I just found out that it’s Interstitial Cystitis (IC) awareness month yesterday. We are rapidly approaching the end of the month, but I wanted to write about it. If you remember my posts from early May, I was having a cystoscopy and there was a complication where my bladder ruptured. I was in pain, pissed off and completely miserable.
I think in one of my posts I said that they ruled out IC. Since that time, I was officially diagnosed with IC. There is no cure for this disease, but there are some medications and treatments to help alleviate the symptoms. To read a better overview of the symptoms or more information about this disease please click here.
This condition is debilitating at times. I’ve missed more work this year than I ever had before. Basically the majority of the time I feel like I have a raging UTI (urinary tract infection). If you’ve ever had one, you know how awful they are. I feel like I have an infection whenever I get stressed (I work at a jail and have a toddler, so I’m stressed a lot), have sex, travel, eat the wrong thing, breath the wrong way apparently. It makes my life kind of sucky sometimes.
(Photo Credit: The Berry)
I think it’s a hard condition to deal with since from an outside perspective I look normal and healthy. On an average day I pee 30-50 times. On my worst days, it’s more like 80-100. My best days it’s normally around 20. I like the days when it’s around 20. I pee my pants on the regular. My pee is everywhere. I don’t have control. It’s happened more than once that I’ve peed my pants at work. Makes me feel really special and sexy. I mean, how could it not?
My sleep is terrible. I have to drug myself to sleep at night. I can’t have the good stuff because if my child wakes up I need to be there. I take Benadryl every night. I just want to pass out and sleep the whole night through without having to get up to pee. I can’t remember the last time I sleep a whole night. For the first 4 hours before I finally fall asleep, I average getting up at least 7-10 times. It’s annoying. I also get resentful because my husband is fast asleep without a care in the world. Rude.
I hardly ever feel like I have relief when I do pee. When I feel like there is an infection I want to hold my crotch and lay in bed all day. Can’t really do that in public, or with a small child. I feel that I have the right to complain about it. Sometimes, you just accept that this is part of my life. Other times I get very upset and feel like it’s beyond unfair. I think my bladder has it’s own personality and is plotting to kill me. We are not friends. If I could live without my bladder and didn’t have a pee bag I would do it. Some days I think having a pee bag would be better than feeling this way all the time.
I also have Endometriosis. Yep, I hit the jackpot with my lady bits. I know many people have worse things going on in their lives. This is my reality and it sucks. I hate it. I wouldn’t wish this on my worst enemy. Maybe on my worst enemy, but that’s just mean. Chronic pain sucks. It’s a lonely journey because like I said, from the outside I look normal and healthy. Since this disease is mainly diagnosed in women, I think it’s extremely difficult for men to understand. My husband has been a champ and supports me.
At times people tell me to smile and be happy that “things aren’t worse.” That is completely invalidating. And ignorant. And just stupid. To you, I say “eff off.” All I can say right now is that science better hurry up and make me a bionic bladder so I can live my life in peace. Please. Pretty pretty pretty please.
(PC: the berry)