Many of you hear me talk about Crohn's disease and inflammatory bowel disease (IBD) quite often. Those close to me see how it's affects my life on a daily basis...others don't. I do my best to solider on through difficult times with as much of a smile as I can.
Crohn's disease is more than just stomach pains and frequent bathroom visits. IBD is fatigue, depression, anxiety and fear of missing something special.
Today was one of those days where I wanted to do something but my body and mind made it difficult.
Today, we made it a point to make plans to go to UTM's Homecoming festivities and football game. I'm always hesitant to make plans because I never know how I'm going to feel from day-to-day. So, when Mandy asked if I wanted to go to the Homecoming pre-game and then the UTM game, I kind of figured I could muster enough energy for one or the other...but probably not both.
We got bundled up and took Xavier with us to "Quad-City". I got to see Xavier jump in the inflatables, pet the animals, hear the band play one of his favorite songs and even cry when trying to take his picture with "Captain Skyhawk". Those are the moments I want to experience. As my friend Szurgot says, "If the kid is crying...that's the moment...for better or worse, enjoy the moment."
Then, before the game, we decided to stop for lunch. And that's when I began to feel the fatigue set in. I was mentally and physically tired...to the point where all I wanted to do was lay on the couch.
Regrettably, I had to tell Mandy that I wouldn't be able to go to the game with her and Xavier. I had to put my life on hold for this disease.
As we passed the stadium, Mandy commented that she was sad that I wouldn't be there for Xavier's first football game.
When you're a parent, you want to be there to experience everything (or as much as you can) your child experiences. You get to live vicariously through them and be a kid again.
I didn't want to miss seeing Xavier walk into the stadium or cheering on the team, but I was completely worn out. Even if I did go, I would be miserable.
So, I came home, covered up and got some rest on the couch for a couple of hours. I felt a lot of guilt though. This isn't the first time that I've wanted to do something with my son (or my wife, family and friends), but couldn't pull myself up in order to go.
Guilt got the better of me and I decided that I wasn't going to let this disease keep me from sitting in the stands with my son.
I decided to get up and, at the very least, get there by halftime and enjoy the remainder of the day with my wife and son.
Truth be told, when I got there he was tired, cold and not really interested in the game. But, that's the moment I'll remember about his first football game even if he didn't have a care in the world whether I was there or not.
Even if the romanticized version of each moment doesn't turn out exactly how I picture it in my head, I want the opportunity to be there for it.
I think that's what frustrates me the most...not knowing what each day will bring. Will I have enough energy to see him run the bases at tee-ball? Will I be too tired to tell him about all the music I'm passionate about?
I had to come home and write all of this down before fatigue got the better of me.
Luckily, I receive my next dose of Remicade on Monday. Hopefully, I'll get more pep in my step shortly thereafter.
So, there you go...a real personal story from someone with IBD who has to learn how to live each day and enjoy each moment as it comes.
I hope you come away from this with a better awareness of what it's like dealing with a chronic illness. I'm not looking for pity...just understanding.
Ultimately, I want the opportunity to experience life and not let a disease take that away from me. It's tough, but I continue to work through it.