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.
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!
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
For health care workers: Interstitial Cystitis: A Guide for Nutrition Educators
I have not been diagnosed yet, but I have been told that "perhaps" that is the cause of the discomfort that flares up regularly. I have also had five UTIs in the past year and a bout with kidney stones. I've had a cystoscopy, a urodynamic flow analysis, and renal and bladder ultrasounds. I've been to a urogynecologist and a physical therapist for pelvic floor therapy, as well as my GP but I have gotten little or no support or guidance. So frustrating. I'd love to find out more about the IC diet.
ReplyDeletePlease email me at NutraConsults@aol.com. I can guide you to some resources including www.ic-diet.com and my books that you see in the right hand column. :-)
ReplyDelete