Electrical Butterfly Beats

I woke up this morning to something different, something that scared me. I was of course tired and no one ever wants to leap out of bed to get ready to go to the gynecologist, but it had nothing to do with the gynecologist, it was my body.

This morning, I had a minor tingling in both hands and feet. All were numb. It might not make sense how you can be tingling and numb at the same time, but if you’ve ever had a neurological disease, you probably know exactly what I’m talking about. My first instinct is to curl into a ball and just cancel the gynecologist as this feels scary. My usual neuropathy pain is excruciating. This is almost like butterfly wing beats constantly on my fingers and toes with a slight edge of electricity.

I’m not one to just turn over and curl into a ball and forget about life as that would definitely make me miserable, but we all deserve moments of fear and “why me?” So I get up with plenty of stumbling, grab my cane as I was too tired to bring my wheelchair into the house after my wonderful excursion yesterday. I’m thinking maybe between yoga and a short hike in two days I overdid it? A check of my sleep app shows I slept over 9 hours straight, which is definitely weird for me.

I go about my morning sitting in my shower as my house isn’t handicapped accessible—yet, but I get my clothes on stumbling around making an attempt to go about my normal routine knowing I have been diagnosed with progressive neurological muscle wasting disease (why can’t I find my stupid genetic testing I put in a “safe” place) and attempting to ignore that nagging fear in my mind if I’m progressing. God, I just want the normal I have now is all I can think.

Yoga is cliche. Kale is cliche, but I also know they help me personally feel so much better and can tell if I skip it. I do a couple yoga stretches while the dogs eat their breakfast and suck down my smoothie full of kale, spinach, some fruits and lots of healthy stuff knowing kale and yoga won’t fix it, but it could prolong my ability to move.

Two years ago, I went to the gynecologist for the first time in probably 20 years due to having such horrible problems that couldn’t be ignored anymore. Past sexual trauma made me sob through the entire exam two years ago. Today. I show up in my wheelchair, whereas I was walking 2 years ago. The gynecologist asks me about what has happened and my laundry list of diagnoses.

She begins with the breast exam, which I couldn’t handle before, I’m not even thinking about it. We are chatting away about my yoga practice, my book, my meditation practice and soon to be taking on one on one meditation clients, the yoga teacher training school I hope to go to…

At the beginning of the actual exam, she gently asks, “are you going to be ok with this?” I reply, “no problem” as it really is no problem as I don’t even think twice about anything invasive now. I am safe. So as any woman knows that these exams are far from pleasant, but I tell her about my forearm crutches that were made by a woman amputee who wanted to climb really tall mountains and designed them for people for people with disabilities to be able to enjoy the outdoors, and it’s over.

I’m back home again filled with plenty of fear about my fingers and toes being hit with electrical butterfly wing beats. It’s the only way I can even begin to describe it. Maybe electrical butterflies mean transformation? It might not be a transformation I enjoy. Maybe I will lose my ability to use my hands? My feet are fairly useless anyway, so I can’t get too upset about that I suppose. Maybe it’s positive? I don’t know.

I guess if I look at how I conquered the gynecologist compared to just two years ago. I’m hopeful I can conquer losing my hands, if it even comes to that.

Maybe the butterflies are just spending time with me for a bit to remind me of something? It doesn’t make my fear less real, but it does make for a lovely image to counteract the scared. In the meantime, I’ll just be a cliche of kale and yoga.

Love

Lizzie

4 thoughts on “Electrical Butterfly Beats”

  1. Lizzy, I can understand your reaction to the sensations… fear of unknown. What might it mean? In my past experience, it was first due to irritation of nerve ending secondary to manipulation of surgery & normal swelling due to surgery. May push nerves up against bones & may result in anything from mild needle & pins.. to very intense nerve pain. For my back , if I over exert my self with bending,lifting, not stopping to rest, not happy🤕.When living in an apt, Climbing 4 flights of stairs ,chasing my cat sent me to neuro. With numbness etc. He felt it was the facets (type of bone on spine which helps with support of the spine.)An MRI revealed many places were it could cause, pain if pressure increased pushing nerve or disc against the spine. I found short times of resting, good body posture, PT and setting limits on my activities helped me to stay safe . Good self care rules with backs! Planned periods of up then resting for x amount keeps life more stable.I think you know all of self care
    Having to live that way is physically & emotionally exhausting.. It helps having friends like you that can listen, share, inspire but most of all Be Real! Love Louise

    Liked by 1 person

    1. Thank you Louise. Of course, plenty of rest is in order. As I’ve been learning more about my genetic disease from people who are the most experts I can access, these changes in symptoms are very frightening prospects me with an extremely unknown future. CMT4J progresses similar to ALS with an unknown of when or how. Scary times. Always appreciate your support. I’m just spending time with my butterflies 🦋

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      1. Well Lizzy, Butterflies are beautiful beings with their colorful wings, so delicate & mesmerizing as they fly. Interesting that you chose such & beautiful creature to accompany you on your journey. It can be an uplifting symbol of your journey the past two years.

        Liked by 1 person

  2. Thank you for sharing, Lizzie. I appreciate that you write through the trauma and reality, rather than around them. It lets your readers see straight into your heart and mind. Love you, my friend!

    Liked by 1 person

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