PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Lately, I’ve been having a harder and harder time with cognitive problems. I make stupid mistakes in school now that I’d never make in the past. I say the wrong words without knowing it. I mix up left and right as if I were six years old. I’m very forgetful. I do a lot of small but silly things everyday—little things that anyone might do once in a while but the fact that I do them so frequently makes me feel as if I’m losing my mind.

I can manage as long as I make a plan or if everything goes exactly the way I expect, but the moment something comes up that doesn’t fit into my notions, I’m thrown for a loop and don’t know how to proceed.

The other day, I was filling up my car at the gas station, and after scanning my credit card, the pump told me to go pay inside. I didn’t understand. I had no idea what to do, but I did go inside to the cashier.

“Hey, my pump isn’t accepting my credit card and told me to come inside.”

“What pump are you on?”

“Umm… I have no idea… Let’s see… Well—hey, can’t you just fix it in here maybe? And then I can go pay outside?”

I was stuck on the idea that I always pay outside at the pump and couldn’t wrap my mind around paying inside—even though I used to always pre-pay at the cashier when I lived in another town.

“I don’t know what pump you’re on.”

“Okay…” I looked out the window. “I think I’m at number three. Could you please reset it from here so I can go pay for it?  How is this supposed to work?”

At this point, the cashier was slightly amused that I was so confused by the idea of paying inside. She tried to explain that I could do the same thing inside, but in the end, I still don’t understand what happened. I gave up on understanding and just handed her my school ID to pay for the gas–and then everyone in line really started looking at me like I was crazy.

I quickly pulled out my credit card instead and apparently paid, because I eventually got some gas in my tank. But the whole incident made me feel like a total idiot and like someone could’ve taken advantage of me.

The worst part of my cognitive issues is the fact that, by definition, I’m not always aware of when I’m struggling. I always have this sense that something is “off” about me, but I can rarely point out to you what’s wrong.   How can I trust myself at all like this?

At the same time, I’m functioning at a very high level and have no problems doing certain complicated tasks. Still, I know my mind isn’t what it used to be, and it’s frustrating and heartbreaking to be aware of this and to not know what I’m doing wrong.

Knowing that I’m not 100% mentally means I’m only losing my mind halfway…  Sometimes, I wish I’d go ahead and lose my mind completely so I wouldn’t feel the grief of knowing I was losing it.

But don’t you see? I’m not crazy. I’m not stupid. I’m just living with brain inflammation that’s temporarily masking who I am and what I’m capable of. Someday, when I’ve been cured, I know that I’ll get everything back, and people around me will finally see what I still see in myself somewhere—the same intelligent and rational person I’ve always been.

Comments on: "Losing My Mind… Halfway" (9)

  1. […] in the middle of answering a question once. I’d hoped she’d forgotten all about me and how “crazy” I was back then, but now I felt sure that she was going to ask what was wrong with me. How could I even begin to […]

    Like

  2. […] I’ve had in the last ten years, I’ve not only dealt with crippling OCD, anxiety, depression, cognitive problems, and movement disorders, but I’ve lost my very self; I’ve felt and acted like a different […]

    Like

  3. […] in a narcolepsy misdiagnosis (hence my being the “Dreaming” Panda). Sophomore year, I was often half-crazy, because I had terrible PANS flares every week or two, and in between them, I was barely living. […]

    Like

  4. […] think straight. (At least I know I’m not completely “here” still—it’s when I’m unaware of this that I’m truly in a bad […]

    Like

  5. […] instructions. However, when I do any of those things, I’m immediately taken back to a time when I did them all the time and every day—a time when I had no business even living independently, let alone attempting college. I get more […]

    Like

  6. […] of facing OCD all alone, too scared to ask for help. I can’t forget the daily despair of knowing I was losing more and more of myself with every day that went by last spring. I can’t erase the terrifying hours of descending into […]

    Like

  7. […] present. Over the last year, I’ve let my parents make many decisions for me, because I’ve known I couldn’t trust my own judgement. In many ways, I feel like a young […]

    Like

  8. So sorry you are feeling this way.,….but you are right. You will be back at 100%……….hopefully soon!

    Like

Share your thoughts. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: