“Ups and downs are better than straight down.”
The other day, I found this cryptic message scrawled on a sticky note inside my desk. I had completely forgotten that this used to be one of my favorite sayings in the years when I was still fighting through the brain inflammation from PANS. But now, it’s taken on a whole other level of meaning with my new challenges…
I remember clearly the day I was diagnosed with PANS, and my neurologist said I needed IVIG treatment urgently. It would be an infusion of antibodies from thousands of human donors in an attempt to stop my own autoimmune antibodies from attacking my brain.
“Most people improve in three or four months, but it could be up to a year before you’re better,” my doctor warned me.
But when you’re brain is as inflamed as mine was, you can’t completely understand ideas like “getting better,” and even the concept of improvement seems abstract and amorphous. I had a sense that improvement would mean not having tics and other involuntary movements 24/7, and it would probably involve things like reading getting easier, as my reading comprehension had suffered tremendously. I also hoped the panic attacks and random shaking would stop, too, with whatever was meant by, “improvement.”
However, when it came to living in the hope of improvement day in and day out, there was no road map nor any concrete guesses as to how my recovery would unfold. And that’s part of what made it so darn hard.
In the first couple of weeks post-IVIG, I saw a slight reduction in involuntary movements because I was on the steroid Prednisone. I stopped having so much OCD about foods. The depression improved from complete and utter despair to a tolerable numbness and lack of mental energy. I had improved, but I was so, so far from being okay, much less being my “self” again.
And then came the dreaded post-IVIG flare: all the symptoms came rushing back, and new ones I’d never had appeared. Fortunately, my friend Prednisone bailed me out again.
After that initial improvement and then the recovery from the flare, it felt like all progress came to a halt. There was the occasional flare, but the overall trend seemed to be neither moving forward nor backward. I felt completely stuck in my recovery journey as I flailed my way through college, struggling tremendously with ongoing cognitive dysfunction and mood dysregulation.
But one day, I realized that I wasn’t having so many tics and involuntary movements anymore. I realized I had started looking forward to things. I realized I was having an easier time with school than I had been at the beginning of the semester.
And that’s when I realized I’d been improving all along!
Five and a half years and three PANS relapses later, you could say I know a thing or two about the agonizingly slow process of recovering from a neuroimmune illness. With every major relapse, the process of losing and regaining myself starts all over—this is my personal definition of a relapse as opposed to a simple flare-up. In a flare, even if it takes some minor intervention to overcome, when it passes, I go back to wherever my baseline was before. With a relapse, my life is completely upended, and it takes months to recover.
With every relapse, I go through the metamorphosis of brain inflammation and brain healing yet again. Every relapse affects me differently, but recovery is always the brutally slow pealing back the onion of symptoms, layer by layer until I get back to myself. It’s always 70% of improvement in 30% of the time, and that last 5% is so slow I’m not completely sure when it’s over—even now, two years after my last major episode.
I would have thought that I of all people would be able to grasp how recovery from my other neuroimmune illness, ME, would be, and yet I’ve just realized I’d fallen into the same fears as I had at the beginning of my recovery from PANS.
I’ve spent the last several months researching and experimenting with potential ME treatments on my own in the hopes of regaining function. Unlike PANS, there are no standard treatment protocols. Unlike PANS, people don’t typically recover all the way, especially after a few years of illness. So I’m a bit frantic to beat the odds since passing the two-year mark.
But last fall, I got one of the leading researchers to take me on as a patient, so I’ve been under her care for a few months. Sometimes, I’m extremely optimistic and not worried about the future at all, but other days, I want to punch a hole in the wall out of frustration because I feel like I’m not making progress. After all, I still can’t make it around the block without a debilitating symptom flare the next day.
But then I realized my folly: recovery has been happening all along. As with PANS, it’s so slow that I forget it’s happening at all.
When assessing how you’re doing, you can’t focus on the one symptom that hasn’t budged yet. You have to look at the big picture.
Yes, my exercise capacity is still extremely low, but how about focusing on the fact that I’ve not had the cognitive impairment symptoms consistently since the summer? How about focusing on no longer feeling like I have the flu all the time? How about focusing on being able to tolerate everyday sounds again? How about focusing on not having excruciating headaches multiple days per week? How about focusing on not being exhausted just from making my morning coffee? How about focusing on my resting heart rate finally getting down to the 80s? And how about focusing on the fact that I’m well enough to enjoy my at-home desk job that’s in my field?
I have a long way before I get to where I want to be with ME, but I have to remember that I am, in fact, on my way. It may not be in the timeframe I’d like, it may not look how I expect, and it will almost certainly be a lot of ups and downs. But the main thing is that I’m no longer trending down.