How do you handle it all???

Crohn's Disease Forum

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May 1, 2012
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I quit work just over a year ago. At that time i had (although i didnt know what it was) A large abscess--peri rectal, and i couldnt walk without pain, or sit or stand or move or sometimes breathe......i had no idea what was going on at that point. I remember my last day of work i was So sore.....i couldnt do anything without shaking cause it hurt so much. I still had non stop diahreea and i had to poop leaning to the side so it didnt hit the sore area so much. I am usre if anyone walked in on me they would have thought i was falling off the toilet!! lol

I was running a home childcare. I had 3 kids under 3 all in diapers, and it was NOT easy. I couldnt do what i was supposed to do with them, i couldnt take them outside, i couldnt lift i couldnt do my job. I ended up that weekend with the rupture, and taking time off which eventually led to me quitting.

For anyone who knows d/c it is a hard job to take weeks and weeks off due to illness as parents need to find other care and well....once your child is happy somewhere else.......

So i did end up not going back.

Financially i do have to work. We cant make our bills, barely make our mortage each month. The stress of it all hurts me. And i am afraid that my poor dh is feeling like he cant do anymore.

My girls are older 7yrs and 17 yrs. Yes 10 years apart. How do you make them understand??? My 17yr is old enough to , but she is also at that age where she is still selfish, her boyfriend, her friends etc come first. She does work 2 pt jobs, so i try not to lay too much on her. But i dont think she completely gets it . Is it wrong of me to print out info for her to read???? So she knows what i am going through??? maybe if she sees it in black n white???
I need her to at least look after herself more. Be more responsible for her self and her belongings. I have tried to tell her , but teens...well....i was the same way i was sure. Maybe she is worried? i dont know.

My youngest she understands that mommy is sick. I tried to tell her that my tummy is mad at me and doesnt like when i feed it wrong or too the wrong thing and then it gets angry and hurts and makes me poo alot.

She kinda got it. She is good to a point. She likes to be my helper and look after me. And when i am really down and go to bed she is good at entertaining herself, or sitting with me and playing quiet or reading.

But it seems for my whole family, including my husband that if i am not down and out and choose to go to bed they think i am can manage. if i am laying on the couch then i must not be that bad.

I have a hard time making them understand that even if i am on the couch i just want to be with my family. It doesnt mean i feel better.

How do you work???? how do you get your family to understand???? How do you live day to day without screaming and crying and wanting to throw things?????
 
Oh you are so not alone here!!

I do work. Right now, I just have one part time job, but before I was working 2 part time jobs and it was rough! It was really rough. Especially right before my surgery. I was extremely ill and just not show how I made it through the day and then came home and took care of my infant.

My husband is fairly understanding about it all. My daughter, is only 1 so I haven't had to explain it to her yet. However, he does think that sometimes since I try to suck it up and do stuff, that everything must be fine and i am fine. Which is not usually ever the case. At some point though, it gets old to keep explaining that you feel like crap. It really is hard to get someone to fully understand what you are going through, if they haven't been in your shoes.

I pretty much what to scream, cry or throw things, almost every day!! Then, I just try to make sure i do something that I like to blow of steam. I love to sit outside with a good book for a little bit and catch some sun, or I LOVE to go to the gym and get some cardio in, when I feel like I have some energy.

This whole disease is so frustrating. It does affect our lives and how things go for us.

I'm sorry I don't have much advice, I just wanted you to know that I can empathize with you on how difficult this can be.
 
this happens soo much! my boyfriend, bless him, when im crying in pain he is the most sensitive person i could ask for, but if im just having a day where my energy is low and i need to stay in bed to sleep a little longer, he thinks im being lazy! unless im rolling around in agony, im ok! i try to tell him over and over that im in pain all the time, and i wish he could see it, but he just doesnt understand that we can function but still be in pain.

I think unless you've been through pain like we have, or through similar situations then they wont ever understand. Thats why i come here, because everyone here does understand. This is my place to vent when im sad or angry, OR if i feel like iv done something really amazing that doesnt seem like alot to him but people here realise what an acheivement it is :)

we are all here to support eachother, and believe me, i think id be throwing things and screaming if i didnt! xxxx
 
I was talking to a woman at work, and she was sympathising with my first trimester pregnancy tiredness. She said 'there's nothing quite like it, especially when you just hit that wall'

So I replied 'actually, there is- I felt like that every day with Crohn's!'

But at least now I have an analogy that a lot of women can sympathise with. They just weren't getting that Crohn's tiredness is different to had-a-long-day-at-work tiredness.

I think you just have to keep at it. When my boyfriend has man flu and is spending the day lounging on the sofa asking for warm drinks,mI tell him 'now you know how I feel!' I do think he's slowly getting it!
 
OMG that is the best analogy of it..lol...I never thought of it that way. But it is. I remember being this tired when i was preggers and it is the same feeling.
 

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