PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

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When people ask how I’m doing these days, I never know how to answer, so I just say to everyone:

“I’m tired.”

But this isn’t a tired that can be relieved with a good night’s sleep, a break from school, or a hot cup of coffee—this is a tired that penetrates my very soul. It’s a tired that makes simple tasks take untold mental effort. It’s a tired that makes me uninterested in anything more than surviving each hour ahead. It’s a tired that makes me wish people would stop asking about my post-college plans, because I don’t even know how I’ll get through today.  This is a tired that’s sucking the very life out of me.

It’s now been about two months since I began Lyme treatment, and I’ve been herxing every two weeks; just as I recover from one reaction, I start having another a few days later. Each herx not only makes me physically tired, but the roller-coaster of symptoms leaves me mentally exhausted as well. With the last two herxes, I’ve ended up worse than before once they’re over.

Now, after three herx reactions, I feel like my life is slipping away between my fingers, and there’s nothing I can do to stop it. I neither recognize myself nor the nightmare unfolding before my eyes.

Lately, I’ve felt totally out-of-control; one moment, I’m almost okay, and the next, I’m repeatedly telling my mom that I want to die. One moment, I’m able to struggle through homework (albeit slowly and with great difficulty), and the next, it’s as if someone has “wiped my brain;” I suddenly become confused, disoriented, and unable to say little more than choppy words and gibberish.

To make matters worse, my eating disorder is so severe now that my psychiatrist thinks I should start intensive outpatient therapy. My mom has moved in with me, because I can no longer take care of myself. I usually can’t go to work, and I’ve had to drop some classes that I was really enjoying. But truly the worst of all of this is that I’m so depressed that I’m sometimes mad at God in the mornings simply because He let me wake up again.

I’m tired of watching myself fade away. I’m tired of getting better only to get worse later. I’m tired of PANS. I’m tired of Lyme. I’m tired of endless treatments and trips to the doctor. I’m tired of watching life go by while I stand still. Sometimes, I’m simply tired of living at all. How much longer can I keep doing this?

But you know what? The runner in me still knows that being tired doesn’t mean you have to give up. No, “tired” is a challenge and a dare to keep moving forward despite your body screaming at you to quit. Some of my best runs have been those when I was sure I couldn’t take another stride, and yet I went on for several more miles, running faster than I thought was possible.

I may be tired, but with God, I’m stronger than I’d ever dare to believe. I don’t know how many more miles I have to run like this, but one thing’s for sure: I will keep pushing forward, even if it means crawling across the finish line of this disease, tired, exhausted and gasping for breath.

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Comments on: "The True Meaning of “Tired”" (10)

  1. Keep going brave girl! You are an inspiration to us! ❤

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  2. Praying for you!

    “He giveth power to the faint; and to them that have no might he increaseth strength.” -Isaiah 40:29

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  3. You go girl! You can do all those through God who strengthens you!

    “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” -Corinthians 4:16-18

    Your honesty in your blogging has helped so many people! God bless you!

    And I totally understand the wiped mind. The other day I was sitting with my counselor and she asked me a question, and the world felt like it was spinning. I lost my thoughts. Words, phrases, sentences, and events swirled around me. That used to happen multiple times a day.

    The disoriented goes along with cognitive issues from Lyme and PANS. 😉 You’ll get better! One day!

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    • Thank you so much for all the encouraging words, PANSy. It helps to know I’m not alone in all of these challenging symptoms and that my writing is helping other people. I’m glad you’re not having the wiped mind so much anymore. 🙂

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  4. I so appreciate your honestly and am so sorry things are the way they are right now. You have every right to feel the way you do, but in true Dreaming Panda fashion, you are not giving up. I don’t think you’ll ever know how many people you are inspiring. I will keep you in my thoughts and prayers. I believeyou will more than crawl past that finish line. At some point, hopefully in the not so distant future, you will sprint!

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  5. You keep going Dreaming Panda, you can do this even if you don’t really want to. The best things in life are worth waiting for. When you finally get through all of this, I’m certain God will have a great life for you to live. You’re doing a superb job!

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    • Thank you, Melanie! I’m trying to trust that God is going to make something good come out of all of this someday, no matter how bad it may get. Doing much better now compared to when I wrote this post!

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