This Is What Lyme Disease Feels Like

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iStock_000013011972_LargeIt’s a beautiful day — stunning actually — but I’ve been lying in bed since one in the afternoon. I’s now almost six and I’ve wasted yet another day thanks to Lyme disease.

In the last week, my joint pain has been getting worse and worse. Today, it feels like I’ve been hit by a truck. Every muscle hurts to touch. My hair started falling out in the shower. Most joints in my body are extremely painful. It hurts to open my hands or bend my elbows. It hurts to stand up because my right forefoot screams out in agony. My right knee, both hips and my neck are joining in on the fun. I have a horrible headache, but none of these pains are the worst of it.

I feel like the life has been literally sucked right out of me. The fatigue is overwhelming. I’m so tired that my eyelids struggle staying open — like they do when you’re listening to a boring afternoon lecture in a dark room. As tired as I am, the bitch of it is that during these cycles, I am awake during the night. I lay there tossing and turning, tossing and turning, trying not to wake my husband. I have grown to fear getting up to go to the bathroom because the walk (or should I say shuffle) to the bathroom is so painful. It’s not a pretty sight.

There’s also another side of Lyme people don’t often talk about — the anxiety, fear and depression that hangs a dark cloud right over your head. This doesn’t happen because you feel sorry for yourself — it happens because the bacteria gets into your brain. Lyme disease is a spiral-shaped bacteria called a spriochete that looks like a cork screw. If you remember reading about people who went “crazy” and some who killed themselves when Syphilis (another spirochete) went undiagnosed, it was because these suckers drilled right their brains. Simply put, brains don’t like inflammation OR sprirochetes.

But this is my new “norm” so I deal with it. This is what Lyme disease feels like.

We “Lymies,” which is what we call ourselves, don’t like to share the truth with our friends because it makes us look weak. It’s not a disease people understand so we end up feeling alone and scared. We paint fake smiles on our faces when we see you and tell you that we feel fine. We add smiley faces and exclamation marks to text message so we “sound” good.
We pretend like nothing is wrong… except you can’t hide from your partner. Sadly, he or she sees the truth about the torture this disease brings.

The hardest part about Lyme disease is that it constantly teases you. You feel better for a while and you think you’ve finally won the good fight. You do what you’re supposed to do: You eat well, you takes your meds and supplements, you exercise. You do everything your doctor tells you to do, yet it still comes back. And when it comes back, it comes back with a vengeance. You feel like the underdog boxer who is beating the heavyweight champion in the 11th round. It’s so exciting to be winning until the champ knocks you out in the 12th.

Lyme disease has a cycle. I think it’s different for everyone. I once went two full months when I felt really, really good. To feel “normal” again was simply amazing and I was so incredibly grateful. But I am mostly living a four- to five-week cycle of hell. The joint pain never goes away, but the intensity skyrockets during these periods. I don’t know if it’s the Lyme disease or one of the co-infections (Bartonella, Babesia, Ehrlichia, or Anaplasmosis) I got from the bite of a tiny tick that is causing my problems. All I know is that it sucks.

So I’ll do what I need to do to get through this. Hopefully, this terrible spell will only last a couple of days. I will lay low, sleep as much as I can and wait. Wait for the pain and fatigue to get better and, more importantly, wait for a cure.

 

Previously Published in The Huffington Post

8 Comments:

  • June 17, 2015

    Molly,
    You are brave. You are strong. You are a fighter. I love you and it hurts my heart to hear what you go through. But don’t stop telling us. You don’t have to bundle it up. Let others feel for you. We just wish we could take your pain away. We love you. You don’t have to pretend it’s all puppies and kittens. We’ll love you just the same.
    Xoxoxo
    VB

    • June 17, 2015

      Thanks Vicki…love you too!

  • kirsten
    June 17, 2015

    DITTO Vicki…Molly, i had no idea you were still feeling like this…my heart is breaking…hang tough sista and really enjoy the good days…hope to see you this summer at beach? loving you.

    • June 17, 2015

      Thanks KT. I hope I can make it! Would love to see you…

  • Jona
    August 27, 2015

    I did not know until reading this article dear friend. Praying for better days for you. God bless you and thanks for the article.jlb

    • August 27, 2015

      Thanks Jona. It’s been an on-going battle for over 10 years but I think I’m finally coming around the corner. 🙂 I appreciate your message…I’m really happy that the Huffington Post published it… xo

  • Dena
    December 8, 2016

    Hello I ran across your site typing ledum into the Google bar. My young friend has debilitating Lyme as well . Very sorry to read of your illness. I wanted to ask you have you ever tried Ledum? Seems to be helping
    many people. I am going to let my friend know of it. Apparently it’s the 1M strength and you take one or two pills 3 times a day for 3 days. Take care God bless Molly.

    • December 9, 2016

      Hi Dena: Thanks for taking the time to write. I have not tried Ledum but have used some other essential oils. I have been doing ozone therapy which has helped me get off antibiotics for 4 months now. Perhaps your friend can try that therapy. Please let us know how she is doing.

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