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- October 13, 2016 by AliThings That Make Having Crohn's Easier (And A Few Things That Make It Worse)
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I Want My Life Back
Well if that’s not the whiniest little post title of all time…
One thing people tend to tell me when I’m Crohn’s flaring is that I “manage to stay so positive and optimistic.”
Maybe online it seems that way. It’s really easy to sit down and make a list of things that make me happy without harping on the negatives. Thankful Things Thursday, for example, comes naturally to me because I genuinely enjoy being a happy person. I prefer seeing the good over the bad.
But despite the claims that I “stay positive all the time,” I’m here to tell you that’s not always the case.
Things have gotten hard lately.
I’ve been on the steroids for a week now with no real improvement. The only change is that my fevers have gone down, which is great — see? appreciating the little things! — but it’s not enough.
I don’t feel super positive right now, and I don’t feel wholly optimistic.
I feel like I am back in that scary place I was in last summer, when I had been sick for so long and there didn’t seem to be an end in sight.
It’s been a rough go these past few weeks as my health has begun deteriorating. I had plans lined up for every night last week — dinner dates! fitness classes! Broadway shows! — and I had to bail on all of them. (Not true: I did make it to see Cinderella on Broadway Friday night, which was lovely.)
I can feel myself pushing people away. I won’t make plans with them and I don’t talk to them because I don’t like making my disease a burden on anyone else. When people ask, “How are you feeling today?” I feel like a loser for telling the truth, which is that I still feel terrible. I’m still in pain. I’m still in the bathroom every five minutes. I’m still having panic attacks every time I am more than three feet away from a restroom.
I try to bask in the little victories, like being able to walk a full avenue without having a meltdown and busting into the filthiest McDonald’s you’ve ever seen (28th and 6th…avoid). But the little victories feel few and far between, interspersed between letdowns, disappointments and more tests that don’t tell me very much.
My C-DIFF test came back negative, and my bloodwork shows that I’m nicely anemic.
That’s no surprise. A sketchball nurse came to my apartment last night to take my blood that’ll be sent to a sketchy lab where they’ll run mystery tests and determine the Remicade levels in my body.
It’s all a waiting game, and I’m tired of being patient. I want to be fixed.
Another thing that makes this tough is that this disease isn’t visible. I don’t really look sick, except for those few times I came into work last week wearing sweatpants and covered in a fever-breaking sweat. But if you see me sitting at my desk, I look like I do any other day. I don’t look sick. So if I choose to, I have to just tell people I’m sick, and that makes me feel like I’m doing a lot of whining and complaining. It would be easier if people could just, you know, feel my pain in tandem or somehow see that I’m ill. I don’t want to have to explain why I would fight the elderly for a seat on the subway.
I know this all seems repetitive. That’s because it is.
Unintentionally, I find myself looking at life cyclically pretty often. That was especially true this past weekend.
On Saturday, as I writhed around in pain and felt sorry for myself for not being able to leave the apartment, I thought about where I was on that same day two years ago.
I was in Washington, D.C., running the hell out of the National Half Marathon. My goal that day was to break two hours and I knocked out a 1:44:48 finish time (my half-marathon PR to this day). It felt effortless and amazing, and I felt so strong and healthy. Crohn’s disease wasn’t even on my mind, nor would it be for months following that day.
Fast forward to 2012.
Right now, March 2012 and March 2013 are striking a shockingly close resemblance to one another.
Last year, I stood on the sidelines of the New York City Half Marathon, cheering on the hoards of runners from my perch at Engineers’ Gate, one of my favorite spots in NYC.
I felt sick that morning, I remember. Brian was running the race, and I spent the waking hours taking over his bathroom as he got ready. That’s fair, right? I’m the best.
But that day marked the first day of a Crohn’s flare-up that would plague me for the majority of the year that followed. That was also the day I decided to withdraw my entry from the Eugene Marathon and abandon marathon training until the fall.
Now here I am in 2013. A year later, but everything feels the same.
I thought this year would be a fresh start and the hell from 2012 would be behind me. I’d be happy and healthy all life long! Or at least for a while.
On Sunday, I stood in that exact same spot in Central Park, ringing my cowbell and supporting the runners blazing by.
Everyone PR’d this weekend. You know that already. The running world was filled with optimism, positivity and fastness. People had the races of their dreams.
And I felt so defeated, so angry and so jealous.
I wanted to feel supportive and excited. I put on my winter hat and my happy face!
But I couldn’t get excited. I couldn’t join the spectator masses and their “You inspired me to train hard and PR now, too!” chants.
Maybe that makes me a brat. I realize how it sounds. But I played a major game of “It’s not fair” this weekend and I’m letting it slide.
I just want what everyone else has. I want to wake up and feel fine.
I want to take the subway to work. I want to live without pain. I want to train for a race — meaning I want to have a full training cycle where I get to work hard every single day in pursuit of a lofty goal. I want to run. I want to PR. Not because everyone else is doing it, but because that’s what I used to be able to do, too.
I don’t know when I became “the sick girl,” but it’s not a job I’m interested in holding onto for very much longer.
I just want to be fixed. I want more of the good times. I want my disease to stop affecting the other people in my life.
Simple requests, really…
I’m heading to L.A. tomorrow for a few days for a conference. I think it’ll be good for me to get offline, get away for a bit and hopefully come back to less swollen intestines and a healthier perspective. Because no one wants to come to my lame pity party, right? Even if I make snacks?
So today’s the last day I’m feeling sorry for myself.
Tomorrow I suck it up and deal with it.
Today I can be frustrated just a little bit longer.
Tomorrow I start to move forward.