Why I’m Doing Better Than I Think

These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.

I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy.

But those days seeing friends are the good ones.

I tend to forget how I couldn’t use my hand on Tuesday because of a dagger-like pain ripping through the joints. I forget the five-day migraine, when every step rattled my brain and radiated waves of nausea. I forget my mind is so much slower than it used to be. I forget that, last weekend, I ran half a mile, and then I spent the entire week in bed far more exhausted than after I ran my first half-marathon three years ago.

It’s not that I’m trying to lie to anyone—it’s because I’ve been sick for so long that my idea of “doing fantastically” is nothing like a healthy person’s. To me, I truly am doing well.

Compared to most 23-year-olds, I function somewhere between 50-75% right now. But this is a far cry from eight months ago, when my immune system went rogue and attacked my own brain in what I now call, “The Big Relapse.”

Back then, that autoimmune assault put me into a constant slow-motion panic. I was trapped inside my head and unable to process the world around me. I went to every class, but I barely caught a single word of each lecture. No matter how hard I tried, this former straight-A student gave nonsensical answers on every assignment.

Oh, and what my loss of cognitive skills, bone-crushing depression, and involuntary movements didn’t ruin, my eating disorder did. I spent the whole semester alternating between starving myself and binging, wondering every day when my body would give out.

But today? It’s taken six months since autoimmune treatment, sixteen months of Lyme treatment, two months in intensive outpatient therapy for my eating disorder, but…

I see the light at the end of this long, dark tunnel.

I wasn’t well enough to get a job after graduation in December, but in the last few weeks, I’ve started working on my own projects. My lingering depression and anxiety, coupled with the eating disorder, had crowded out any interest I had in my work until recently. I couldn’t even think about the dreams I once had, let alone have the energy to be productive. Now, I’m working a couple hours per day and enjoying what I’m doing.

Nevertheless, it’s painfully obvious that my brain is still healing. I can’t work for more than half an hour at a time, and there are days when I lose focus every couple of minutes. Sometimes, tears of frustration well up when I remember how much easier these tasks used to be, and I wonder how much easier it would be without my cognitive disabilities.

And that’s when I realize: I’m doing really, really well.

With other kinds of autoimmune encephalitis, such as Anti-NMDA Receptor Encephalitis, people can take a year or more to recover—and some are sadly left with permanent brain injuries. Why should I be surprised that I’m not 100% six months later, either? Healing a brain is a long and complicated process, and my neurologist said my case of PANS is a form of autoimmune encephalitis, after all.

Moreover, if I’ve had Lyme disease for eleven years, as my Lyme specialist suggests, why am I surprised that I’m not recovered from that, too?  It takes many people years to get the infections under control.

No, I’m not where I want to be, but considering where I was a few months ago, I’ve come a long, long way.

It’s amazing that I’m even thinking about my future and my career, rather than just how I’ll get through the day. When I step back and remember where I came from, I should be impressed with even the humble amount of work I’ve done in the last few weeks.

Maybe to some people, I’m not doing well. But to me, given the Lyme and PANS monsters I battle, I know the truth: I’m doing a fantastic job living my life as fully I can.

15 thoughts on “Why I’m Doing Better Than I Think

  1. Hi again, DP! I have to improve my navigation of WordPress, but am pretty sure you will find this! I wanted to send you a reference to someone whose background and career (especially the combination!) are amazingly motivating. If you haven’t looked her up, please explore the author, Laura Hillenbrand, and especially her article from “The New Yorker”: “A Sudden Illness” (2004). At that time, her bio immediately meant a lot to me…and now, even more, and relating to your experiences too. Another hero.

    1. Thank you for sharing this! Yes, Laura Hillenbrand is one of my favorite authors and a personal hero, too, because of all she has overcome. I actually just finished reading Unbroken and was amazed. Her article is fantastic, too. It’s great seeing other people with chronic illness being so incredibly successful… I’m talking a little about my own book in tomorrow morning’s post. 🙂

  2. I’m late in replying to this entry, but only recently heard this related, quotable quote.

    Standing in line at the grocery store a handful of weeks ago, the customer in front of me was asked the usual, “How’re you doing today?” But he answered the unusual:
    “I’m doing fantastic, but it’ll get better.”

    I laughed out loud, and knew I’d be quoting him for ages.

    To all of you courageous conquerors…
    You are DOING FANTASTIC, but it’ll GET BETTER!

  3. I’m late in replying to this entry, but only recently heard this related, quotable quote.

    Standing in line at the grocery store a handful of weeks ago, the customer in front of me was asked the usual, “How’re you doing today?” But he answered the unusual “I’m doing fantastic, but it’ll get better.”

    I laughed out loud, and knew I’d be quoting him for ages.

    To all of you courageous conquerors…you are DOING FANTASTIC, but it’ll GET BETTER!

  4. Wow your blog today was so inspiring and hopeful. I am happy to hear the progress and healing you are having. My son Carson is also doing fantastic, not 100% and not completely happy and content but since his last PANS flare in Dec 2016 he has been getting better and healing his brain one day at a time since then. He has been away at school since Sept and will be coming home soon for the summer. We have seen him several times over the last many months and each time he is better and better. The remnants of his PANS that remain are motor tics and OCD. Nothing like it was before. I pray your healing journey continues and that you have a wonderful summer. And congrats on Grad School!!

    1. Hi Alisa, I’m so glad to hear that Carson is doing fantastic!! That’s excellent news. It really is such a long and slow process, but that’s great that he has been able to do school. I have to say that the tics and OCD are usually the very last things to go for me, and I think that’s common. Hopefully they do keep improving, too. Thanks for the good wishes!

  5. You are so right, my friend! And it truly is a miracle that you’ve only been doing Lyme treatments for a year-and-a-half. I have never heard of that before, after so long with untreated Lyme. I’m very surprised the Lyme is even as treatable as it is after 11 years! As you know, you are doing very well considering where you’ve been! Comparison ruins contentment for me, so I try to do what you’re doing!

    1. Yes, it definitely is a pleasant surprise that Lyme is this treatable after (possibly) being untreated for eleven years. And I love that saying, because it’s so true: “Comparison ruins contentment.” 🙂

  6. there’s no greater pain than being aware of losing your brain functions…I am very far from being as functional as you are, but after 10 months of therapy for Lyme, I’m starting to recover bits of my brain. It accelerated after I strated 2 g per day of Lion’s Mane and Gotu kola, but I have hopes of regaining my absteact thinking abilities and have a job in a few years.
    You’re right, it takes years to heal years of untreated diseases. Most important: never giving up. The nerves can regenerate with the right combination of rest and plants.
    Keep being strong and awesome.☘️☘️☘️

    1. I’m glad you’re getting better as well. Healing never seems to come fast enough, but at least we’re on the right track. I’ll have to look into those plants. Thanks for mentioning them. You keep being strong and awesome, too!

  7. Hugs, <3 – you are a wonderful brave girl! I wish you all the best now and forever. 🙂

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