Where the Hell are my Wings?

June 5, 2014

Where the Hell are my Wings?

June 5, 2014
Posted in: Lyme Disease, Mastheads, Nature | Reading Time: 3 minutes

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If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.”  ~ Martin Luther King Jr.

A flock of brawny pelicans soar the sky above the sea one evening. I'm feeling weak and my headaches have returned. All that gain I made in the past few months has withered slightly. With every change of medication, five steps toward recovery are made, followed by two or three steps back. It's common to plateau or regress slightly, my doctor tells me.

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The phantom smells that showed up in 2008 intermittently and unexplained by doctors have also returned, almost all the time. "Phantom-what," you may ask? Auditory and visual hallucinations are common in patients with Lyme disease in the brain. So are olfactory hallucinations, otherwise known as "phantom smells." Your nose smells something that isn't there. For me, that smell is cigarette smoke. To me, that is the most offensive odor on the planet. Though I have a handful of friends who smoke, I could barely tolerate it when I didn't have Lyme. And now I smell it almost all the time, sometimes so strongly I can barely breathe. Of all the phantom smells my body could choose, why this one? Why not the smell of freshly baked cookies? Because Lyme disease is a cruel bastard.

Just a few weeks ago, when I was high on my energy returning, I had boasted to Mr. Wild Dingo how I was becoming human again, reaching out to friends, socializing and listening to music, almost normal. He grew quiet. When I pressed him, he reluctantly agreed they were great signs of improvement but admitted as sensitively as could:

"You're not as intelligent as you were when we got married. And you still can't multi-task."

Ouch!

"Well, it's a good thing you didn't marry me for my brains," I tell him. At least I haven't lost my entire sense of humor.

He's not wrong. Though I'm sleeping better, my brain fog continues. Words still escape me. "Extinguisher," a common household item and common word, forgotten in a story I'm telling. The listener reminds me of the word to help me along and two sentences later, I forgot it again.

Thankfully, I started on the IM injections which means one less oral antibiotic to take and hopefully less nausea.  I may have had no appetite, but have not enjoyed the benefits of it by losing a few pounds. Like I said, Lyme disease is a cruel bastard.

I'm back to needing a ton more down time and rest. The dogs still get big walks but the afternoons, which I'd generally use for errands, home projects, writing or geeking-out on the computer, are now spent back on my faithful sofa, with my green bucket for company.

Still, I've been toying with my goals after recovery. For a Lymie, that's a very good thing to have ambitions outside of recovery. Metaphorically, some days I can run, some days I can walk and some days I can crawl.  Someday I will fly.  For now my momentum is forward and that's all that matters.

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Where the hell are my wings?
June 2014

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3 comments on “Where the Hell are my Wings?”

  1. Hey Julie,

    Hope you are feeling better. I'm so sorry that you are feeling so sick. At least your great sense of humour is still intact! 🙂

    I don't know anything about Lyme disease - how long does it take you to recover from it?

    Homer sends a big hug to you.

    XOXOXO
    Vanessa

  2. Cigarette smoke?!? Ugh. The brain is a complex, crazy thing, but that's just cruel. Having been in Utah for so long (where smoking is almost non-existent), when I go to North Carolina to see my family, cigarette smoke just kills me. I can't imagine having to deal with that. I actually can't imagine any of it. But I'm sending you warm fuzzies through the ether.

    -Dr. Liz

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