PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Binge Eating’

I Am Not an Illness

Sometimes, I don’t know who I am anymore

It was 5:00 in the morning, the day’s homework wasn’t finished, and a test that I would surely fail loomed over me. My kitchen counter-top was covered in crumbs and empty wrappers, and I’d been spinning on my stationary bike for the last three hours. My laptop was opened to my class notes, but I had a major food hangover from the 4000 calories I’d consumed just hours before. Studying was near impossible.

As I realized I’d spent the whole night exercising and making calorie calculations rather than actually doing anything productive, I asked myself… What has become of my life?

At one point, I stopped biking and took my computer to the living room for a break for my exhausted body and mind. When I opened my Instagram, there, staring back at me, was a picture from a couple days before, in which I was beaming and glowing in a crisp dress following a successful presentation I’d given at school.

Seeing this happy person cut straight to my heart. How could I possibly have transformed into a binging monster less than 48 hours later? Why couldn’t I stop eating and just hold myself together? If only people knew who I really was—the girl that has Lyme disease as well as an eating disorder that’s spiraling farther and farther out of control—the younger students would no longer look up to me, and my professors would lose their respect for all I’d done.

But then, it hit me: that pretty, intelligent woman plastered to my profile page… That was the real me—not the girl who stuffs her face with junkiest binge food she can find into the wee hours of the morning, despite already feeling like her stomach might explode. Nor am I the girl that screams about wanting to die because of the psychological torment that an inflamed brain brings about.

Over the last ten years of PANS, I’ve so often felt like a person I don’t recognize. Sometimes, I’ve forgotten who I am, because it seems like I’m nothing more than an illness that’s taken over my mind and life. But I am not Lyme disease or PANS or an eating disorder… I am me.

In my worst times, I do my best to not think about who the real me might be, and I try to forget what life is like when I’m well—it seems too painful to realize everything that my illness can rob when it takes control. Yet this week, I’ve started to think that maybe, just maybe, it’s important to hold onto the memories of the better times, because they’re reminders that I am more than an illness or a set of debilitating psychiatric problems.

I don’t believe that PANS can ruin who we are—it can only obscure it. Beneath the brain inflammation and the torturous symptoms, there is still a soul and a personality that is waiting to resurface once healing comes. I may have PANS, but PANS doesn’t have me.

As I closed my computer, gathered up my notes, and packed up my backpack later that morning, for the first time in a long time, I felt hope that there will be a time when I can feel like the person in my Instagram photo every day—the woman that everyone else sees from the outside. Someday, PANS will hide me no more.

Quietly Out of Control

You can binge eat on a paleo diet? Heaven help me…

When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.

Right now, it feels as though all of my thoughts are swarming around me, and I try to catch them, but they manage to slip out of my hands before I can put them back into the cage of my head. Just as I’ve grabbed one thought, as soon as I try to reach for another, the first one slips out. I forget things quickly. I don’t pay attention. I get nothing done. I end up feeling frantic and restless, yet I can’t actually do anything productive with all of this unfocused energy.

But what makes me feel the most out-of-control is that there’s a puppeteer in my head that makes me do things I don’t really want to do. It makes me read pointless articles on the Internet when I want to be reading my textbooks. It makes me sit on the floor and stare at nothing instead of getting into bed when I’m ready to sleep. It makes me bike all the way across town to areas I don’t know when I only need to bike to the college library. And it’s impossible to extricate myself from the puppeteer’s control.

Lately, it has me doing something even more disturbing: binge eating.

I think about food a lot, and often, I start eating when I’m not even hungry. And then I can’t stop. I just stand in the kitchen eating and eating, knowing exactly what’s going on, but feeling powerless to do anything else. When I’m finally done, I feel bad about it, and I’m tormented with the idea that I’m going to get fat. I think about fasting to make up for it (but I never actually do it). I think about how long I will have to work out to burn it off. I “check myself” in the mirror every time I walk by, which I know is ridiculous, but it sometimes makes me feel better for a moment.

So far, I’m still below the weight I was before I had an intense period of restricted eating in the summer of 2014. I tell myself that as long as I keep running and working out, it will be fine. But I know I’m not fine…

I’m not heading in a good direction.  I’m beyond frustrated with my out-of-control mind, and I’m frightened by my out-of-control actions.

In desperation during midterms the other week, I restarted taking Provigil (with my doctor’s approval) to maybe have something that remotely resembled an ability to focus and get some work done. For a week, it worked beautifully, but now, I’m feeling unfocused and out-of-control all over again. Even worse, my depression has come back despite temporarily stopping my Prednisone taper—which my doctor suspected was causing it a couple weeks ago.

I’m beginning to question everything all over again… Am I really in remission? Am I getting worse? Am I feeling this way because my classmate just had Strep? Could this be related to the Prednisone taper? Is any of it part of the PTSD?

For now, I have no answers. I’m going back to the psychiatrist this week, though, so maybe he can help get me through this rough patch…

I’m better than I was last semester or a year ago. I do have good days where I have concentration and control. I’ve even had quite a few days where I’m not depressed, either. But one thing is certain: I’m still fighting PANS. And whatever it takes, I have to find a way to put my thoughts back into my head and free myself from the puppeteer.

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