The Part of PANS/Encephalitis Recovery We Don’t Talk About

For the last eleven years of being sick, time has been my enemy. 

The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing.  Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.

Continue reading “The Part of PANS/Encephalitis Recovery We Don’t Talk About”

10 Ways to Feel Less Hopeless When Chronically Ill

“I just can’t keep going.”

“I feel completely hopeless.” 

“How can anyone live like this?”

These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.

My conditions themselves, PANS/PANDAS and Lyme, affect brain chemistry in a way that creates an all-consuming despair too dark for words.

And if the hopelessness weren’t bad enough as a symptom… Doctors give up on you. Family members don’t believe you. Friends stop talking to you. Even the experts aren’t completely sure how to help.

Moving through life with a chronic illness isn’t easy, but I’ve developed strategies that I hope can help any of you feeling hopeless right now…

NOTE: If you’re feeling suicidal, please call your doctor, as this can be a sign of brain inflammation in PANS or Lyme. If you’re in crisis, call the National Suicide Prevention Lifeline at 1-800-273-8255.

1) I keep living as much as I can.

Keeping my life as consistent as possible always helps when my disease uproots my mind in a flare. That’s why I stayed in school even when I was horribly ill—even if all I could do was show up to class without understanding a single word. If my illness was going to make me miserable no matter what, I figured I might as well be miserable but working towards my dreams.

However, it’s a fine line between pushing yourself to do too much and trying to maintain a sense of normalcy. The line is different for everyone.

2) I focus on what I can do—not on what I can’t.

My diseases can be incapacitating. Even in my better times, I have to do things slower or in a different way than everyone else. Nevertheless, instead of focusing on my disadvantages, I focus on everything I’ve done despite my difficulties.

I can’t have a job or live on my own right now, but I think I run a pretty cool blog. 🙂 And hey, I did graduate from college in December, so that counts for something…

You’re up against serious challenges if you have a chronic illness. Try not to beat yourself up for what you can’t accomplish at the moment—getting better and walking this journey is some of the hardest work anyone could do.

3) I think about how fortunate I am.

I know I’m lucky to have had real treatment….

As difficult as life can be, I try to remember that so many people with my conditions never get a diagnosis—let alone proper treatment. When I start feeling sorry for myself, I think about how much worse I would’ve been without any treatment.

Therefore, I try to view my life as a second chance that so many others with my condition don’t get. And I think about making the most of it…

4) I give back.

I never intended to be writing this blog after four years, but I’ve continued because it gives me a sense of purpose when people say I’ve helped them. By giving back to others, I find meaning in my life even when I’m otherwise miserable.

You don’t have to start a blog about your illness, but you can feel better by finding even a small way to make someone else’s day just a little better. You can send your grandma a card. You can pick up a piece of litter in the park. You can text a meme to another friend who’s having a bad day. Shoot, you’ll feel better if you pet your cat and hear her purr with contentment.

5) I distract myself.

Laughter is the best distraction of all, but do anything safe that will take your mind off the hopelessness. There are less options when you have severe cognitive problems and severe physical symptoms that leave you housebound, but there’s always something…

If I can’t read a book or watch a movie or talk to a friend, to be honest, I usually spend all day on Twitter accounts and mindless iPhone games. (Ironically, my favorite iPhone game for these circumstances is called Panda Pop.) It’s easy to get lost in these activities, and when my symptoms are at their worst, the best thing is to make the hours go by faster.

6) I get out of the house.

[Please protect yourself from ticks if you go in these woods!]
Some people with PANS are terrified of leaving their home, but when I’m able, I feel better if I take a walk around the neighborhood. Sometimes I start associating being indoors with my hopeless thinking, so going on a walk or just sitting on the porch forces me to think of something else. Unless you have allergies, I believe the fresh air does anyone some good.

7) I spend time with others.

I feel less hopeless when I’m with a friend—especially if they can make me laugh. Humor is so important! Last semester, I told a few good friends about my relapse, and they’d sit with me through flares or encourage me to at least have lunch in the student union instead of alone at home. You’d be surprised how kind some people can be if you let them into your life just a little bit.

8) I find an outlet.

When possible, I redirect my energy to a hobby. Until I got too sick a few months ago, running was my go-to. I ran three times a week, and the races I trained for were often the only thing I looked forward to. It gave me another reason to not give up.

But for you, your outlet could be art. Or maybe baking makes you feel better. Maybe it’s playing an instrument. Maybe you love to code. Maybe writing is enjoyable. Or perhaps you get really excited about Bingo. It doesn’t really matter what the activity is, but it’s helpful to have something simple that lifts your spirits.

9) I try to think rationally.

Unfortunately, PANS and Lyme are notorious for crippling one’s ability to think clearly. However, I learned to accept that this was so and to look at unusual thoughts with suspicion. For example, I now know I get suicidal thoughts when my brain is inflamed, and I know they’re just a sign that I need more antibiotics or steroids—the thoughts aren’t based in reality.

When I start going down that rabbit hole of extreme despair, I’m now able to step back and realize it’s just a feeling—life isn’t as hopeless and pointless as my brain tells me it is. Like the saying goes: “Don’t believe everything you think.”

I credit this skill to Cognitive Behavioral Therapy, which I highly suggest to anyone willing to try it. And again, please reach out for help if you’re feeling suicidal or thinking of hurting yourself. There’s always hope.

10) I think about how far science is progressing.

We’re only at the very beginning of understanding many chronic diseases. Although it’s frustrating for those of us suffering right now, I find hope knowing how much research is happening. I truly believe that in my lifetime, PANS/autoimmune encephalitis and Lyme will become mainstream conditions that doctors know how to fix. To me, it’s only a matter of time until we all get better.

We just have to hang on until then.

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So to all of you readers wondering how you’ll get through another day, I hope you’ll find something in this post that will help you keep going. Know that you’re not the only one going through this. I promise it’s not hopeless, no matter how sure you are that it is. ❤

Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…

I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend.  I remember thinking, I can’t possibly be sick enough to have Lyme Disease.  What am I doing here?

Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”

I Did 8 Weeks of IV Steroids. Here’s What Happened…

This semester, I wasn’t at school until October… Though I’d never missed a single day of sitting in the classroom.

After returning home from my summer internship in August, where I’d felt almost 100%, I noticed symptoms creeping back in. At first, I waited it out to see if they would pass, but I kept getting worse and worse, slipping farther and farther into a tormented mind that I no longer recognized. Continue reading “I Did 8 Weeks of IV Steroids. Here’s What Happened…”

Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”

Why PANS Awareness Saves Lives

For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

Continue reading “Why PANS Awareness Saves Lives”