Tag Archives: #spoonielife

WHY IS THE AIR SHARP?

HOLY MOTHER OF HELL! WTF!?

There I was, managing my life with small nerve fiber neuropathy when BLAMMO suddenly one evening my hands and fingers felt like I was playing with slivers of broken glass anytime I touched anything.

This was not some gradual slide over time either. I work with my hands all the time. I use yarn, paper, glue, fabric, rocks, paints, cardboard, you name it. Usually I am fine.

Not this time. This time I’m folding my laundry and putting it away and then my socks are razor blades.

It – to understate it – sucked.

I took half an Ativan under the theory that it’s designed to send nerves into a coma and went to bed.

The next day I was a bit better though am definitely still more sensitive than I would like, all over really. I messaged my Doc and he asked “Have you been under more stress lately?”

Well duh, yeah, but knowing why I’m in a flare up doesn’t help me. You try to avoid stress when you are the disabled mother of a high school and college student, wife of a cop, and daughter/caretaker of two aging parents. It’s not like I get to just not be in stressful situations. In fact, trying to avoid them is like trying to keep cats out of a room, the harder you work to keep them out the more they want to get in.

So now that we’ve acknowledged that being a vibrating ball of stress is kind of my daily life can we move on to management please?

I got…distracted.

I had intended to return to writing here regularly but then I got distracted by art, and family, health, and pets, the state of the world, and the long list of chores that haven’t gotten done.

I’ve been relearning to love myself as a disabled person. Relearning to view my contributions to the world and my role in it.

Today I learned there is a term for me, dynamically disabled. Someone whose disability ebbs and flows with the vagaries of their body. Someone who can spend three hours deep cleaning the house one day and can barely get out of bed the next.

It’s been difficult learning to manage dynamic disability. It pretty much requires educating nearly everyone in your life to not depend on you. Which sucks. A lot. Especially for those of us who are used to being depended on.

I am getting better at managing me and the world around me. I am by no means perfect at it and I likely never will be. I am getting better.

So I am going to try to start writing again. Here. We’ll see if this time I manage to avoid the distraction.

Life Sentence

sometimes my body feels more like a prison
then it does an instrument for my mind.
i feel trapped within it’s boundaries
too limited by the shattered confines.
there are too many things I cannot do,
too many places I cannot go.
too many times I have to live
when what I want to do is thrive.

sometimes I watch the world through the bars,
these everyday eyes in this routine face.
i seep desire and wistfulness
from these pores pinned in place.
i cancel all the plans i’ve made
and apologize to the ones who’ve stayed
to love the person who is trapped inside
this fleshy prison where i reside.

—- m.morehead 2022