Living with Interstitial Cystitis

One of the more difficult things about living with a chronic illness like interstitial cystitis is attempting to explain to others what it is and what it really feels like. It also sucks to explain away some of the daily odd behaviors that become necessary for your own sanity and comfort.

The illness really is far-reaching and it is essential for newbies to be able to plan for some of what may change for them after diagnosis. Luckily, some sick humor can also be found in these changes. Below, some of the funny and not-so-funny thoughts that come up for me on the daily:

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  • Wondering what my co-workers think when I go to the bathroom 500 times a day (exaggeration but still, I wonder).
  • Hoping and praying that going to the bathroom will not bring on the wave of nauseating pain. Never in my life have I thought so much about peeing.
  • Testing just how long I can go without peeing before it leads to an embarrassing situation.
  • Avoiding intimacy with my handsome, wonderful, patient-as-a-saint boyfriend in fear of living in pain for the next five days.
  • Never leaving the house without a collection of pills.
  • Making sure there is a bathroom wherever I am going.
  • The ensuing panic attack when I realize I forgot my mini pharmacy.
  • Hoarding all my pennies “just in case” I need to pay for some new treatment, doctor appointment, medication, etc. etc.
  • Not being able to eat 85% of the options at a restaurant or social event.
  • Bringing strange combinations of food to said social gatherings and happily exclaiming “Oh I just enjoy eating this way!”
  • Fantasizing about laying on the couch the same way I used to fantasize about vacations and going to the bar (although this could be semi-related to my age creeping into the 30’s)
  • Offering anyone $20 to put the heating pad in the microwave and get it for me when it’s done (and actually paying them if necessary).
  • Hoping one more  cup of coffee won’t really make a difference and push me over the edge of pain. It’s worth it at 3pm sometimes!
  • This train of thought: Is that my bladder? Could I be pregnant? Maybe it’s a tumor?? GOD what is that pain?!?
  • Generally just wondering why my body has turned on me and why in losing my first child I also had to lose my sanity (read my story).

 

Although I continue to feel 90% better than I once did, these thoughts don’t automatically disappear when the pain diminishes. Wouldn’t that be marvelous?!

Instead, dealing with the thoughts and emotions that follow the physical stuff may be just as much as a struggle – hence why I try to find some humor in it all!

What did I miss? What interesting things come up for you while living with chronic pain?

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6 thoughts on “Living with Interstitial Cystitis

  1. brokenbladder says:

    I often find myself wondering what illness / ailment I would take over IC. Such as, I would rather break my leg and be in a cast for 6 months or I would prefer to be diabetic or asthmatic. In fact, there’s lot of horrible illnesses I would take over IC This condition can really send my mind crazy!

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    • bonniebweb says:

      So true! When I get into that mindset I TRY to remember that although it’s pretty horrible, it could be worse. I would always prefer to have a condition that will likely eventually heal (like a broken leg) but I have gotten to the point where I think this may heal too. Stay strong!

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  2. Rachel says:

    I think it’s so great you are sharing your story Bonnie! Although I don’t have IC, I know what it is like to live with a chronic illness and fear that it will flare up at any moment. It’s so good to share what you’ve learned on your journey. Hoping it continues to improve and you have more and more good days than bad. ❤️

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  3. stephieestie says:

    I would say sometimes clothing. I’m way better than I was before, but some days I still need to choose more comfortable and loose clothing. Also, I get very sharp pains (not too often but often enough for me to notice) when walking that just starts from my belly button and shoots straight down. I literally can’t move for a few minutes because it hurts so I have to kind of stand there and pray it goes away fast. :/

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