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.

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When My Dog Comforts Me on the Rough Days With My Lyme Disease

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This morning I sat outside for a few minutes, enjoying the gentle breeze and shade on the steps outside my backdoor. My dog, Tooka, was loving every minute. She busily pranced around the yard, trying to breathe in all of the scents and sounds of the simple backyard world around us.

This pup has brought so much sunshine to my life since we brought her home over a year ago. Our friendship seemed meant to be. She spent long days home alone after her previous owner passed suddenly. I was home alone fighting illness and navigating my own loss of normalcy and health in life. Now we spend our days together, often sharing the couch on my harder days.

As we both sat outside enjoying a few minutes of fresh air and a bird singing nearby, I watched her simple contentedness. Sniffing the air and everything around the yard, she pranced back and forth along the walkway, and then back to lie next to me on the steps. Oh to be a pup, where life is all about play, sleep and eat, am I right?

Dog sitting and looking happy at home

Yet, in the midst of the simplicity, I see in her life as a dog, she is unwavering in her role as companion. It’s really not all about play, sleep and eat for her. If I’m having a worse-than-normal day with this disease, she can usually be found within a foot of me at all times. “Shadow” is one of her many nicknames, as is “nurse Tooka.”

On my way to the bathroom? She’ll wait outside the door. Moving from couch to bed? She relocates, too. Filling my glass with water? She follows, though I think in this case she’s actually hoping for some food to fall from the refrigerator… minor details.

Then there are the moments when my emotions and the weight of living with Lyme disease become too much and a meltdown occurs. My voice cracks, tears begin to flow and within seconds she is up from her bed and right over to comfort, even if just to sit at my feet. Or lick them. Or lay her head in my lap. Anything that involves being close enough to be touching me so I know: she’s there.

I know not everyone is a dog person, or an animal person for that matter. I get that some might not be able to understand why I love this furry four-legged cutie so much. Or post as many photos of her as I do on Instagram. Yet, next to my husband, she’s become my “person” at home and a regular dose of therapy for me.

She’s my snuggle buddy on the rough days and weeks when Lyme keeps me bedridden.

Dog lying on yellow, blue and white blanket

My comforter when words won’t cut it.

Dog laying head on owner's lap

A never-ending source of humor. This dog’s personality is the best. She can always make me smile.

Woman lying on floor with her dog nuzzling her cheek

So here’s to Tooka and the many other pets who have stood patiently by their owners as they’ve fought disease and the weight of the hard in this life. The comfort, laughter and joy they bring to our darkest days don’t go unnoticed.

Follow this journey on Living Grace.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Person Diagnosed With Lyme Disease Who's Not Getting Better

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I was you once. Two and a half long years ago.

When you finally receive the diagnosis of chronic Lyme disease, it may feel like a huge weight has been lifted from your shoulders. You’ve been in pain and struggling for so long with no answers. Now that you have one, you may think life will get easier, and it may for awhile now that your condition has a name. You feel vindicated. You can now tell people you have Lyme.

But slowly the sad reality sinks in. You are not getting better despite the diagnosis. You are not being cured despite the medicine you are given. It can feel like you are walking on quicksand.

Days go by, and you struggle to find the reason why you are not getting better. You decide to become an expert on Lyme disease, but your brain fog and memory loss make that task difficult.

So you take what you are given, try to eat better and look for the light at the end of the tunnel.

But there are no concrete answers. Welcome to the Lyme Zone, a dimension where bright sights and loud sounds can hurt you, where finding a doctor who can actually reduce your suffering can be like finding a needle in a haystack.

Your family and friends may become distant as you are often sick and unable to participate in life’s pleasures. Your relationship with your spouse and kids may become strained. They miss the old you, and you wonder if she will ever come back.

I know what you are going through. I am so sorry for all of your pain. I wish I could take it all away.

I am here to tell you though it is a long, horrible road, you will feel better. You may not be cured, but you will feel better. Keep track of how you are feeling, and when something makes you feel even the slightest bit better, let your doctors know. It may set you on the right track. If a doctor fails to help you or listen, find another.

You can have a million ups and downs, but never give up. Take each tiny victory as a sign you are on the right path.

As hard as it can be to concentrate and enjoy things, find something you can tolerate to pass the time. Take up quilting, learn to play an instrument, volunteer, learn a new computer program, play solitaire, start journaling or blogging. I have always written poetry, and I now have some Facebook pages and blogs to pass the time and release my emotions. I try to make a difference in other people’s lives, though I may struggle to make it through the day.

