Misconceptions of Lyme

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I’m thankful and sad at the same time.  I had to tell a friend that I couldn’t hug her when she came in the room.  She was getting over being sick, not my kind of sick, a good sick… one that you feel shitty for a few days with and then move on.

I had to tell her that I couldn’t be close to her because of my Lyme disease and how it compromises my immune system. She said like most “I had no idea you were sick.”  For that, I am thankful. I don’t want my friend to change how they think of me because of my illness. I want them to love me for my personality, not pity friend me for my illness.

But, most don’t really understand Lyme. Again, I am thankful.  That means that Lyme hasn’t touched their lives yet, not like it has my family.

I didn’t know you were sick.

Many people with Lyme go years and don’t know they are sick themselves. They just know something is off.. not right.. different. They know their bodies are not what they should feel like. But most doctors tell them to get out more, stretch, take vitamins, move through it.

It’s okay that you didn’t know I that I stayed home wrapped in a blanket, not able to get my body heat up, aching from head to toe. I didn’t tell you.

It took me over 20 years to finally have an understanding of what was happening to me, to get a diagnosis.  I knew I was sick, I just didn’t have a name for it.

Your bitch face is fierce

Some take that as an honor.  That complement of fierceness and bitch strength.  But being called a bitch for trying to hide the discomfort of my body, the exhaustion of the day, and desire to be home in comfy pants instead of this ridiculous bra, that hurts.

I am more fierce than you know. I battled a disease with no cure today and there were moments that it almost won. I swung hard at invisible bacteria that runs through my blood and tears at my organs and still managed to make a dessert for 20 to enjoy.

But it knocked me off my feet when that person that everyone “loves” because she is so friendly and fun looked at me directly and made sure I knew I wasn’t invited to her birthday gala. “Not YOU, no.. this is for my friends. No, not you.”  because I’m not friendly enough for her, not fun, yet not bitch enough to call her out for her rudeness at interrupting my conversation with someone else to talk about her fun filled ladies’ night.  However, as it was called out again, my Bitch Face is my mask.

Being an introvert AND having Chronic late stage Lyme is pretty much locking up your social life in a box that you don’t have the key to.  Instead of screaming my disease, I accept Bitch as my name and move on.

I thought you could just take antibiotics and get over it.

You can. If you catch the tick bite early, get treated right away.  If treated within the first 30 days of infection, most people bitten by Lyme carrying ticks can go on to live a life without chronic Lyme issues.

However for a lot of people like myself, that diagnosis didn’t come right away. I was likely bitten as a small girl living in the woods.  I was a wild child, and tick bites were common. Most of the time I’d flick them with my tiny fingers.  My Gram would pull them with tweezers because I wouldn’t sit still for taking a hot match to my skin to make the tick back off and let go.  And I was the kid with the scratches, rashes, and bruises.  In fact, I was likely infected repeatedly, tick bites and red rashes were common to my days.

After my diagnosis I went on treatments of Doxycycline for 30 days at a time.  It destroys all of the good bacteria in your body white it tries to hunt down the bad. You get so sick you can’t stand up, barely make it to the bathroom, then cry alone in there because you are not sure what end to put where. Your body hates you, and you hate your body.   I do that treatment every year.  Some years I think… maybe I won’t fight anymore.

I understand what you are going through.  

Do you?  I’m not sure anyone who isn’t living with a disease that takes away their thoughts and memories, ruins their body, and even worse… a disease that they plagued their children with so they can watch in shame and horror as their children begin to suffer the same fate as they have.  I’m not sure most people can actually understand what it is to live with Lyme and to know you have sentenced your children to pain.

Most people don’t die directly of Lyme Disease.  We die from organ failure. We die from weakened immune systems.  We most commonly die by our own choice.

Suicide is the leading cause of death in Lyme Disease patients.

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There are times when the bacteria is high, every muscle in your body hurts. It hurts to breath and it hurts to be touched. Sitting is cruel and walking is worse. Pain is never-ending. When you start to treat the disease and it dies back, the disease itself releases a toxin that goes to your brain, sending a message “Stop this! I’m Dying”

The Herxheimer reaction is the disease trying to stop you from killing off the bacteria by making you feel sicker, weaker, and even more depressed.

There have been times in my battle against Lyme that I’ve begged my husband to help me die. I’ve watched his face and felt even worse for asking him for such a thing.

So can you really understand what I am going through?

On TV, that lady with Lyme was bedridden, why aren’t you?

Because I have Lyme Disease, but I refuse to let Lyme Disease have me.

I get up every day, get dressed, go about my day, and do my best to live a normal life. I know my limits, and do my best to push them further.

Some days are harder. My body doesn’t deal with stress too well. It drains my energy and even changes my hormone reaction.  Admittedly, when I am stressed I get angry fast and burn out in minutes.  Then I spend hours trying to calm the tremors and loss of body heat.

Lyme Disease isnt Real

Recently I was dealing with some family drama here in the house. I just couldn’t get away from it and there was no peace. I spent days in my room, I was physically exhausted and mentally dark. The Lyme fog was bad.  The depression was worse. And every time I left my room the drama forced me back into a retreat.  I haven’t been that sick in a long time.  I stayed away from friends because I just felt terrible and when I did try to get out to be social, I know my pain and illness wrapped around me. I usually left early.

I have Lyme, but I will survive.

That’s the one thing I tell myself every morning when I am trying to swallow my pills or keep from puking after brushing my teeth.

It’s the thing I remind myself when I am jarred awake by waves of tremors, pain, then an anxiety attack. I will survive.

Battling Lyme begins with wanting to win.  After that, it’s all about learning how to survive.

Love, Crysta - Dancing With Fireflies

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3 comments

  1. Wow very sorry to hear that you have this. I am from the east coast where Lyme disease is common. My brother and younger cousin both have it – they were each treated early but still have chronic symptoms.

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  2. Thank you for sharing your struggles. I knew that Lyme disease is caused by tick bites (and have always thought it’s a wonder most people in the southern U.S. don’t suffer from it) but that’s literally all I knew about the disease until I read your blog. Your determination to live a normal life and your grace in dealing with Lyme are an inspiration. Prayers for you and your family.

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