I’ve been having a hard time lately.
It’s been three weeks since this most recent Crohn’s flare-up got pretty bad. It’s been almost three weeks since I sought out a new doctor (still adore him, by the way) and almost three weeks since I began taking a relatively high dose of steroids.
And it’s been three weeks without any real improvement.
There have been fleeting good moments — a short run last week, a salad for lunch one day that didn’t immediately rip my stomach to shreds and a few quality hours with great friends on Saturday — but the bad, more frequent times are the ones that are weighing on me so heavily.
Life should be awesome right now. It’s summertime! I got a promotion at work! I’m going to be on TV tomorrow! (Oxygen, 10 PM EST, “All the Right Moves” — check it out.)
I know I’m a lucky person because I have wonderful friends and family and a roof over my head and clean water to drink and fresh food in my refrigerator.
But lately, that stuff is lost on me.
When I first started feeling sick this time around it was frustrating. This year has felt like one flare-up after another, and the flares never seem to fully go away. I was hoping this time would be different, though. I made the effort! I got the doctor! I guess in my mind I thought the mere act of “having a doctor” would mean he had a secret cure just for me.
Well that’s not the case. So…bummer.
Normally I go on steroids and I start to feel markedly better within 24–48 hours.
This time, we’re going on multiple weeks and my symptoms have barely changed. My doctor checks in with me regularly, and for now we’re just in the testing phases: bloodwork, CT scans, an eventual MRI and colonoscopy — all the really sexy, fun stuff! He doesn’t want to push pills on me or crazy medicine without being extremely thorough first, and I love that about him. The fewer pills I’m on, the better, and so I’m doing my best to remain patient.
Beyond the medication, I’m trying to pinpoint other factors that are making me unwell. Forget stress, because I’m over that. But I’ve put a decent amount of time into reading everything I can possibly find about food and diets and triggers — and I’m completely burned out from it.
I have lost interest in trying to decipher this disease. I want to give up. I am no longer fascinated by specific diets that will make me feel better. One day I will eat a bowl of plain pasta and feel great (Tuesday night), and the next day I’ll eat the exact same thing and it’ll send me to the bathroom in pain for 40 minutes (Wednesday night). Literally the exact same meal with completely different results. I don’t get it.
I’m tired of trying to figure it all out and I’m tired of everyone telling me what I’m doing wrong. People are trying to help, but everything comes off as criticism and makes me feel like I’m just wrong all the time. I have grown so tired of putting energy into simply taking care of myself that last weekend I really convinced myself I need a puppy, if only because then I can be distracted by taking care of something else — and maybe being more successful at it, since I don’t seem to be doing so hot in the “taking care of Ali” department.
Also I’ve heard that all of life’s great problems are solved with puppies.
I joke all the time about how I love attention and I would willingly spend enough time in a spotlight to get a tan. Most days I’m happy carrying a conversation with a stranger and filling up my social calendar however possible.
But for the past few weeks, I’ve been anti-all that.
I don’t want to see or talk to anyone except Tyler.
I hate when people ask how I’m feeling. I hate that so many people last week chose to ask me if I plan to defer my New York City Marathon entry (come on people, it’s still far away). I hate that I keep canceling long-standing plans with friends because I’m just not well enough to leave my apartment, or because I’m just not up for it.
The first thing everyone — friends, family, coworkers, cab drivers — asks me each morning is “How are you feeling today?” I know they’re all well-intentioned and it’s amazing that people care enough to ask. But every time I reply and say “not great,” I feel weak and pathetic. Every time I email my boss to say “Having a rough morning, will be in a little late,” I feel like a failure for not being there to lead the team she put me in charge of. And every time I tell Brian I don’t feel like going out — again — I feel like a loser.
And so I lie a lot. I tell most people I feel fine when I don’t because I’m sure they have to be sick of hearing about it at this point. And I’m tired of talking about it because I feel so whiny — but at the same time, it’s something that has pretty much taken over my life at this point.
I feel like a brat saying I wish people would stop asking me how I’m feeling, but talking about it just reminds me of how not strong I feel right now. It reminds me that as hard as I try to distract myself from the fact, I am sick and I do have a disease.
A gross disease, no less.
As much as Crohn’s disease is so physical, I truly believe that the toughest part for me lately has been getting a mental grip on all of it (and, um, judging by the nonsensical writing happening here I think it’s clear to all of us that I have no such “mental grip” locked down). It’s hard to go through the day to day motions of life feeling like you have no control over your body. And you know me by now: I’m a big big fan of being in control.
It’s also challenging because people love trying to convince me that I can, in fact, control this disease.
“My sister’s husband cured his Crohn’s by going Vegan!”
“My friend has colitis, which is similar, and she decided to go Paleo and after two days of eating beef jerky she was symptom-free!”
“Seriously, just cut out dairy and gluten and you’ll feel so much better.”
I’m open to suggestions. I’m trying things. I’m doing my best. People often don’t understand just how individualized this disease is, and that what works so incredibly well for one person (your friend’s mom’s third cousin) may not be at all successful for someone else (me). I’ve been eating a lot of super-finely chopped salads for lunch, and those are usually OK — yet some people can’t go near raw vegetables during a flare. Dinner for me is some sort of plain pasta, usually gluten-free just to try it out, and that mostly digests OK as well…sometimes.
So what’s my point with all this complainy stuff?
I’m not myself lately and it’s killing me.
I wake up in the morning and it’s impossible to predict what kind of day I’m going to have. I used to wake up hyper-positive and I’d just hope the day would follow suit, but it’s hard feeling “yay life!” when I spend up to an hour in the bathroom every single morning. This morning I just wanted to ride my bike, which I haven’t done in a week.
But I was too exhausted to get out of bed and when I finally did drag myself out from under the covers, I was confined to the bathroom where things were not pleasant. So I just came to work, feeling defeated.
I know people will criticize how I handle this disease. Everyone has opinions and people love to share them. Everyone’s a critic. Everyone’s a doctor. Everyone’s a Crohn’s expert — except me. And to many people, I don’t really look sick. In fact, last week a colleague told me I “look great!” and asked if I’ve been running a lot. “Nope. Just Crohnsing.”
At the end of every day, I’m just trying to do my best. I’m trying to take care of myself and it feels selfish and it is very draining. I imagine I’m not fun to be around and as much as I try to force positivity onto myself and do the whole “I’m thankful for life” thing, ultimately I find myself getting frustrated and sad. But I’m trying. And I hope that soon whatever persistence I have will have me feeling like myself again. Because I think I used to be fun…
You know who is really fun? Tyler.
And to all of you who let me go on and on, I hope your weekends were lovely and your Mondays are on a so-far-so-good roll. If you’re feeling healthy, enjoy it and take advantage. Do something awesome. Skydive. Then report back.