Living with colitis is like having a really mean, bitchy friend follow you around 24/7. When they finally shut up for a moment, you want to bathe in the peaceful silence forever. But you can never completely relax and let yourself go. You never know when they might get all loud and obnoxious and over-bearing again.
I’ve been spending a lot of time the last few days reading blog posts written by others with Ulcerative Colitis. They have me feeling 4 different ways: inspired, heartbroken, thankful, and petrified.
Inspired by the words of other life-long warriors who understand both the physical and mental effects of UC and word their positive insights and wisdom in eye-opening ways.
Heartbroken for those who cannot achieve remission, who cannot find a medication that suits them, who are too tired to leave bed, who are losing more and more weight and withering away, who see the inside of a hospital more than they see the sky.
Thankful for the progress I have made and that my treatment plans have always taken effect fairly quickly.
Petrified of not knowing how far my disease will progress throughout my lifetime since every case of UC is different and there is no way of knowing what my future holds.
The “what-if” and “why-me” questions I face daily due to this disease are endless.
What if my stomach begins to hurt in the car? What if there are no rest stops on the highway and I go into stomach spasms without a place to stop? What if this meal upsets my stomach, even though its something that shouldn’t? Why did this meal upset my stomach when it shouldn’t? What if I shit my pants in public? What if I shit my pants in the car? What if I have to go to the bathroom 4 times while out to dinner? Will people at other tables, unaware of my disease, notice and make fun of me? Why do I run to the bathroom in such horrible pain only to not even have to go to the bathroom at all? Why do I have to bloat so horribly that I look 6 months pregnant? Why does my body attack itself? What triggered my autoimmune disease? What if I get sick today and the doctor prescribes antibiotics which I can’t take? Why do my steroids have to make me so fat and ugly? Why does my medicine give me random spells of horrible headaches? Why does my medicine make my hair fall out? Do other people notice my hair thinning? Am I going bald? Are my prednisone induced mood swings noticed by everyone around me? Why does Ulcerative Colitis exist?
My head is spinning just from typing all of those questions out. Now imaging thinking them repeatedly throughout your day, every single day, for the rest of your life. I’ve only been through this 3 and 1/2 years and I’m already quite exhausted.
The emotional toll of this disease is astounding. Some days all I can do is think. Think about my sickness over and over, as if there is some puzzle piece I am missing. I reiterate “this disease is chronic” and “it is never going away” to myself constantly but that still hasn’t really sunk in yet. Perhaps it never will.
I find solace in quotes. That may sound like a very typical/girly thing to say, but I’m not talking about the “live everyday like its your last” kind of quotes. I’m talking about the real deal, serious kind that make me really reflect on my situation. Sometimes they help me to see my life, my battle, in a whole new light. Sometimes they just remind me that I am not alone.
I’ve included some of my favorites.
“She decided it was time to let go and move forward, so she packed only the best of everything she had been through: the fragrance of burnt hopes, the fine nectar distilled from her fears and a precious collection of each sweet bruise etched on her soul. And off she went, arm in arm with the universe.” Neelam Tewar
“Be patient with yourself. Nothing in nature blooms all year.”
“And I said to my body, softly, ‘I want to be your friend.’ It took a long breath, and replied, ‘I have been waiting my whole life for this.'” Rupi Kaur
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen.” Elizabeth Kubler Ross
“The best thing you could do is MASTER the chaos in you. You are not thrown into the fire, YOU ARE THE FIRE.” Mama Indigo
I hope this post finds the computer screen of another soul living with colitis, or any other invisible and chronic disease. I hope that if you are struggling one of these quotes can help to get you through the rest of this week, the rest of this day, or even just the rest of this minute.