Anyone ever feel alone?

Me don't have much money and we really need for me to go to work as much as possible. But we have always made it work. I used to miss work for stupid reason. I could not sleep so I did not think it was safe to drive. I had a migraine and could not drive with my meds. You know any little reason. I have gotten better. But now that I am really sick no one gets it. I can be having 30 BMs a day and everyone in my household will be mad at me for skipping work. I was off work for 9 months because I was vomiting 10 times a day and having D 20. Still no one understood. They thought somehow I should go to work while doing that.

Just because you cannot see my disease does that mean I don't suffer. When I can't make it through a meal without having to stop to have D. I can't drive to work without having to pull off to be sick. I am so tired from all the D and lack of nutrition from my disease I don't feel like getting out of bed. How can I get them to see this is not my fault. I would do anything not to have this disease. Not to spend money on medicine and doctors. Not to miss work. Not to have to have several sigmoids a year. Fill my body with poison. I'm so sick of people being mad at me and it adding to my stress.

Sorry to vent

What does your family consist of?

In my household is my husband, my mom who is disabled ( she does not give me a hard time) and my husband's mom. We all pool money to make the household function.

ahh that blood idea makes sense. i think my family saw enough of that in my portable toilet in the hospital since they were the ones to dump it in the toilet. they know i'm not making stuff up.

there's a great book i had my mom read (and dad but i doubt he read it) that talks about our struggles. it's called "colitiscope." it's a funny book written by a guy with UC, but it's very real and honest, too.

Thanks for the book suggestion bananagirl :)

I went years with this disease feeling self contious, ashamed, confused, alone...etc. Now that i'm older, and finding out just how many people this effects, Im trying to be more proactive and educate my family, friends, and anyone else that wants to listen.

Guess I'm trying to be a glass half-full kind of person. Everyone here is so helpful and educating. Definately gonna look into that book. Thanks.

TJ

I couldn't have felt more alone after my initial diagnosis with uc and the resulting constant fighting with my new wife over uc. She yelled at and then hung up on my drs office when they called the house for appointment reminders. Refused to go to the hospital to pick me up after the colonoscopy. She wrote terrible things on my medicine bottles, kicked them, and so forth. She'd tell me things like "why can't you just hold it like an adult?" and such. We fought pretty much daily for months. We nearly got divorced.

All of the fighting has stopped long ago, and she has apologized for it all. I'm currently flaring and she's been good this time around. She's trying her best to encourage me and smile when she can. She still has issues relating to all of this, gets moody and quiet at times, as we still can't talk about my drs appointments and things like that together. It's a don't ask don't tell policy when it comes to drs appointments which keeps things good, and for now that is a huge improvement. She has serious distrust of drs, some clear medical phobias, and some difficulty coping with someone who has a chronic illness. I'm playing the long-game and things have improved considerably with us, and I am hoping in the end its all works it way through (and she comes 100% around on this).

It certainly isn't easy dealing with uc and family/spouse that just doesn't get it or worse yet is an agitator.