Tuesday, June 27, 2017

Words from a Crohn's sufferers spouse

If I could find the words to tell my husband all the things I feel about this disease, I'm not sure he'd hear me.  Yesterday we went out of town so he could go to a checkup.  We usually go as a family, drop him off at the doctor's office and the kids and I go find some trouble to get into while we wait to go pick him up.  When he got back in the car yesterday he informed me he has a scope scheduled in a few weeks.  Ok, so now I have to find a sitter for 1-2 kids, I can take the 13 year old but I can not take the 5 year old to this kind of thing.  I always feel stuck, and it sucks immensely.  When I showed frustration about having to scramble to find a sitter for a procedure in 2 weeks, I was told that I always seem pissed off about him having procedures.  First off I do not enjoy them as much as he doesn't enjoy having them done, it's not a pleasurable experience for either one of us.  Secondly, I'm the only one who has to scramble to try to figure out the kid situation.

I said something yesterday to him about how I know he hates this disease for himself, but I hate it so much for our family.  This disease has taken over our lives in every way imaginable.  Sometimes it consumes us all as I take care of him and S.  Somedays I want to run out the door as he walks in the door because I'm so worn down.  Yesterday when I said something he said "yeah, I hate it more for myself." I didn't really know how to take that, it almost felt like we didn't matter at that point.  I wish he understood what it does to our family, how S doesn't really understand why his Daddy can't be around or do as much as he'd like.  I don't know how to tell him how I feel without setting him off and him thinking that I don't love or appreciate him.  I love him so much it hurts.  I love him so much that I could never leave him over a dumb disease.  It hurts me to see him in this situation that I didn't sign up for, but when we married I signed on to be his partner for life "in sickness and in health...til death do us part." That is what I signed up for.  Even if his disease had been as bad as it is now when we met, I don't think anything would be different.  He's my soul mate, my life partner, my husband and my best friend.

I don't think a Crohnie will ever truly understand how this disease affects those around them.  How miserable everyone can be in the middle of a flare.  How exhausting this disease can be for everyone around them.  I know he hates this disease for what it's done to him and his family, I just wish he truly understood what it does to me.  This disease isn't about me, but it sure affects me in ways he'll never understand.  Somedays I wonder if he can even see past himself, if he can see what it's doing to his family.  While we have no control over this, it still sucks.  I wish I had someone to cry out to who wouldn't think I was a bitch, someone to talk to who wouldn't judge me, someone to hug me and say "This is not the end, just a bump in the road." Someone who could be here to help me with the kids so  I could get just 10 minutes of peace.  Yesterday was an emotional day for me, a very tough day.  A day that I realized that my life has changed forever, and I'm not sure I'm ready for this drastic change.  He will always be my life partner, someone I trust, someone who can console me when I need it, and someone to talk to.