Living with Interstitial Cystitis

Some nights I cant go to sleep I cant stop running to the bathroom to release my bladder and during the day I fear my insides down there are going to flare up and feel like I’m on fire. Year by year it gets worse. There have been to many times that I’ve cancelled my plans, left school, or couldn’t move from the floor because I was in to much pain. Being on the floor is the worst part, every time I move the pain kills and those are the days I just cant take it.

I just want to die, but I cant because you cant die from IC you just only wish you could so at least all the pain is gone. I would pray and pray to god just to strike me down or ask what did I do to deserve this? Each day sometimes I can handle a little bit of pain as long as I take deep breaths, drink plenty of water, and just remind myself that the pain doesn’t last forever. I’ve gotten so use to it that sometimes I feel as though that’s the way everyone’s body feels.

Sometimes I look at people and envy them, I mean god do they have to be up 50 times a damn night and does their insides down there feel like they are on fire and damn I try my best not to get sick but I always get sick and getting a virus makes my symptoms ten times worse.

Some days I can be in so much but just by looking at me you can’t tell however I always get really quiet and want to be left alone. They say your suppose to make your friends and family understand but how do you make someone understand the pain when they cant feel it and god even your own doctor doesn’t understand sometimes. Its so hard to describe the pain too. My body is so tired and for 2 months straight I couldn’t go to sleep till 7 in the morning, to much frequent trips to the bathroom.

Some days I just cry, I cant take it and I’m tired of my life revolving around it. I try so hard to do my regular day to day activites but sometimes I can’t this damn IC gets in the way. The damn elmiron doesn’t work as good sometimes I still get up frequently and I’m still in pain, and now that I’m off insurance I’m even more screwed.

And damn just I feel like no one ‘normal’ understands