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 sick....at 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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Wednesday, June 20, 2012

Interstitial Cystitis Mental Gymnastics - Part One (Consider Intention)


I used to read Ann Lander's advice column all the time when I was growing up. I think her common sense wisdom shaped a lot of my thinking. One time, a young widow wrote to Ann complaining that people at her husband's funeral said "terrible" things like, "At least his suffering is over," and "Time heals," and even “You are still young, you can marry again." Ann's gentle advice? Forget their words and appreciate their actions. Those people were simply doing the best they could in an unimaginable situation. The thing to remember was that they were there…they took time out of their day, maybe even a day off of work to show their respect, love, and support. 

I often hear people with chronic illness like interstitial cystitis complaining much the same as that widow who wrote to Ann Landers. Here is my point. People’s words may not always be perfect, but who among us can come up with the exact words appropriate for every situation? This story helps me remember that 99.9% of the people we meet are not malicious, mean, deceitful, or out to “get” us. People who go to funerals, who ask about us when we are sick, or who say something "terrible" rarely do so with bad intentions. On the contrary, most of the time they are doing their best to show they care. For us to assume that everyone can read our minds and know exactly what we need to hear at the exact moment we need to hear it is arrogant and maybe even narcissistic.

If only for today, let's cut the people in our life a little slack. Life is short. Situations are complicated. There are no right or wrong words. Accept love with a spirit of humility, and don’t read too much into people’s inadequacy to express themselves. Modify your expectations and appreciate other peoples’ intentions and good hearts. 

Oh.......and pray that when you say something that accidentally hurts another person, because you will, that the other party receives your words with an equally gentle and understanding heart.

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



 **Please SHARE using the links below!**