The Push and Pull of Lyme Disease

I didn’t want to write about this, not because I wanted to spend this space writing about all the good happening in my life—the email I received letting me know about The Last Letter’s Honorable Mention for a reputable writing award, the Lyme conference I attended where I got to see old friends and connect with new ones—but because I didn’t think anything like this would ever happen again. I thought I’d put the health scares behind me. I thought since I was on such an upswing that now it was all about managing my symptoms, adhering to the limitations, resting when I needed to rest and pushing when I knew I could push.

But this… I didn’t think I’d experience this hell again, and now I’m dealing with so many emotions that I don’t even know where to start.

OK. Deep breaths. Let’s go back to the beginning…

Last week, after starting a new herbal protocol for my Lyme disease and co-infections, I had a few days of a fever spike that left me feeling miserable and drained. For comparison purposes, my base body temperature is usually around 96 or 97 degrees—typical for Lyme disease patients. Anything above that has me feeling flushed and a little bit out of sorts. In this instance, I had a high temperature of 100.8, which kept me in bed for a few days. This was coming on the back of a few weeks of recovery after my trip to New York City and a busy September, so I thought maybe I had just exhausted myself and my body was now reaping those consequences.

Over the course of the week, I gradually began to feel better again, though I still had a lingering (albeit lowered) fever, some fatigue, and a ton of pain. It wasn’t anything I wasn’t already used to. I’d gotten through nearly six years (including one very rough relapse) of Lyme disease treatment, after all—fatigue and pain have always been par for the course. But this… This I haven’t experienced since before I was diagnosed. Saturday was the PA Lyme Resource Network Lyme Disease Symposium—a conference about forty minutes away that I was looking forward to attending to learn more about Lyme disease and support my friends. I wasn’t feeling great, but I was feeling well enough to drive myself there and was so happy to be among people who understand me, who know my heart and this illness both. I can’t explain how important that is to me. Maybe you’ll understand how important this is shortly… I was thrilled to see my friends and connect with familiar faces again. I’ll write more about this conference later, but it was a great day and I was thankful I was feeling well enough to attend. The event lasted until five, but I started feeling flushed again around two and knew I wouldn’t be able to last. So I said my goodbyes and at three o’clock in the afternoon, I headed home. I slept for two and a half hours when I got home—one of the longest naps I’ve needed to take in a while. That night, I went out to a late dinner with two of my best friends, one of whom was in town visiting with her boyfriend. We ate a great meal, told stories, and laughed until our stomachs hurt. Then my friend and her boyfriend came back to the house where we hung out and laughed some more. It was a great night—which is what made the next day so surprising and so difficult.

I woke up Sunday morning feeling a little funny, but I chalked it up to just being tired and went about my morning routine of taking care of the dogs before heading back to sleep for a while. But then, as the morning lingered on, I found myself growing increasingly worse. I was supposed to meet my friend and her boyfriend again, but I sent them a quick text letting them know I wasn’t feeling so great but that I would try to catch up with them later.

I got dressed. I did the dishes. I did a load of laundry. But then the pain I was feeling in my abdomen began to grow sharper, and the palpitations in my heart began to grow faster, and I felt the flush rising in my body. I was growing lightheaded—woozy, like the room was slightly off-balance and so was I. My brain felt heavy—not from brain fog, but like a veil was being lowered that was causing me to feel… I don’t know how to explain it. I live with brain fog, but this was different. This felt like the world was slowing down, like nothing outside of myself was real, and it was taking all of my effort just to move, like I was wading through quicksand. I don’t remember much after this. Everything is a bit of a blur. I remember sitting down in the kitchen. I remember calling my parents and telling my dad I wasn’t feeling well and him offering to come and get me. I remember hearing my friend coming in and out of the house and me not wanting him to see me so sick and vulnerable. I remember being terrified because I’ve felt this way before—right before I was diagnosed and treated, when my organs were shutting down and I was dying because I couldn’t walk, could barely talk, when I felt like I was trapped in my own brain and my mind was screaming at me to wake up, but my body wouldn’t cooperate, like the connection between my brain and my body was broken. I’m still shaking as I write this even a few days later. Nearly six years have passed since I first was diagnosed and began treatment, and I thought the worst of it was behind me. I thought episodes like this were behind me. Even as bad as the relapse was two years ago, with the overwhelming fatigue and pain that kept me bedridden, it wasn’t like this. I never thought I would ever experience something like this again. But here we are, and I don’t know what to do with all of the fear, all of the pain, all of the emotions that seem to be flooding back to the surface again. “Wake up!” I remember screaming to myself. “Wake up, Susan, wake up.”