Do what makes you happy when you can, and look forward to the next time you are able to do it. Have something to look forward to, even if it is only once a week. Get out of bed and make yourself look fabulous whenever you have the energy to. Life has a purpose. Find yours.

Watch and follow positive stories and role models. People who provide the light and perform good deeds can help us find the good in life. They can help us get through the torment that Lyme disease puts us through. They can help lead the way to a brighter day.

Think it. Believe it. Feel it within every inch of your soul.

And it can happen.

You are my hero.

You will get through this.

You are worth it.

I believe in you, so please start believing in yourself.

I’m on your side. I’m right here fighting beside you.

You are not alone.

You can do this.

Now let’s get started.

Let’s kick some Lyme a**!

A version of this post first appeared on Poetologie.

 The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
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The Love Letter I Wish I Didn't Have to Write My Husband

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Sunday is Valentine’s Day. The 12th one I will spend with my husband. We are so lucky we met. We are so lucky we are still together. But I wish things were different.

Here is my love letter to him:

To my kind, smart, funny, patient and geeky husband,

We met in geek heaven. You were my loyal Samwise Gamgee, and I was your elusive Elven Queen. We planned on spending many happy and healthy years together, despite me having a few health problems such as interstitial cystitis, endometriosis and asthma. We had lots of energy when we met; we had lots of plans.

We had a child quickly due to our age. We tried to have a second one for five years. You stood by me throughout my five miscarriages. You cared for me and our beautiful daughter when I did not have the energy to do it myself. You helped mend my broken heart.

You were there to welcome our son exuberantly. You stuck by me while I sorted out my premenstrual dysmorphic disorder post-pregnancy. You always kept up hope that things would get better. That my health would improve enough for us to start planning things and start living again.

Then disaster struck in the form of Lyme disease. For the last two and a half years, it has been our Mordor. Difficult to navigate, impossible to climb. We felt like little hobbits alone in the wilderness, and like Samwise, you never left your Frodo’s side.

I wouldn’t have blamed you if you did. I feel like it’s hard on you having to work full-time, be my caretaker and help take care of our two young children. It sometimes takes its toll. I can see it in your eyes. I can tell how tired you are.

You strive to keep making us laugh when you might feel sad inside. You brought me many meals while I was in bed for nearly a year. You bring me my medicine. You are my lifeline. You are my best friend.

Sometimes, Obi Wan, you are my only hope.

Couple hugging. The woman is wearing a white sweater, and the man is wearing a black sweater. Both of them are in jeans.

When I grew up, I dreamed of the man on the white horse. I longed to meet my prince, my Sydney Carton, my Romeo, my Aragorn. Men who would love me more than anything else in the world. Men who would protect me and do almost anything for me. Men who would give their lives for me.

But none of those fictional heroes could hold a candle to you. You prove to me on a daily basis what a true hero is. He is not from a work of literature, he is not a big action movie star and he does not have to be bigger than life. He just has to be like you. Genuine, compassionate, faithful, flawed and wonderful.

You prove to me daily what true love is. It is not flowers; it is not gifts or chocolates.

It is loving someone with every inch of your soul without losing sight of yours. It is moving on from other things and opening up new doors. It is sharing in their joy and helping them through their pain. It is helping them see the bright side of things throughout the constant rain. It is hope for the future and nostalgia for the past. It is sticking by someone’s side and making your love last. It is baby steps and windy roads. It is full of light and heavy loads. It is endless happiness and times of tears. It is how I intend to spend the rest of my years.

I am sorry I do not currently live up to the expectations I set for myself as your wife. I did not intend to suffer from so many chronic illnesses. But I did intend to love you with all of my heart. I will not stop trying.

I do intend to get better. I do look forward to that day. But for now, I want you to know I notice all the things you do for me. I know you silently pray at night for me to feel better, and for my pain to end. I know you wish you could take it away.

I see it, feel it, hear it and treasure all of it. Even though I do not always acknowledge it.

I am writing this letter to show my appreciation for all you have done for me, and all you will do for me. I hope you know how much I love and admire you.

I hope you know how glad I am that I chose you to be my husband. I hope you know what a great father you are.

I am the luckiest woman in the world.

Happy Valentine’s Day.

Follow this journey on Poetologie.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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9 Things People With Lyme Disease Wish Others Understood

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Lyme disease is a condition that can affect anyone who’s been bitten by a tick that carries the disease. In the U.S. alone, an estimated 300,000 people are diagnosed with Lyme every year, according to The Centers for Disease Control and Prevention. Despite this number, the condition is widely misunderstood and worse, often goes undiagnosed.

