I went home this past weekend for my first refill on my pouches. It was also my first time back home since I have been living life again down in Columbus. I’ve been back to work, back to a normal life. My boss and I were discussing what normal meant for me now and how to live out these days to the best of my ability.
In the midst of all of this, it’s hard for me to take the time to be thankful that I currently am able to have my normal life back at all. In reality, I haven’t been living life for almost 2 years. My normal was anxiety, frustration, pain and bathroom hunting. When you’re sick it’s hard to look past anything but your disease. Your disease becomes your entire life, it consumes you. You cannot do or think anything without having to remember, “I’m sick, and that affects me and everyone else around me.” Your disease becomes a part of you and for me, it was the entirety.
Sometimes I find myself almost missing Colitis. Not in a way that anyone would understand unless you have been really sick. It is hard to explain and it would probably infuriate my friends and family to hear me actually say that. What I mean when I do say that I miss Colitis, is that I used my disease as a crutch and an excuse for so long, it’s strange to not have that there anymore. I used to not eat things, not do things, not get out of bed and blame it on Colitis. Now, I have no excuses, because all of a sudden it’s gone. Just as quickly as I spiraled into the black hole of serious sickness, it was diminished. Is it because I was finally used to being sick? Had I accepted that as my normal for the rest of my life and clung to that as a constant that would last forever?
Not that it would be good or anything to look forward too, but at least I knew that I would for sure always have Ulcerative Colitis, even in remission. At the same time that is what makes me so thankful for my surgeries. I have a new constant now, as my boss told me today, my “new normal,” that is being healthy again.
I often told people when I was explaining my disease to them, that I forgot what it was like to feel good. To wake up in the morning and feel alive, to feel no pain. Every morning I would wake up and feel immediate excruciating pain. There was no doubt about it. I could never schedule anything in the mornings because that was my worst time of the day. I would try to leave the house and have to run up the stairs to our bathroom 5-10 more times before I could actually get in my car. Then I would get in the car, freak out about not being by a bathroom and have to stop 3 more times before I would even get to work.
I would always think when I was in the office that the people that occupate the office above ours thought I was weird for going to the bathroom so much. The public bathroom in our office is up a few stairs and through a loud slamming door. I would cringe every 20 minutes as the door would slam on my way to the bathroom. I remember feeling so guilty like I was disrupting their work. All of my friends and family also knew my normal as leaving them to sit at tables alone as I would go to the bathroom during dinner, movies, even just normal conversations were interrupted by my pain and the unpredictability of my disease.
The normalcy that you become accustomed to when you have IBD makes you stronger. It definitely did for me. People and family often ask , “how did you do it? how did you get out of bed? how did you live?” My answer is always the same, “because that’s what I knew how to do.” I knew how to deal with the pain. I knew I had to get out of bed every day and try, because if I didn’t I would only feel worse. I survived because I was supposed to live to tell this. I was given this for a reason and that reason wasn’t and still isn’t to lay in my bed and not get up.
My new normal is learning how to live disease free, and accepting my ostomy as a temporary normal. Do I like this new normal necessarily? No, not right now. Am I proud of this new normal? Beyond proud. Proud of myself, my family and my friends for making it through the old normal. That normal took mine and my families lives for 2 years.
Adjusting to my new way of life has been difficult. I was laying down yesterday because I started a new medicine to help me cope with everything that made me feel not so great. I was thinking as I was laying there how many times I probably would have been to the bathroom if I still had my colon. I took a second to accept and appreciate my ostomy a little more. I could rest when I wasn’t feeling so well because my disease is gone and my new normal is taking over.
This year is about change. It’s not about what is going to ALWAYS be normal, it’s about dealing with what is normal for me now. In about 2 and a half months I’ll have a different normal after my second surgery. And 6 to 8 weeks after that I will have my ideal normal. A life that I haven’t lived for a long, long time. I will have my body back, my old normal, only better. As my boss would say, this is my journey, your journey, not the destination.