Last week, as I climbed into bed and turned out the lights, I experienced something very strange: I realized I was looking forward to my tomorrow. In that moment, it struck me that after ten years of PANS, I couldn’t recall the last time I was truly excited about waking up for another day.
“It’s Lyme disease.”
They were three words that shattered all of my expectations for recovery from PANS… Three words that I still struggle to accept… Three words that are going to change my life…
“Mom, I want to die!” I burst into the living room screaming, a look of sheer terror in my eyes.
“Please… Help me!” I plead as I crumple into a heap on the sofa, wailing and yelling at the top of my lungs.
With this latest relapse, I’ve been living as a ghost in my own life.
In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.
Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.
I haven’t had time to write a longer post for a few weeks, but I just wanted to assure you that I haven’t disappeared.
I’ve been away, not because I’m ill, but because I’m well. In fact, I’d say I’m the best I’ve been in the last nine years.
I’ll never forget when I ran my first half-marathon in May.
While some people might remember the elation of achieving such a momentous feat, what I remember most was the pit in my stomach whenever I saw a mile marker—all I could think about was how many more I had left and how impossible it seemed that I would finish.
But I made it to the end.
With Thanksgiving this week, as I returned home and sat around the table with my family, despite flaring recently, I couldn’t help but be thankful for the progress I’ve made over the last year-and-a-half that allowed me to be at that table—and for the family surrounding me, who helped me get there.
As awful as the latest flare was, now that I’ve switched my antibiotic to Azithromycin and am doing better, I’m all the more grateful for everything I have. It may sound like a cliché, but it’s true that there’s nothing like losing something to make you understand its value…