PANS + Lyme: Recovery and 8 Years of Misdiagnoses

I don’t know where I am or where I’m going in life anymore.

With my final semester of college on the horizon and an amazing summer internship behind me, it’s finally sinking in that it’s time to figure out what I’m doing with my life next. I’m pretty sure that anyone about to graduate from college is feeling anxious about transitioning into the “real world,” but for me, as someone recovering from PANS/Lyme, there’s a whole other layer of messiness.

Although a lot of my symptoms are minimal at this point, my depression is getting more and more out of control. It’s to the point where my psychiatrist is treating me as if I have Bipolar Disorder, though he won’t diagnose it since he thinks it might be caused by Lyme Disease. I have days where I feel like everything is wonderful, life is great, and I could do anything; I work very intensely for hours at a time and set impossible goals for myself, and when I tell people about it, they look at me like I’m nuts. Then, on other days, I sleep as long as possible, sit alone in my room all day, and can’t stop crying for no reason.

Most of the time, however, I don’t really feel anything. I’m not exactly unhappy, but nothing interests or excites me anymore. I somehow managed to do really well at my job this summer, but even though it was something I’ve dreamed about for half my life, and I was grateful to be there and did enjoy many aspects of it, so many days, all I wanted was to go home and do nothing.

Fundamentally, I’m a very driven, goal-oriented person, so this isn’t a matter of laziness. There’s still a part of me (the real me) that desperately wants to do what I thought I’ve wanted for years, but when it comes time to actually do anything, I’m miserable. To add insult to injury, I have everything in line to start a good career—the skills, the connections, the determination, and even a job interview—but some days, simply getting through the next hour feels impossible. So how will I ever do much of anything with my life? Sometimes I feel like it’s such a waste that I’m good at what I do, since I’m afraid I’ll never be able to have a career at all.

I’ve been asking myself if maybe I need to change careers and do something completely different, but when I really think into the matter, I realize that there’s nothing else that seems better. Even more confusing, when I have my manic/hypo-manic days, I find that my career dreams haven’t changed. But I also wonder if perhaps I’m just burned out—perhaps I need some time away from school and work, and then I’ll rekindle my passions.

However, there is still one thing that somewhat remotely interests me on almost any day, and that’s the idea of finally writing the PANS memoir I’ve contemplated for years—though it was difficult to even make myself write this post (hence my lack of updates for the past month). Some people have told me that it would be one of the most meaningful things I could do, so maybe they’re right. Maybe I’ll take a year off from everything and finally get the story out, and then I’ll know what to do after that.

But for now, as the start of the semester and the end of my time in college draws nearer, I have no idea what I’m doing in life anymore. Yet I do know this: I need to hurry up and get better, because eleven years of PANS, Lyme, and depression is long enough.

Comments on: "I Have No Idea What I’m Doing Anymore" (10)

  1. Maybe the break from studies will bring some change to your feelings. I hope you feel better though.

    Liked by 1 person

  2. Are you still treating Lyme? I’m in year 4 and I’ve made some really great progress this summer. But like you, I’ll be very energetic and then I’ll have a meltdown for no apparent reason. I’m convinced it’s the Lyme still messing with me but just in a new way. Someone mentioned inflammation above and that sounds like a possible cause for me at least. Are you seeing an LLMD?

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    • Yes, I am still treating Lyme–I have at least four more months until I switch to maintenance (I’m guessing probably even longer, though). My LLMD thinks the mood issues are still inflammation/neuro-Lyme. I don’t think any of my doctors believe it’s actual Bipolar Disorder, but some of the same drugs seem to be helping me somewhat. It’s reassuring to hear that you’re dealing with similar issues, but I’m really sorry you’re also going through all of this! I hope things get better for you soon!

      Liked by 1 person

      • Lyme is so crazy. I feel like some of my physical symptoms have definitely improved but I think it’s been messing with my moods and mental state as well. Sometimes I have anxiety and I never had that before. Also just feeling overwhelmed with like everything! I’m glad your doctor is on top of it.

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        • Ah, yes… I feel like I’m in the same boat: physical symptoms are improved, but the mental ones are still difficult. Sometimes I don’t know if my anxiety is a symptom or just a consequence of having to live with all of this. It’s definitely overwhelming! Let’s hope these mood issues start going away for both of us. 🙂

          Liked by 1 person

  3. You know, you might want to take a look from the eternal perspective. And the God perspective, too, instead of the occupational accomplishment perspective. God’s blessing people with this blog. What if the most meaningful and important thing you do isn’t for your occupation?

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  4. You have so much insight. I think the neuro-Lyme may still be causing chronic inflammation & messing with your psyche. I hope the doctors are effectively addressing this. Unfortunately, it may take time to significantly improve.
    You have accomplished so much while being so sick. You are so resilient. Patience & time are all there might be to ultimately heal completely.
    Continue treatment but you may want to seek out another opinion by a Lyme literate md through ILADS.
    Hang in there. Your future may be filled with so much promise & a life of peace and health.
    Best of luck with the memoir.

    Liked by 1 person

    • Thanks, Melanie. I think you’re right about the neuro-Lyme and inflammation. I still have at least four months of Lyme treatment before I switch to maintenance, so I’m still hoping this will all just blow over. I’m being treated by a LLMD, but I may get a second opinion when I go back to school. Thanks again for the encouragement!

      Liked by 1 person

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