need to learn coping skills to handle them. If you have conditions that are within your control, then you need to take control.
  2. Second, take ownership of your body. If there are things you can do to manage symptoms (like avoiding IC trigger foods) then do it. Don't blame others for what you can control. Don't complain about the things you need to do to be "well." Just do them. You only have one life regardless of the body you have. Treat it well...there are no trade-ins.
  3. Third, learn to be a cheerful "swapper." If you can't ride a bike, learn to appreciate walks and hikes. If you can't drink alcohol, embrace the role of designated driver. If you can't eat some of your favorite foods, experiment with substitute ingredients or identify yourself with new favorites. You get the idea.
  4. Fourth, minimize the time you spend on "sick" activities. I package up my medications and supplements in little plastic zip bags once every couple months. Yes, it is depressing, back breaking, and takes a couple of hours. But, once it is done, it is done. I don't have to think about it for weeks. I also have streamlined my doctor appointments. I found I was running to one doctor or another week after week. I started to resent the time I spent waiting in offices. When it dawned on me that I only had so many life minutes, I asked my gynecologist if he would follow me for all of my conditions as long as I was stable. Thank God he agreed. 
  5. Finally, find a way to reach out and help others. This has probably been one of the most rewarding things about having interstitial cystitis. Eventually, I earned the wisdom to share with others who were trying to figure out this crazy disease. I started by answering questions at the Interstitial Cystitis Network's forum and writing a column for the Interstitial Cystitis Association. I eventually wrote three books about IC and Diet, and started counseling patients. Lately, I have been speaking to support groups and educating dietitians and nurses about the IC Diet. It helps ME to help others!
The underlying point here is to focus on what you can do and minimize the time you spend dwelling on what you can't. Or in other words, stop defining yourself by what you can't do and start redefining yourself as a person who is in control of their life. It definitely takes some mental gymnastics and discipline, but the pay-off can be more days washed in positivity than buried in pessimism. And that is healthy for anyone!

Author, Speaker, Patient Advocate

Helping Yourself Is the First Step to Getting Well

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

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  1. wow Julie I feel like this is spot on! If I had read these words of wisdom 10 years ago, what a different life it would have been. I have started to get involved in helping to organize the vancouver IC group and it has been so rewarding, and has helped me to heal even more. Keep up the awesome work.

  2. Thanks, Helena! Congratulations on starting your new support group! If I am ever in the area, I would love to speak to your people! XOXOX

  3. Love it Julie!! Really love it. You just captured it perfectly! Absolutely perfectly! I think that the gift of meeting other IC patients is that it gives you perspective... and helps you see that maybe your IC and/or your struggles (not you personally) really aren't as bad as you thought they were. So, I remember thinking that I must be the only IC patient in California and was absolutely stunned to find hundreds of patients near where I lived. Better, they gave me a reality check. AFter meeting them, I could no longer say that I was the WORST in the area... and, in fact, I was actually pretty darn good... and that really helped me turn my thoughts around to the positive. So, a little bit of perspective goes a very long way!

    1. Jill, you are a big reason I do what I do. You have been a wonderful mentor and role model. I appreciate everything you do to support my work! XOXOX

  4. Completely agree Julie!!! Sadly, compared to all the damage my body acquired in my car wreck, IC has really taken a back burner for me in the last 4 years. That first year I thought it was the most terrible thing ever and didn't know how in the world I was going to survive such a painful disease for the rest of my life. It's amazing how destroying half your body can really change your attitude! LOL!

    Since then I've learned that the only way to survive is to focus on all the positives in my life, all the things I can do instead of allowing the negative (living every minute of my life in pain and all the things I can no longer do) to control my life. To be honest I am happier now than I have ever been in my entire life, despite the permanent pain & handicaps!! I especially enjoy getting to use my story & experience to help others in similar circumstances. Nothing makes the suffering of the last few years worth it like helping others (corny but true, LOL)! Thanks for what you do to help others come to terms with their IC & other problems!

    1. Lyndsey, if you ever want to write a longer version of your story, let me know. I would be glad to have you as a guest blogger! Blessings to YOU!

    2. Wow...I'd love to!! Thank you! Just hit me up anytime, either on Facebook or email (! :-D

    3. Lyndsey, check your email!

  5. Great post, Julie! I don't think of myself as "sick," but I've been blessed with the ability to (for the most part) keep my IC symptoms under control.

    Plus, the diagnosis of IC helped me to refocus on what's important in life so, in many/most ways, my life is better than before.

  6. Kelly, I can't wait to meet you in person and give you a GIANT hug! You are always so encouraging! Namaste, my dear friend!

  7. Julie,
    A comment on health history. Mine is extensive with many surgeries, allergies and medications currently being taken as well as many tried. I wrote it all up on my computer and whenever I have a change I just add the information. I carry a copy next to my license in my wallet and can just hand it to new doctors so they can copy it. This takes all the detailed preparation, emotion and frustration out of the situation and keeps everything handy as I co-ordinate with my many Drs. (I haven't found one willing to handle everything) When filling out forms for new Drs. I just write "see attached". Every Dr. I have met with using this format has been very pleased and comment that they wish all their patients did this. If you would like to see a copy of the format I use let me know. It has evolved over the years to be as straightforward and complete as possible. Love your ideas on coping. Shared them with an IC friend as soon as I got the newsletter and after discussing we both felt better and more positive!

  8. I don't have IC, but I have been recently diagnosed with Vulvodynia. Apparently many women with VV have found some relief from the IC diet, so I began that today, checked out the IC site & found the link to your blog! I really appreciated this post & will be bookmarking it. I don't usually think of myself as "sick" unless I'm in the middle of a terrible flare up ~ and then it's not so much "I feel sick" as "Ouch! I'm HURTING!" It's very important to me that I stay positive & optimistic, because I KNOW I will get through this to the other side. I have sad days (usually after a new food makes me feel junky after feeling "better" for awhile) like everyone else who deals with crap like this, but I try not to dwell on it. I liked the point you made about "learning to be a cheerful swapper". I think I'm going to write that down & display it in my kitchen :)
    Blessings to you & yours!

  9. Hi Rise-n-Shine Life! Thank you for your comments! Let me know if you have any questions about the IC Diet!!