The Mighty teamed up with ProHealth, a website with resources for people with chronic illnesses, to ask our readers affected by Lyme disease what they wish others understood about their condition.

This is what they had to say:

1. “The accompanying fatigue goes well beyond the commonly accepted experience of being tired. Lyme fatigue is unrelenting, debilitating and omnipresent. It crushes the ability to function and mocks the aspiration of a better tomorrow. Everything else — nutrition, hygiene, education, employment and a social network — disintegrates under its shroud.” — Cotton Rayne

Light blue background with words "The accompanying fatigue goes well beyond the commonly accepted experience of being tired." - Cotton Rayne

2. “It’s hard to find good care.” — Jessie Rivera Merriam

3. “Isolation and depression can occur when you cannot leave your house… sometimes you can’t leave your bed.” — Jeanne Hart

4. “[I wish others understood] the loneliness, silence and being shunned [I experience], all while being scared and literally out of [my] mind… You fight for your life researching because doctors are completely ignorant about Lyme and your family and friends don’t believe how sick you are.” — Katharine Jordan

Orange streaked background which reads "You fight for you life researching." Katharine Jordan

5. “I could not even chew from the pain and weakness.” — Elaine Calabro

6. “[I wish people understood] the boredom. My mind is hungry, but my mind is compromised.” — Toni Tester

Dark blue background which reads "My mind is hungry, but my mind is compromised." Toni Tester

7. “Things change on a moment-to-moment basis.” — Karyn Yingling-Berry

8. “It can happen to anyone!” — Carol Glasen

9. “It’s real.” — Bettyanne Mauceri

Red background which reads "It's real." Bettyanne Mauceri

If you have Lyme disease, what’s one thing you wish others understood about your condition? Let us know in the comments below.

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I Am a Lyme Disease Warrior

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Lyme disease, Babesia, bartonella and a myriad of invisible chronic conditions have consumed my body and stolen away the person I used to be. I am weak and battle-weary, but I am a warrior.

I am a Lyme disease warrior.

It feels like my once fit and athletic body has been taken away, leaving behind weak and atrophied muscles. It feels like my brain has been taken over by foggy jumbled thoughts and delayed responses, especially when trying to comprehend what I am hearing or reading. On days when my neurological Lyme symptoms are more pronounced, sound and light sensitivity escalate to the point I need to sit in complete silence, with the window shades drawn.

I am fearful of my future. I am fearful of deteriorating to the degree of what I have witnessed happen to my mother with dementia.

I try to see the lessons I am to learn from this journey. But as I write this, I am once again overcome with immense emotion — tears streaming down my face.

I loathe being this ill all of the time. Day in and day out. Week after week. Month after month. Year after year. Decade after decade. Life passes by — without me.

I pray to God for strength. I pray for my mind to be clear, and for my body to be strong. I long to be active and to live a “normal” life.

I miss the vibrant, strong-willed, independent, athletic, sassy, semi-intelligent, “life of the party” person I used to be. I miss playing golf and going for walks with my hubby. I miss working out and being fit. I miss being able to travel. I miss seeing my family. I miss socializing with friends. I miss shopping, in public, not online. I miss feeling well enough to simply leave my house!

Extreme debilitating fatigue, headaches and nausea, feeling like I have a permanent case of the flu — this is my life.

Constant body temperature changes from feverish and chills to hot flashes — this is my life.

Deep bone pain that migrates throughout my body — this is my life.

Setting alarms to map out my medications and eating schedule, which changes daily — this is my life.

On a good day, I move from my bed to my recliner, wrapped tightly under a blanket, even though it may be 100 degrees outside — this is my life.

Yes. This is all my life right now. But above all — I am thankful.

I am thankful for the days I am able to muster up the strength to get out of bed. I am thankful for the beautiful and calming view I am able to enjoy from my recliner, where I spend most of my time resting, when out of bed.

I am thankful for my caring and amazing husband, who loves me deeply and sees me for me — the sassy, strong, healthy woman he met over 22 years ago.

I am thankful for all of the support and love my husband and I receive from family members and friends throughout this relentless Lyme disease journey.

The list of all I am thankful for, by far, outweighs all of my daily challenges.

My life has changed tremendously, especially over these past 15 years, due to my battle with chronic Lyme disease, co-infections and the multitude of chronic illnesses. And while I am still battling and fighting fiercely — every day — to find wellness once again, I hope and pray to learn from this trying and challenging journey. I will continue to lean on my faith, my adoring husband, my family and my friends.

This is my life. Above all, I am thankful!

I am a Lyme disease warrior.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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