Why I’m Better, Not Over It

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.

I want more than anything to just get on with my life, and in many ways, I have.  These days, I feel the most like myself that I’ve felt in two or three years. My good days are up to 98% symptom-free, and my bad ones are rarely below 90%.  Although my life is still affected by PANS, it isn’t controlled by it…

Yet the nightmares still come.

This week, I realized that although I’m mostly recovered physically, I’m not recovered emotionallyI’m still not over what this disease once did to me. And I’m not over the (very small) possibility that it could return someday.

Sometimes, I feel like I live my life waiting for the other shoe to drop. I’m always waiting for the next virus to send me back into a flare. I’m forever watching every little movement and thought, ready to fight against my next PANS assault…

My arm jerks a little bit, but I didn’t tell it to move. Was that a chorea movement? Or was that just a normal twitch? Am I going to flare?

I completely forget about a homework assignment until the last minute. Was that brain fog? Am I getting forgetful again?

I have no appetite one night and decide not to eat. Is this the return of an eating disorder?

I feel sad one day. Is this the start of depression?

When I keep myself busy during the day as I’ve been doing at college lately, I’m able to mostly stop thinking about potential symptoms.  But when the day is done, the nightmares often rush in: I have dreams of the future where I am doing worse and need more treatment; I have dreams where I see myself falling down whenever I try to walk; I see myself surrounded by confused doctors; I see myself getting IVIG. I wake up relieved for a moment that it’s just a dream, but then I realize that it isn’t—it really happened.

I wish I could only be grateful for my recovery and move on, but when my mind is stilled and the lights go out, I’m haunted by my past. I can’t undo the six-year torment 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 flares, knowing I was losing control over my body and mind.

The reality is that PANS was a traumatic experience. PANS essentially killed me, but I was incredibly fortunate to find a doctor who brought me back to life. Still, no IVIG or tonsillectomy or Prednisone burst can help me come to terms with the last nine years.  I need time and maybe some help in order to heal emotionally.

Indeed, I’ve been in and out of counseling for the last year, and I believe it’s helped me have the courage to keep moving forward as much as I have. I may need another year of it to fully heal. At some point, I will heal, but I will never get over it, because “dying” has changed the way I look at life, for better or for worse.

Someday, I will realize that I haven’t had a bad flare in years. I will realize that I’ve been living my life, and PANS hasn’t hindered it. Then, I will exhale, and PANS will only be a scar—but always an indelible mark on who I am.  I can’t “get over it,” but I can choose to keep living and fighting for all that I once lost.

9 thoughts on “Why I’m Better, Not Over It

  1. I’m so happy you are doing better physically and I hope so badly that you can feel better emotionally too. Your experience sounds so difficult but I’m glad you’re able to express yourself and work on it. Best of luck!

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  2. Everything you say makes total sense, and I’m glad you are getting some help with the emotional challenges created by your ordeal. My hunch is that you will get through this just as you’ve gotten through everything else……..spectacularly………..and someday down the road you might even see how your journey through PANDAS affected your life in positive ways….perhaps contributing to making you the strong, resilient, caring person you are?!

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