In my mind, I could imagine myself putting on my shoes, but I couldn’t even lift my foot. In my mind, I could imagine myself walking to the car, but my dad told me later that he and my friend had to help me, that I couldn’t do much more than shuffle my feet because I couldn’t get my body to lift my legs. In my mind, I could imagine myself doing cartwheels and running, but when we were waiting to be seen in the Emergency Room, my mom had to help me go to the bathroom because at that point, I could barely move. “What’s seems to be the problem,” the doctors and nurses all asked, and I didn’t know how to tell them because it felt like every organ in my body was failing, and how could they understand that when they don’t even believe this disease exists?

I tried explaining that I have Lyme disease, Babesia, and Bartonella—tried to explain that I felt this way once before—before I was diagnosed, when I was literally dying before I saved my own life, and did I have to save my life again? Please tell me I don’t have to save my own life again!—but the doctor offered a metaphorical shrug of his shoulders and said his beliefs didn’t matter, that it was only his job to rule out the bad stuff. The nurse mentioned that she had Lyme disease—that she’d never felt so tired in her life—but that a few weeks of doxycycline cured her. I exchanged glances with my parents. I didn’t have it in me to say anything. I didn’t want to be there, didn’t want to be here anymore. I felt like I was dying again and I didn’t know if I had the strength to fight anymore—not these doctors, not this illness, not this life.

Tears spilled out of my eyes from fear, from the trauma of being back in a hospital surrounded by people who will never understand…

From defeat.

I just wanted to go home.

And so, with me worried about my brain misfiring, and my mom worried about my heart feeling like it was being squeezed and racing too fast, and the doctor concerned with my abdominal pain, they took vials of blood and an EKG and x-ray, and a CT scan.

Except for an elevated inflammation marker, all of the tests came back clear.

This is the push and pull of Lyme disease: it does its best to try to kill you but then it keeps you half-alive, never granting you that peace.

Sitting in the waiting room for two hours, barely able to lift my head, I wanted that peace. I prayed for it. And I don’t know what kind of person that makes me because I would never want to put my family in that pain, and I was acutely aware of the helplessness my parents felt, but I was so lost in my own fear and my own physical and emotional pain that I didn’t know how to wish for anything else.

There are breaking points in life—every single person has them. I’ve reached mine time and time again and have always managed to claw my way back, but I’m so tired now. I’m tired and defeated and feel like this experience has snuffed out a light inside of me, and I don’t know how to reignite that fire when the embers themselves feel so dim. But isn’t this how life with Lyme always goes?

By the time I was discharged to go home hours later, after an IV of pain medicine and saline, the pain in my abdomen had lessened, my heart still felt like it was being squeeze but the palpitations had quieted, and my brain began to clear. I could move again without forcing myself to think about every action, like my motor skills were finally working.

I felt like I was waking up inside of myself again.

My parents took me home, fed me some soup, and put me to bed. I’ve been sleeping on and off for the past few days, and although I’m feeling better physically, the psychological effects are lingering within me. My specialist believes it was a massive die-off/herx reaction due to the new medicine which taxed my system and caused everything to become inflamed. So I’m back on my old protocol and hopeful that, along with some time and patience, will soon see me on the road to recovery again. But this experience has also left its mark. And I don’t know how to reconcile all of the emotions that have been brought back to the surface—all the emotions that I thought had been resolved. My friend Briana was the first friend I knew with Lyme disease. Back when I was first diagnosed, a few months into treatment, we were introduced by my doctor and spent that awful summer sending texts filled with messages of comfort and understanding back and forth between us. She helped me through it then. She’s been helping me through this now.

Because I texted her in tears the next day explaining how I was shaking when I first entered the hospital, that I felt like I was back there—there again through all the visits to the ER when my body was failing me and everyone kept telling me I was fine when I was dying. I felt so alone back then. I felt alone again on Sunday. I know I’m not alone now. Because there is a beautiful community of people who know exactly what I’m going through—who have been where you are with every health scare, who know what it’s like to be consumed by mistrust and a sense of betrayal by the medical community, who know what it means when you tell them you feel tired—how that word lies heavy in the soul, a sense of defeat within you that you can’t verbalize and so you say it simply and pray that someone understands your meaning. Someone understands my meaning. That’s what’s different this time—that’s what I have now that I didn’t have back then. That’s how I know that as hard of a time as I’m having now, I’ll overcome this, too. Because I have my family, with their unconditional love and constant support. I have my friends, who make sure I’m taken care of, that my fears are heard and not just swept away. And I have this Lyme community, all of you who “get it,” who make sure I know I’m not alone as I make my way back through this. And I will get through this. My light might be so dim now, glowing only by the embers, but I’m a goddamn phoenix. I’ll rise back up again.