What Is Your Interstitial Cystitis "New Normal?"

Have you heard the phrase "new normal" which describes how a person experiences life after diagnosis and treatment for an illness or chronic condition? It started to be used decades ago among cancer survivors, and many times people with conditions like interstitial cystitis/bladder pain syndrome use it as well.

Simply put, "new normal" implies that you may never go back to the body or even mental state that you were in before you were diagnosed with interstitial cystitis, but you have reached a point in treatment where you feel better and have even developed coping skills that make navigating your painful bladder easier and maybe even automatic. 

For example, I am MUCH better than when I was first diagnosed with IC! I now look at the couple of years before and after my diagnosis as one long bladder flare where I had to learn to listen to my own body and not ignore what was happening. 

Obviously the IC diet is important, but I don't have to watch what I eat as much as I used to.  I still have several things I definitely cannot touch: Soy, cranberry juice (but I can have a few dried cranberries on a salad), strawberries, very spicy foods (although I can have a pinch of spice in something like guacamole), alcohol, any tea other than chamomile and mint (I never did drink coffee), and "too many" tomatoes or citrus. I am at a point where I can have one "bad" thing a day and do well. I am always on the hunt for new recipes, and meal planning isn't as frightening as it was 20 years ago.

If I start to feel some bladder twinges or increase in frequency above my "new normal," I go back to a strict IC diet, which for me involves a lot of water, eggs, toast, cottage cheese, and vegetables. I have learned that I need to get plenty of sleep. I watch my stress level  and have coping strategies for that also. I take Epsom salts baths when I need them (or just when I want them!), and I don't apologize for the medications I need to take occasionally because they improve my quality of life, something I lost for a few years! (There is a chapter on how to handle flares in Customizing the Interstitial Cystitis Diet: A Confident Choices® Book)

I still void more often than someone without IC/BPS (mostly in the morning), and about once a week my body reminds me what the feeling of urgency really is, but since my pain is controlled, I can live with those things and even manage them with a few tricks I have learned over the years. The most important thing is that I don't fixate on them and remember everyone gets something sometime. That is my "new normal." 

How about you? What is your "new normal" with interstitial cystitis? Respond to this email with ideas and let's help the newly diagnosed among us learn some ways to enjoy their lives again!

Julie Beyer, MA, RDN
IC Dietitian

Author, Speaker, Patient Advocate

www.ic-diet.com

See Also:

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

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators

Interstitial Cystitis/Painful Bladder. Is It All In Your "Head?" Maybe...

My family is no stranger to chronic pain. In addition to my interstitial cystitis, my daughter suffers from endometriosis, a condition that causes her incredible pain and upsets her system enough to make her periods madly unpredictable. She is doing much better today, but after one of her surgeries she said something that really bothered me. She said she was glad to have proof that it wasn't all in her head. It killed me to hear that; but unfortunately almost every person with pelvic pain has heard that line at least once in their quest to get a proper diagnosis. 

The truth is that diseases like endometriosis and interstitial cystitis CAN be affected by the mind-body connection, also called "psychoneuroimmunology" or PNI. If this rattles you a bit or causes you to become defensive, think about this: We know that mental health conditions like depression and anxiety are often chemical in nature and can manifest themselves in headaches, backaches, and yes, even bladder-aches. We also know that chronic stress triggers the release of several hormones and other substances which actually help us react swiftly in actual emergencies, but when released chronically, can affect our health negatively. As you know, we can't eliminate stress entirely, and we often can't control whether we are depressed or anxious, especially if we have an unpredictable condition like interstitial cystitis. But we can minimize the effects of stress on the body with a few tricks and lifestyle changes. Here are some ideas to get you started:

1. Take three deep breaths. Fill your lungs completely with air then release it slowly. This relaxes the diaphragm and, in turn, much of the rest of the body. 
2. Don't procrastinate on tasks you need to do. Procrastinating can cause an unnecessary increase in stress when actually doing the task can reduce it. Create a to-do list and start crossing things off. Time yourself doing chores you have put off for a long time. You will become more motivated to get more tasks done once you realize it only took you 20 minutes to sort and clean the front closet or clean out the car.
3. Divide large works into smaller bites. Maybe you don't have the time or energy to go through all of the kitchen cupboard. I get that. But what about starting in one corner of your kitchen and doing one cupboard a day. Even if you are exhausted, you can clean out one cupboard each evening. Before you know it, your kitchen will be very well organized! 
4. Engage in a hobby or learn something new. Giving your mind a pleasant diversion can be a great way to reduce the unwanted effects of chronic stress. The sense of accomplishment you feel after completing a project can provide fuel for you to start work on the next thing on your list.
5. Exercise and move more. Take a walk, stretch, lift light weights. These activities help burn the calories released and they can neutralize the chemicals coursing through your body when you are under stress. 
6. Pray or meditate. Connect with your spiritual purpose. Even yoga can help create a state of relaxation several times a day.
7. Get more sleep. I know this is hard to do when you are in chronic pain, but your body needs sleep to heal. (See: Are You Sick and Tired of Being Sick and Tired?)
8. Talk it out or write it down. Putting words to your situation is one of the best ways to help sort out any stress or other mental anguish you may be experiencing. Talk to a trusted friend or family member, keep a journal of your experiences, reactions, and/or feelings, or make an appointment with a therapist or spiritual advisor. Just putting words to a situation is a great way to reduce the effects of stress on your body. 

In summary, the thing to remember is that even though your disease isn't really "all in your head," there is definitely a connection between a person's emotions/stress level and their IC symptoms. That doesn't mean a person with IC is imagining their symptoms. Rather, when a person experiences heavy emotions or stress, a cascade of chemicals is released that causes dozens of physical reactions in the body and we need to create healthy habits to reduce the effects on our health.

For more information about PNI and how emotions, hormones, and body chemistry are interrelated with disease states, check out these books:

Molecules of Emotion (Candace Pert's first book about PNI. A bit medical, but extremely interesting and really helps explain the body/mind connection.) 

Everything You Need to Know to Feel Go(o)d (Pert's recent book...much like Molecules of Emotion but easier to read. It also talks about her's and her husband's discovery of Peptide T, the closest thing we have for a cure for HIV/AIDS! Very very good!!) 

When The Body Says No—Understanding the Stress Disease Connection (Just like it sounds--helps make the connection between stress and disease.) 

You can also read more about PNI at the American Psychological Association website: Psychoneuroimmunology

JulieBeyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

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 theInterstitial Cystitis Diet.

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

For health care workers:  InterstitialCystitis: A Guide for Nutrition Educators