I’ve been dealing with a case of writer’s block this week. I feel like I have lots of things that I want to talk about, but nothing that seemed to want to come out naturally and the last thing I want to do is force anything. So I asked for help on my Facebook page and Miranda posted this: “How to find motivation when you are exhausted and so fatigued from this horrible illness?”
This is actually an appropriate post because I’m having a bit of a down day. I had a pretty rough day yesterday. It started with a 12-hour workday and ended with my dog eating one of my favorite pairs of shoes and another round of silver nitrate sticks. By the time I was going to bed, I was so exhausted, but I couldn’t fall asleep for the life of me. The silver nitrate was burning and I couldn’t get comfortable and I’m pretty sure I didn’t sleep more than 3 hours. So I’m dragging today. The silver nitrated area still hurts. I’m dehydrated and have only made it through half of my daily goal and it’s already after 5:00.
When I was dealing with active Crohn’s, I felt like this and even worse day after day. It was a struggle every single morning to even get out of bed. Especially for me because my Crohn’s was always most active in the morning. I would run to the bathroom probably 6-10 times before noon, but then only go another 3-5 times the rest of the day.

But the exhaustion is one of the worst parts. I never slept through the night and always had to get up at least once to use the bathroom, often even two or three times. And after working a full day, the melancholy would settle in and I never had the energy to do anything in the evenings besides lay on the couch and watch TV. And usually on the weekends, I still didn’t want to do anything. I know every time we had someone invite us to do something or go out somewhere, I would immediately make a sour face in my head. I would think that I didn’t want to go and would rather just stay home. But I also knew that I’m in my 20s… the last thing I want to do is to spend all of those years in bed or staying home. And that has been my biggest motivation.
I have never wanted to let Crohn’s get the upper-hand and I was determined to never say “no” to anything because of my Crohn’s. And while that is not always possible, it has kept me going many times that I would’ve otherwise stayed home. It has also at times lead me to hide in a corner or crash on someone else’s couch rather than taking part in whatever we were doing. But still, there are many times that I have gone out and had a great time and felt even better.
But living like this can still wear on you. Prior to my surgery, about once every month or two months, I would have to call in sick to work just to have a day off. And on those days, I would literally stay in bed and sleep the entire day. My husband never understood how I could just sleep, but that’s really what I needed was a whole day to catch up on rest. The problem that arose was not having enough sick days from work and I’d end up having to take unpaid time off or just have to suffer through it.
I remember the week before my wedding, I was so sick, not with Crohn’s, but with some sort of bug. I felt horrible that whole week, but it was July and I had already run out of sick time. So I trudged my way through the week, went to Urgent Care, got a shot of antibiotics in the bum, and thankfully I was feeling better by my actual wedding day.
I know it is so different for each individual with Crohn’s disease or ulcerative colitis, so you definitely have to listen to what your body is telling you. I also know there are many times that we are too sick to socialize, but I would encourage you to not let just “feeling down” hold you back. I think it’s easy to get stuck in a cycle of feeling down so you stay home alone, but then you get depressed that all of your friends are having fun without you, which leads to feeling even more down. It’s hard to break out of that. I’ve been stuck in it many times. But I have found that pulling myself out of bed, cleaning myself up, doing my hair, putting on a pretty dress and going out with friends has pulled me out of that funk and I end up feeling even better.
For those of you who know and understand Spoon Theory, you’ll probably have to borrow some spoons from the next day or some day in the future. It’s a balancing act. So have fun when you feel you can. And don’t be afraid to spend a whole day in bed when you need.