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I am writing this at 5am.

I have been trying to sleep for the past 5 hours.

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I can't. I cant because of this hellish bladder disease. Every time I lay down the extreme pain and burning starts up. I go to the bathroom, strain, hyperventilate, squeeze a few burning shards from my vagina and walk in a daze back to my room where I curl up and try again to sleep. Only about 5 minutes later the same pain begins again. "Just ignore it and sleep, just ignore it and sleep" but that doesn't work. Now the pain is intensifying, the urge to urinate so strong that it feels like I haven't peed in 8 hours even though it's been 5 minutes. Again, to the bathroom. Burning. Drops. Back to bed.

This went on for 5 hours tonight before finally I went back to bed and starting sobbing. My roommate had jokingly said "go to bed!" when he saw me up again and I don't know why but that added to everything and I was sobbing in bed thinking "I am trying!" I just lost it because I am so, so tired and all I want is to sleep right now. My roommate could hear me sobbing from his room and came to comfort me.

I decided to get up right now, since I can't sleep, and write this all down. To give people a really hard look at what this disease does. Not only during every minute of every day but also at night so that I never actually get a full night of rest which adds to my abundance of mental health issues some of which have stemmed from having this debilitating disease for almost 2 years now.

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Nobody realizes that even though I have a consultation with a urologist in a few weeks that it's still so far from over. It may never be over. Some people never get relief and the longer you go untreated the worse chances you have of getting better due to scar tissue. I have what would be considered a very extreme case of interstitial cystitis. Though, I still have to get the cystoscopy and find the right urologist to even get that official diagnosis. It will probably be many months or years before I am on the right path and have relief. I say this because it's been the experience of everyone with IC that I know and many people in the support groups.

Many doctors don't know much about IC and there aren't really great treatments. The only drug for it is only effective on 30% of people. All of this can seem really bleak and overwhelming sometimes, especially when every minute of every day is suffering and I haven't had a full night sleep in so long.

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I am 29 and have felt like this since I was 27. This is no life for a young woman.

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I haven't had sex in over a year aside from a few failed attempts where the pain proved too bad. I can't leave my home hardly. I can't date anymore. I can't be active like I used to be. I have to just sit in this room thinking about this god damn pain wishing I could sleep for just a few hours so I could get a moment of rest. I am a shell of the person I used to be. Vibrant. Strong. Active. In nature. Doing yoga. I can't do these things. So many things were stripped from me. The things that helped me heal and kept me sane. Many of the foods that I ate I can no longer eat. No tomatoes. No fruits. No coffee. I try and fail because without medication and medical guidance I never get relief at home.

To make things worse because my illness is invisible and not well-known I deal with most people assuming I am exaggerating. I have had people tell me that the only thing standing in my way of living an active life is myself. I want to ask would you tell a person in a wheelchair to just try harder to walk? Just because cannot see and do not understand my disease doesn't mean it isn't real.

It IS this bad and the fact that you overcame some other unrelated illness has nothing to do with my disease. Not even other people with IC may get what I am experiencing because there is very mild and very extreme cases. I used to have a mild case until the stress of losing my best friend flared me up. The flare never went away. A few years ago I would have had NO IDEA what this type of suffering can do to a person. And not understanding is fine so long as people don't act like they do or pretend the disease doesn't exist because they haven't heard of it.

I know that was a semi-unrelated rant but the isolation, misconception, and callousness I receive on top of battling the pain really does add to the overall level of torment.

Well, thanks for listening Steemit and sorry my first blog of the day is so dark. I just had to get it out and this was more productive than crying and there's always the chance some desperate person like I was years ago will stumble on this blog and have a small piece of the puzzle they need to get on the right path for healing.

So, for tonight all I can do is stop trying to sleep and wait until eventually my body gets so exhausted it can't possibly stay awake any longer. Unfortunately, this is exactly how the majority of my nights play out.

I am still fighting. It is a long war but I won't stand down.

I have my urology consultation on the 12th but may have to switch urologists. I know of a female one that has been dealing with a friend I know who also has IC and she has tremendously improved her life. I will keep updating you guys along the way of this long, tedious, rocky journey.

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