Until a few days ago, I was certain I wouldn’t return to college this semester. Between my crippling depression, incapacitating executive function and concentration issues, and my physical weakness from POTS, living independently in less than two months while taking senior-level classes seemed like an impossibility.
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.
With this latest flare, I’ve been struggling with an eating disorder again. Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual. In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014, at nineteen.
This week, I celebrate my two-year blogiversary.
I started The Dreaming Panda when I was at my absolute worst—I couldn’t walk, I’d lost thirteen pounds, I could barely stay awake, and I was morbidly depressed. This means it’s been two years since that first trip to the ER when everything got so bad and precipitated a resolution to eight years of misdiagnoses. So I’m now two years into my recovery journey.
With another year of college behind me, I recently packed up my apartment and headed home. Although I was unbelievably busy this semester and definitely overworked at times, I had a great junior year. I’ve truly put down roots in the college town where I spend the school year now, so it was with mixed emotions that I pulled into my parents’ driveway for the summer.
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 know I said I’d start a series on the different treatments I’ve tried, but I’m pausing to tell you why I haven’t been able to post in several weeks…
I caught some terrible virus and have been having symptoms again. As a result, I got behind in school, so I’ve had to use all my time to get on top of things again.
When I was first diagnosed with PANDAS in 2014, my doctor said the treatment plan was to give me “the whole kitchen sink.” In other words, I would receive the full range of therapies, many of them all at once. It was unscientific, since this made it hard to tell which treatments turned out to be the most effective, but for a girl who could hardly walk and had lost over 10% of her body weight, this approach was necessary.
During my first few months of treatment, whenever anyone asked me what percent of myself I felt I was, I usually said 80 or 90%. Although I believed this was accurate, I was grossly overestimating my level of wellness, because I’d forgotten what life was like at 100%. As I’ve said before, I’ve never realized how ill I’ve been until I’ve gotten better.
To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.
