Tuesday, May 16, 2017

I'm different

It occurred to me the other day just how different I am from the rest of the "healthy" world.  I think about things, consider things, and really have to weigh out my options about everything I want to do where most healthy people don't even think twice about such things.  For instance -

Going to the grocery store is a huge undertaking for me.  Jay always drives and most often we go to a little town store that is approximately seven minutes door to door from our house.  It has everything we need at a decent price.  That's about all that the majority of the world considers when going to fetch groceries.  I however, weigh in the fact that this particular small town store offers two bathrooms.  One in the front of the store and one in the back of the store.  And it's a relatively small store.  To be honest, the one in the back of the store is for employees only but I have, and will continue to use it if that's closest one I can get to.  I actually dare someone to say something to me about it.  No one has though, which is probably good.  Both of these restrooms are only one stall restrooms though so if I'm having a particularly bad day (like today, I've had diarrhea 8 times and it's not even 11:30 am) I won't even consider leaving the house.  Sometimes though, we make a trip to a larger 24 hours store but we do it very late at night so there are less people and I can avoid the crowds. That helps the anxiety of being out a lot.  Because like most people, who only have to use the grocery store restroom on a rare occasion, it's the rare occasion that I don't have to use the grocery store restroom.  And it usually hits when I'm smack in the middle of the store and as far away from a toilet as comfortably possible to get to. Every freaking time! Because that's life with a bad belly.

Graduation season has brought about special things happening in my daughter's life.  Things that involve me having to leave the house and travel in the car a greater distance than seven minutes.  Her Senior Awards night was last week.  It took 45 minutes to get to where we had to go for it and of course these things are always scheduled in a manner that is not in anyway conducive to eating dinner at a decent time.  You either scarf something down before you go or you eat super late when it's over.  Well, that's what you do when you have healthy guts.  I get to starve on those special occasions.  Okay, not literally starve - it's not like me missing a meal (or 12) would hurt me or my girlish figure.  But I can't eat and then travel in a car for 45 minutes knowing we are on a time constraint and not have to stop and poop at some point along the way.  And I cannot eat after such things are over either because it's too late and I would be up all night in the bathroom.  So something as joyful as my child's awards presentation gets special considerations and planning just so I can attend.  Regular people don't think about these things. 

The actual graduation ceremony is another event I am thinking about in a totally different way than other parents probably are. They are probably worried about if their kid will trip or how long the ceremony will take because they have family in from out of town.  They get to concentrate on how proud they are of their graduate and enjoy the moment.  I, however, am really worried I might actually miss my daughter receiving her diploma because I will be in the bathroom.  And the thing is, there is nothing I can do if that happens.  I don't get the luxury of "holding it" until she is called.  I get the luxury of trying to run to the bathroom in an attempt to not shit myself in front of all those people.  That really sort of ruins the wonderful moment in my daughter's life doesn't it?  Yes, it does.

I wish I could just grab the dog and go take a walk and not think.  I wish I could just jump in the car and take off driving and not preplan.  I wish I could not have to put so much forethought into what and when I've eaten and try to judge when I may or may not have to use the bathroom and just go enjoy life.  But I can't.  And as awful as it sounds, and it does sound pretty awful, I'm realizing this as I see it here in black and white, it isn't really that big of a deal to me.  It has become second nature to me and my husband.  He always factors in bathroom stops and has been able to successfully navigate me to a bathroom so many times I can't even count.  That's why he drives everywhere - I can't be in the middle of a craptastrophe and try to drive.  It never turns out well. 

So as bad as it seems, it's just my way of life.  I'm different that most.  I have to consider things that others don't.  Yes, it's a pain in the ass - literally - but it is just how we do what we do. 


Anita Tansley said...

I have had crohns for years .only diagnosed two years ago
.my savior for a near normal live is Loperimide.2 four times a day and my life has been transformed .my doctor says if it works carry on I also take codeine every day for another problem so combined with loperimide allows me to go out without looking for a toilet.Codeine is not really recommended to be taken daily but it is that or sit on the toilet for the rest of my life.it has transformed my life .love to all you counties out there .THERE iS a way!!!!

Katherine Riemann said...

Soooooooooo glad I found this. Trying not to wallow in my pity party for one, so it's great to see I'm really not alone. I'm third gen in my family CD, colitis with perirectal coplications and a bunch of other, pardon the pun here, but "weird shit" the doctors can never explain except to say it's probably the CD and give me another lovely med. I'm at the point now where I need to wait about ten minutes after I take all my pills before I eat breakfast because I'm a little full��! Looking forward to following along and seeing how things go for what I am going to say are "my people", because only someone else with CD can understand just how much of your life is consumed by poop and poop related issues��

hlennett said...

Jenni I think you are so amazing! Thank you for sharing your experiences and perspectives. I'd love to chat with you about writing a post for a challenge I'm currently working on around supporting moms - especially those with chronic disease. Can you email me so we can chat?

Jenni's Guts said...

My email is jennisguts at gmail.com. I'd like to hear more about what you're working on.