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:
- 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.
- 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.
- 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.
- 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.
- 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!
Author, Speaker, Patient Advocate
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
For health care workers: Interstitial Cystitis: A Guide for Nutrition Educators
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