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What a Lyme Disease Flare Is Like for Me

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I stink. Or at least my grimy hair does, and we’re a solid day past anything a little dry shampoo can save. But my eyes must weigh at least a thousand pounds, and my lungs are like cranky little boxes with a waiting line behind them. No matter whose turn it is, they never quite get filled, and so they’re just piled up with one angry customer after another. And don’t get me started on my heart. What is his deal today? He woke me up several times throughout the night with the force of his pounding and racing. These folks are not going to be happy about standing up in the shower.

But my hair is grimy. Joints chime in before I’ve even firmly planted both feet within the shower stall. They are not having this stepping and bending nonsense. For whatever reason, even the most benign thoughts leave me with a pressing tightness around my chest. And as I remove my hands from washing the back of my hair, I find both of them disguised by the wads of hair that came with them — no longer attached to my head. What is going on today? Oh, right.

This is a Lyme disease flare for me.

Awesome, I think, mentally running through all the things that need to be done within the next several days that most certainly will not occur. And I carefully consider which ones I must force myself to do regardless of the cost. These generally center on my kiddos.

After the shower, I fling myself onto the bed, too weak to even search for clothes. The left side of my mouth disappears. Eating and communicating are going to be difficult today. “Mouth, I really need you today,” I say to myself, considering preschool that needs to happen and orthodontist appointments for the big kids.

A tiny but perfect face appears next to me. “Do you want to play ponies, please Mom?” I do not want to play ponies. This is a Lyme flare for me. “Sure, can I play with my eyes closed?” “Also, can I have some chocolate milk? I loooooove it because it’s so chocolatey.” How can she be so cute and also be asking me for something so impossible? I consider the distance from the bed to the refrigerator. How could my body do it? I look at her bright eyes, expectant, and I fling myself from the bed.

I run through my phone contacts in my mind’s eye. Who could entertain this darling child of mine today? Anything would be more fun for her than playing ponies in my bed. How will I ever get us ready for preschool? Curse you, orthodontist, for being today.

The phone makes a horrific buzzing sound that makes me want to hurl it across the room. Who would do that to me? Don’t they know this is a Lyme flare for me? Oh, right. I asked them about entertaining my precious little one.

And so off my little one goes. And I know it’s best for her, and friends like this are worth far more than their weight in gold… and yet I climb back under the covers and weep. Because this is not the mom I long to be. And because this is a Lyme flare for me.

Thank God Lyme flares don’t last forever for me, and also for the love and support of family and friends whose encouragement give us all the strength to fight and overcome this terrible disease. If you believe you or someone you love may have Lyme disease, contact ILADS Physician Referral to locate a Lyme-literate physician near you.

Editor’s note: This is based on one person’s experience and should not be considered medical advice. If you experience health problems or have any questions or concerns, please consult a doctor or other medical professional.

Originally published: February 19, 2016
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