Even though I love to decorate my room, when I moved into my apartment in August, I could only muster the willpower to put just a handful of small pictures on my bulletin board. During my Freshman year, I’d made my room look like “an Athenian palace,” as one friend put it—at least when I didn’t leave my trash strewn all over the floor (thanks, hoarding OCD).
My lack of decor last semester was an analog of my life. When I finally turned a corner in November, I covered most of my bulletin board with posters, postcards, pictures, and swag from my first 5k race. The better I’m doing, the more things are on the bulletin board.
A few weeks ago, pictures and papers started falling off, one-by-one. I didn’t put them back.
On some level, I knew I wasn’t feeling completely like myself, although I kept trying to pretend I was okay. But more pictures kept falling…
I began to struggle through each day more and more, feeling increasingly detached from everything around me while the ever-emptier bulletin board subconsciously reminded me I wasn’t myself. Then one night, I finally fell off a cliff.
I realized I’d come down with a virus. The virus itself was hardly noticeable, but the PANS symptoms that it caused to flare were debilitating. That night, I lost it. I was agitated for no reason. I kicked at the wall and made more papers fall off the board by accident.
While lying in bed, I thought to myself, I should go run around outside. I had no purpose or destination. I just felt strongly that I needed to do it—never mind that I was in my pajamas and it was extremely cold. But then the rational part of my mind kicked back in a little, I guess I should grab my keys. It never occurred to me how little sense it made and that if I was running around outside in my pajamas at 1:00 in the morning, campus police would probably think I was intoxicated—or take me to the psych ward.
The fatigue from the virus kept me in bed, but then the intrusive thoughts started up again and were very disturbing. I was severely depressed. Sometimes I actually believed the thoughts. Sometimes I wondered if I actually wanted them to be true. I didn’t know what thoughts were mine anymore. I didn’t realize how irrational I was thinking and behaving.
During one moment of insight, I finally reached for my phone and called my parents: “Mom, I need you to come right now. I’m losing it, and the thoughts are getting scarier and scarier.”
I ended up going back on a higher dose of Prednisone again. Amazingly, after a few days, it mostly brought me back to where I was when I was at my best in November.
This week, I’ve put everything back up on the bulletin board—and I even added some new things. I’m not depressed at all now, I’m ticking less, and I’ve had no trouble with remembering words. I feel connected to the world again.
I didn’t realize how far gone I was in that flare until I came out of it. I wasn’t too frightened at the time, but now I’m terrified that a cold made me lose my mind. What a horrible idea to live with!
I could worry about it happening again. I could back into a corner and scream, “Why me?” I could stay in my room and not come out so that I couldn’t catch another virus. Or I could just enjoy all the good days I’m having right now. I can keep living and doing the things I want to do.
I’ve decided to keep putting the pictures back even if they fall off sometimes. When they fall, they’re not gone forever—they’re only displaced. It’s hard to feel like you lose huge pieces of yourself sometimes, but I know they will always come back eventually…