Being Active Despite Interstitial Cystitis (A Nexerciser’s Story)

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I was on Facebook on Sunday and saw Nexercise was looking for people with different diseases and other problems, such as surgeries, to blog about what they do to keep on moving safely. It grabbed my attention quite quickly! I commented right away and here I am :). This is my first blog EVER! Going to give a quick “about me” so you know where I’m coming from.

I’m in my 40’s, married mom of one. I have Interstitial Cystitis. It’s a rare and painful bladder disease with no known cure. Doctors also have no idea how people end up with it. It isn’t contagious. Best way to put it, it just “happens”.

I started having symptoms in 1987 and it took until 2004 to get a diagnosis. Back when it started, doctors had no idea of what this was. Was given antibiotics, even though there was no infection, and after years was told it was in my head. If it was in my head, I wouldn’t be seeing the doctor for my bladder ;). Finally, in 2004, my doc suggested a urologist for me, and went through tests and was diagnosed. I didn’t let it get me down. I started to do a lot of research and did as much learning as I could about what was going on.

I was considered moderate-to-severe when diagnosed. Right now (knock on wood) I’m mild-to-moderate. I am fine without meds unless there’s a flare, which can last many months. Won’t get into the meds, it’s the typical stuff the urologists try for ya.

I also learned what foods bother me and what exercises cause me pain and learned to adapt and do what works. Each of us with this have different triggers so I’ll be talking about what I found for me. When I’m having really bad days, I’ll be letting you know and telling you what I’ve done. I don’t plan on throwing my hands up in the air and giving up. I’m hoping to be able to give you a little nudge to find something, anything, you can do to keep that motivation and dedication to your health! πŸ™‚ Β (Also, yes, I use smileys a lot)

Even with something like this, we have to find a positive out there!

First thing I’ve learned with this is I can’t run or jog. Thats fine! I’ve found alternatives for me. I can ride a recumbent bike, take a nice walk, sometimes it’s 5 minutes, sometimes it’s an hour, just depends on the pain at that time. I can use an elliptical machine since it’s low/no impact (even bought one so I can use it when I’m ready and can’t complain about having to leave the house lol). I can use the wii Fit and wii Fit plus for some exercises. I use walking videos when the weather is lousy. Depending on how I feel, I can move more or less with them. I do what I feel I can. When I’m feeling good, yes, I push myself, but not to the point of having the bladder pain start up. Learned through trial and error. πŸ˜‰ I can lift light weights for my arms, I can do squats.

Food is a problem with most people with IC (abbreviation for Interstitial Cystitis). There are many foods that can cause pain in most (such as acidic foods like vinegar and citrus.) But again, like exercise, what bothers one may not bother another. Another thing we learn through trial and error. I’m lucky, when I feel good, I can add a few foods that would normally bother me (like strawberries). When I’m feeling good, that’s when I add some of those foods in to get more nutrients into my diet. Try to eat as healthy as you can to get your fiber, vitamins (very hard to do with vitamin C for many of us) and other essentials in daily.

So, here’s to doing what we can with what we have! Hopefully something I say will stick out and help you to find alternatives or other things to do when you just don’t feel your best.


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