Last Friday, I would’ve said I was 100% symptom-free. I went the whole day with no tics or OCD symptoms or depression, and most astonishing of all, I could pay attention in class. My mind was the clearest it’d been in years.
But just as I’d put my life back together after the last flare, it suddenly fell apart.
To be faced with PANDAS is to have a lot of debilitating symptoms and feelings all at once that, in essence, make you lose who you are. There is much to say about what it feels like to have PANDAS, but if I had to sum up my experience in one word, I would say…
Terror.
This week, I woke up and cried.
99% of the time, I focus on how wonderful it is to be in remission, and I don’t allow myself to think about how awful my life used to be. I don’t let myself feel sorry for myself. I try to not dwell on the past. But several nights per week, I have nightmares—most of which revolve around everything that happened to me. And these are what break me.
A few days ago, as I strapped on my backpack and headed out the door for the first day of the school year, I couldn’t help but be excited to start my first semester as a healthy person. How wonderful it would be to do college without debilitating neurological symptoms!
As I’ve said in previous posts, I never know how ill and out-of-it I’ve been until I get better. While I’ve always known when there was something “off” about me, I’ve not always been aware of the severity of it at the time—by definition, this is partly what made me “out-of-it.” The more I’ve recovered, the more of myself I’ve realized I’d lost to PANS.
This week, I’ll be starting my third year of college. While this may not seem like a big deal, to me, it feels like a miracle, considering how sick I was just a couple months ago.
I’ve been doing very well ever since my tonsillectomy. However, it’s one thing to be well while resting at home and taking it easy; it’s another to stay well while keeping up with academics and everything else that goes along with college. My remaining symptoms could interfere tremendously with school work: difficulty concentrating, reading comprehension issues, task inflexibility, and some other executive function problems. How can anyone do college with these symptoms?
Last week, I celebrated the one-year mark since my first IVIG. It’s hard to believe it’s already been a year, yet my recovery has seemed to go so much slower than I thought it would.
There are many things that no one ever told me before my first IVIG. I was warned about the fatigue and nausea and headaches afterward and the post-IVIG flare that would come in a few weeks. I was even warned it could take a year before all my symptoms went away, but I was never told what that year might be like.
“You’re better.”
Those are two words I never thought I’d hear from my doctor. But this week, I finally did.
As my mom and I made the trip to my doctor’s office this week, I couldn’t help but feel that things were different this time—and most of all, that I was different. I was more present. I was more aware. I was bright-eyed again. I was finally myself.
This time, unlike my last visit in May, I opened the office doors myself, grabbing the handles without flinching. I pushed the elevator buttons. I sat in the waiting room chairs without thinking about Lysoling myself when I got home. I realized that contamination OCD was finally letting me go.
“Let’s climb up over here,” I told my hiking partner, my feet digging into the mud of the riverbank. “This looks like the easiest—aah!” I fell through a heap of brush and sticks that I’d mistakenly trusted for my next step. I caught myself between a log and the dirt, banging up my knee and back on the way down and scraping my arm on the twigs.
“Are you okay?” my friend yelled from the bottom.
Ever since my tonsillectomy, I’ve noticed my OCD dying down significantly. I’ve found myself touching cabinet knobs in the kitchen that I haven’t been able to touch in over a year. I’m not checking my room for people trying to hurt me. I’m not washing my hands all the time.
I’ve been in CBT all summer, but the improvement I’ve seen seemed to happen much more suddenly and with much less effort than what I normally get from using therapy techniques alone. It was as if maybe, I had less brain inflammation, because I no longer had an infection in my tonsils.
When I first found out that I needed a tonsillectomy, I made three appointments with three different doctors at two hospitals. While this may sound excessive, based on past experiences, I knew the first doctor or two might refuse to do the surgery as soon as I mentioned PANDAS, especially since my tonsils looked healthy on the outside.
Indeed, when my records were sent to the first doctor, my appointment was cancelled within two hours and my case passed to a different doctor in the practice.
