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I'm so sick of being sick all the frickn time!!!!It's always something, ya know? If your not spending your whole day with a burning bum and in and out of the potty. Then its nausea all day with back pain and a splitting headache!! I just want to feel like some shred of myself still exists! But No! I get to wake up at 3am to go to a job where I have no control of the level of stupidity I have to deal with! I have to pull up my big girl panties and be a constructive leader. All the while I want to puke on the floor but I'm basically required to keep a smile on my face and inspire people to want to grow there careers. I know my job is my choice and all, well kind of. I have the best job I could have withoit a high school diploma. Which is also because of this frickn disease! I used to be a light, not afraid of anything and ready for whatever! But after 16 years of being sick every single day, I'm tired!! All I want are the things this stupid frickn disease took from me!! My ability to relax, not worry every second of everyday, to let people into my bubble, my sense of adventure, my need for something bigger, the drive to achive goals, my ability to have a for real family of my own!!! I deserve those things!! People will say to me well at least you had 15 good years before you got sick. No I frickn didnt!! At 3 my right leg was pretty much ripped off and I had to have total reconstructive surgery and aftet being in a body cast for over 6 months, I had years of recovery that I taught myself because I was never given any form of physical therapy. And for some reason my mother though it was more important to have another baby then take care of the one that got broken because she wasnt paying attention in the first place! Then after 9 years of teaching me absolutely nothing and hardly even being aware I exsist. She decides to send me to live with my dad. A man I didn't know at all!! And the mental abuse just continued!! Degrading punishments. Anything to widdle down any form of self worth. Which I could be strong for. But then this damn disease hits at 15!! Probably one of the most awkward times in persons life anyways!! Not even with giving yourself enemas on the floor of the school nurses bathroom 3 times a day, or always having to be the person that drives so you can crazily pull over and take off running into the woods before you crap your pants in the car, or when you do crap your pants in the car and someones with you, or going to peoples houses where the bathroom is in the kitchen!!! I could go on and on!!! I just dont want to be sick anymore! I've had 6 gastro docs. And even the best in my state says I really got the poop end of the stick!! The day I was diagnosed the doctor looked at me strait in the eyes and said your life is never going to be the same and this disease is going to devour your life!! He wasnt fricking kidding!!! I remember my step mom taking him into the hall to scold him. But if anything I appreciated his honesty.
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I am so sorry,
Life sucks and it is just not fair...I have spent the best part of my life fighting this disease, having bits and pieces cut off or stolen at various ages and living in a permanent state of vigilance, shock, embarassement, terror and pain.
No, I was never able to have a family of my own so I married into one (some days I truely wonder, 'what was I thinking????') and got step-kids and grandkids plus a boat-load of in-laws....I couldn't finish school (could barely survived a whole semester at a time)and never wrote my finals but I still made a career for myself...maybe not as high, strong or well paid as it could have been but it is a career none the less...
Pain? Yes. Every single day and night. Do I sleep through the night? Yes, and no...if I go to bed a 2am, yes. If I go to bed a 10p, no. I can get 5-6 strait hours but that is my best.
This disease sucks, it destroys just about every single aspect of self esteem and turns you into someone you never wanted to be. But it is what we have got and we have to find a silver linning somewhere...
I cook, bake, write and create...I learned 'indoor' activities young...Because outdoors was scary...my best friends are still around, my 'fake friends' abandonned me long ago and good riddence...
No, my path is not smooth or easy but it is the only one that I have got and I do my best to make it work...I hope that you find a path that brings you joy...you deserve joy.
I have found that if I surround myself with people who make me laugh that life is easier. My hubby (who can make me scream and not in a good way) makes me laugh so hard that I cry...he has me folded in 2 giggling until I can't breath...that makes up for a lot. My friends, good and bad, are still around...and after nearly 3 years without work (lost my apt, my company and ended up majorly in debt)I am finally earning a living again....
Life is not easy but it is better than it was and that is saying a lot...
Plan for the worse, hope for the best and keep laughing.
Sharon
Sharon,
I've got to say I always think of you when I'm really just feeling done with it all. Like I just dont have it in me. I think of your story, I really do. It gives me reassurance that it is manageable and happiness is a option. I just have to be patient and listen to my body. Your a inspiration to everyone dealing with these horrible diseases that attempt to consume us whole. So thank you. Smiler
TE Marie,
My Mother has gotten alot better. But she knows we will never have a normal mother daughter relationship. I'm going to say what I want to say to her whenever I want to say it. Which often gets odd looks from people unaware of our relationship. But it works for us. She knows it's this way or no way. And she prefers this way. So we work with it. Now she lives hundreds of miles away and we only see eachother every few months, so we appreciate the time. Both of my parents came to the realization they didnt do what they were supposed to do as parents and thats all I can ask for. Just honesty, cause you cant change the past you can just be real about it.
Sonja6
I'm glad your parents have acknowledged the past and you can go forward. I feel for you working a full-time job and I can't anymore. I have many other health problems and am classified disabled by social security disability. I don't like acknowledging it just like I can't get myself to accept that I'm probably not going to get any better with any of my health problems.

I don't want to think that this is all there is and it's not going to get any better.

You are right Sharon is our own little pink energizer bunny Big Grin

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