Crohn’s Disease: A Day in the Life
While I work hard to provide you with accurate and up-to-date information at the time of publishing, as time passes some information may no longer be relevant or accurate. The field of medicine is a constantly evolving science and art. Thankfully! In 1951 a woman was given a lobotomy to treat her ulcerative colitis. That wasn't even that long ago!
I am half in and half out of a dream. One of those dreams you want to stay in but already know that you’re mostly awake and if you wake just a bit more you’ll lose it. I lost it. So I roll over toward my phone.
The bed is empty. No dog. No cat.
It’s early I think. Maybe 7 or 8 at the latest? I think about laying here a bit longer going through my morning routine of scrolling through every social media app that exists on my phone.
I glance at the time. 12:22 PM!
I moan internally. How have I slept half the day away already? I am already disappointed in myself.
I walk into the bathroom and I weigh myself.
the scale blinks back at me. I don’t know what my thoughts should be but they certainly should not be this complicated.
I’ve lost weight. I can’t figure out if I like this or not.
I secretly do and I feel bad.
If I gain weight then I am upset, but I am also “healthy.” If I lose weight then I am happy, but also sick. Years of medications, hospitalizations, surgeries, etc. and the weight fluctuations from them have left me with an even more distorted relationship with weight than my teenage self.
I step in front of the mirror and pull my shirt up.
Stomach is flat.
I laugh to myself knowing that as soon as I so much drink a sip of water that will change because of my motility disorder. I run my hands over my head to smooth the pony tail I slept in last night. I nearly cry over the circumference of my hair. I glance to the floor where there are clumps of it.
My hair. I’ve got to quit losing hair. it’s all over the bathroom, all over the shower, just… all over. I feel lucky that I have hair so thick that I can afford to lose a lot without anyone noticing, but still. It’s time to stop. I was at the salon this past week where Danielle felt my hair and was surprised. She has been doing my hair for a long time now so when she confirms how thin it is that’s when the truth I know really becomes true. Does that make sense? Probably not.
I wander into the living room and I sit down on the couch and pull my computer onto my lap. My thoughts keep going back to how disappointed I am for sleeping the day away. What is this life? This life…
I should blog about a day in the life today… yes, that is what I will do. Blog about it Sara, that’s all you’ve got.
With my computer on my lap I scroll my Facebook news feed. Because my world has become so deeply entwined with the IBD community I see so many pictures of the Team Challenge half marathon from yesterday. Instead of being proud of you or happy for you I feel angry and envious and I get even more mad at myself because I feel that way. I start thinking about it and decide to message two IBD advocate friends of mine who might understand how I feel.
It feels better just messaging them about my feelings.
I am afraid to mention that I am envious and jealous here, but I am. I am jealous because this is my “good”. This is what “doing well” has been like for me for as long as I can remember now. My “doing well” is not running a marathon or being able to work out. It’s being out of the hospital. It’s being able to get out of the house every now and then, to sometimes work part time. I have perfected the art of doing things while smiling, while using a tone of voice so energetic you’d never know I was suffering. I will laugh and smile you into thinking I am doing well because who really wants to hear the truth?
I think about my weekend and I become even more sad. Me talking about how I will just move back in with my parents. How I do not want to be a burden. How I cannot help it. Not that I am being blamed but really, it can’t be anything but my fault.
A weekend of sadness mixed in with attempts to get out, do things, smile.
Saturday I spend time with a new friend who has Crohn’s disease and loves donuts (what more could you want in a friend?) because this is my world now. People with Crohn’s disease and ulcerative colitis who get it. They are my friends these days. I do not much more than sit in the hot sun for a few hours and somehow my body seems to think it did a lot. My body aches all over from arthritis and I tell it to hold on for two more days because my infusion is coming up and hopefully that will help. Something has got to help.
I go see The Fault in Our Stars and in a movie theater full of sobs I do not shed one tear. I have no more to give after the weekend I’ve had.
“Okay.” “Okay.” Hazel Grace Lancaster and Agustus Waters say.
Thank you Hazel Grace and Agustus for understanding me. I feel like I am watching that movie all by myself. Like it is a special gift just for me because no one else in that theater can possibly understand it on my level. I know that isn’t true but…
I come home and I decide I am going to work out. Why the hell did I decide that? I still don’t know. And only after a set of squats is my heart beating out of my chest. I hold my hand over my heart and feel it’s fast pounding.
Why? Why is this happening? Can I really not do something so simple as squats? This can’t be real. Is it because my hemoglobin is low? Is it the anemia; the way that my organs are fighting for oxygen? Is my body really this tired? Remember when you were an athlete Sara? The days that you could put men to shame in the gym? It’s true. It’s true and I want to hold on to those memories for dear life because that was me. I actually did that! But now they are just memories.
I go lay down in bed thinking about my weekend. My eyes well with tears over how utterly lonely I feel. The loneliness that exists when one is in a crowded movie theater but feels entirely by themselves. 3 stupid days and there was
too much fighting,
too much faking,…
I lay in bed thinking about The Fault In Our Stars and drift off. Waking up at 12:22.
This post was edited on 1/11/2020 for appearance, grammar, and clarity, as I transfer my site from Tumblr to WordPress and rebrand Inflamed & Untamed