A Day in the Life of Someone With Lyme: When I’m Too Tired to 'Fake It' for You

My body is betraying me once again.

My muscles ache and spasm. Fingers and thumbs are disobedient, jumping and twitching to their own drum. I try to type, but random keys are struck. Frustration sets in as I spend more time deleting and correcting than typing and creating. This is a new symptom, and it is hard for a writer.

My head hurts. Not consistently. Off and on. Intense then dull. The same as most of my Lyme symptoms. Sometimes it’s painful just to walk. My ankle… well, my Achille’s tendon and my heel, specifically, shoot pain as acutely as walking on hot coals. No prescription pain medicine seems to alleviate it.

I’ve been in the emergency room three times this month. When the pain consumes me, I look at my husband, tears silently streaming, and say, “I’m drowning.” He knows it’s pain that chokes me. I cannot think. There is only pain, and it’s pulling me under.

Air hunger sets in. Walking up the stairs causes me to pause at the top to catch my breath. Any activity generates a tightness in my chest. An elephant sitting on me. My heart rate is temperamental, leaping to 160 then dropping to 45 just between standing and sitting.

I lie with my feet elevated often, which is good because the fatigue that has taken hold in the last few weeks is profound. On days it devours me, I sleep often. I nap during the day, unable to stay awake even for important moments. I am nudged to consciousness for dinner. I have to be prodded off the couch for bedtime. I sleep in the car, on the couch, in the chair. I feel like I could sleep nonstop for days and still wake feeling spent.

I seem to have two modes. I’m either in gut-wrenching pain and cannot sleep, or the pain is managed but I’m exhausted.

The weird symptoms begin to flare up. My scalp hurts to the point I can’t brush my hair. The vision in my right eye is blurry again, and it droops when I am tired or pained.

Something happens inside my ear. It’s not a ringing, exactly. You know how it feels when you drive from a valley to the mountains? You get this sensation in your ear, which only disappears when it “pops.” That’s how I feel all the time, as if my ear needs to pop. It affects my hearing and balance.

My neck aches, like when you are getting a cold or the flu. My lymph nodes are swollen. I have to lie down because my neck cannot hold my head up any longer. Ice packs are in abundance. Under my neck, under my ankle, on my swollen knees.

I agonize over what to do. I hate to go back on antibiotics, but at the same time, I don’t want to let this go too long and wind up hospitalized again. I make the appointment but pray this is just a flare, not a relapse. Surely it will pass.

I continue to lose weight, and I hate to go out in public because it becomes the topic of discussion. The pharmacist technician simply says, “Wow! You’ve lost weight!” There is no question, so I’m not sure how to respond.

A woman at a basketball game blurts out, “You are withering away.” Again, a statement. I reply, “I’ve been sick, and I quit eating gluten, dairy and sugar.” She touches her stomach and jokes that she clearly hasn’t given up anything in her diet. I smile.

But inside, I scream. I filter. I want to ask her why it’s OK to verbally criticize my being underweight when I would never criticize her being a little overweight. And why do we, as women, criticize ourselves, making jokes about our own weight?

None of this is copacetic.

I have learned to fake it. I smile. I say I’m fine. When asked how I’m doing, I stay positive. I have good days and bad days, I say. Today is a good day.

I leave out the chronic pain, the fatigue, the headache, the dizziness. I don’t tell them I’m holding my hands tight to my body so people won’t notice the twitching. I omit the fact that I’ve vomited every evening for the last three days.

People don’t want to hear that I feel like sh*t. When we ask how someone is feeling, we want to here good news. Generally people don’t know how to react to the truth. They need me to be OK, to be improving.  They want to believe that someday I will be back to normal.

But this is my new normal. This is my life now. It’s unpredictable. Yes, there are good and bad days, but even the good days have pain and sadness. Even the good days are lonely.

It’s been about 16 months since I became symptomatic and had to stop working. In that time, friendships have dissipated. For most, life is busy, and though they care about me, distance has created an awkwardness in our relationship. Texts and phone calls eventually stop. Only a couple women work to maintain our friendship, and, yes, it is work because I am not always a good friend.

I am scattered and forgetful. I am unreliable. I make dinner plans, then I’m forced to cancel because I’m too sick to leave the house. I have difficulty listening to people complain about the little things in their lives when my whole life feels hijacked by Lyme disease. Yet, I know it is these things that matter at the moment.  I remember a time when these menial issues would have felt huge to me as well, but that time feels so long ago.

I want to talk about Lyme disease, a topic few people in my life even understand. I want to lament the lack of research, the lack of funding and the lack of understanding. I want to discuss the new study on biofilms I read about yesterday.

But there is no one who really comprehends Lyme disease. You don’t get it until you have it.

I sure didn’t. Lyme disease was a distant thought. I knew it existed but had no idea it was potentially deadly. I didn’t know that it is the most commonly reported vector-borne illness in the U.S. However, it can feel like only the individuals who are infected seem to care about it. I am part of a few online Lyme support groups, but here, in the real world, I am alone.

After three weeks, I accept that this is more than a flare and I see my doctor. We decide to hit this relapse head-on. Hopefully I’ve caught it early enough. IV antibiotics are prescribed as well as oral medications. A home health nurse will come to my house once a week to clean and redress my chest port. Blood will routinely be taken to make sure my liver isn’t damaged by the prescriptions. My job right now is to rest and recover.

I fight this disease by reclining as much as possible. I learn to lean heavily on my family again. It is difficult to hold a washcloth over your chest port while simultaneously washing your hair. I need help, and I have to swallow my pride and welcome it. I continue to nourish my body by eating clean and taking supplements.

I know there is little likelihood of me ever being completely symptom-free. I continue to accept this, but I do so with the hope of more good days than bad.

A few hours without pain.

A few days without a headache.

The time my muscle spasms and twitches stop and writing becomes natural again.

Today, I am well enough to be present, but I’m too tired to fake it for you. I need people to understand the day in and day out life of someone with Lyme.

Because this could be you. This could be your daughter or your sister or your mother.

No one is exempt. No one is immune. Everyone is susceptible to this life-thieving disease. Conversations about Lyme disease must transpire between all of us, including those who are not infected.

Because we are all affected. You do not have to be infected to be affected.

My life and my story matter. I hope. I try. I fight.

And when I can, I write.

Follow this journey on A Broken Crayon.

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