Category Archives: Chronic pain

A year fit into me…

When I was having my first massage in a long while with Abby I has a transformative experience. It was one of those moments when you aren’t sleeping but you aren’t fully engaged with world and you can reach into your mind and really identify the things you NEED to do with your life.

I discovered what 2021 has to be about for me.

I recently has the discussion with my neurologist that he doesn’t know that there is anything more he can do to help me. I have failed all the drugs currently known to treat fibromyalgia.

So in this coming year I need to learn how to live in a body that is years ahead of help from medical science.

So here is my plan:

  • Find the things I can do to help myself. These include:
    • Exercise on the BoxVR every single day regardless of how much it hurts. Even if it’s only for five minutes. All the research says movement helps fibro.
    • Meditate.
    • Stretch every day.
    • Get a massage a week.
    • Lose weight to reduce stress on already stressed joints.
    • Be kind to myself.
    • Blog about your experience regularly.

I also decided to leave the gallery and work on a book of poetry. I want to write about my experience in a way that makes it accessible to those who don’t understand invisible chronic illnesses.

Finally, I need to take the time I need to love my body. I need to find a way to appreciate what it does for me instead of focusing what it does to me.

So it’s a grandiose plan, but I am hopeful it will help.

At this point, I am my only hope.

Life without Margin…

It was supposed to be a day of rest. Having come off of two days of high energy and low pain levels I knew another flare was coming. I planned to do a load of laundry, sit in the car while my newly permitted teen drove, and make a good dinner. The rest of the day was to be spent expending as little energy as possible and dealing with the aches and pains of activity.

I had my coffee, I took out the dog. The pain level wasn’t too terribly bad, about a 6. All over body aches, joint pain, headache. Your basic flu feeling.

I came upstairs to luxuriate in my bed, watch a show – my hands hurt too much to hold a book up for reading – and snuggle my dog. I came up stairs slowly, muscles aching with each step. I came to the door and low and behold there was my cat, peeing on my bed.

Suddenly my day of rest became stripping the bed linens off to see if her commentary had soaked through to the mattress protector underneath. It had. Then it was gathering up the whole kit and kaboodle, getting it into baskets, getting out a fresh protector, fresh linens, new blankets. Of course everything was on different floors of the three story house because laundry is in the basement and I live on the highest floor.

Up down, up down… can’t keep going. Get the sheets on… get the blanket on… kiddo, please help me with the pillows.
I’ll pay you to do the rest.

And I’m done.

Living with chronic pain is like living paycheck to paycheck. You may do just fine so long as everything happens as expected, so long as you can forgo some things and appropriately prioritize others.

However, as soon as the unexpected strikes you are borrowing on credit and you will have to pay for the expenses another day, or several other days. As for interest, you can push yourself into another flare up and lose days, weeks, sometimes more to lowered energy levels, high pain, medication side effects, etc.

It’s life without a margin, without a safety net and believe me, it sucks.

Broken, not broken enough…

My broken is not broken enough
to get the help I need
to stop the bleed

of endless co-pays and medical bills
of supplement costs
of specialist fees.

any adventure I manage to have
any life I squeeze
any pleasure I tease

from this tattered body and shattered dreams
becomes the reason You see
to refuse the need.

my broken is not broken enough
i should be deteriorating more
lying prone on the floor

or screaming in torment and pain
unable to enjoy a thing
enterally suffering.

my walk with the dog around the block
isn’t a sign that I’m lying
i don’t have to be constantly crying

to need help and support
from my village
it isn’t my intent to pillage

i would work if I could.

You would see the food thrown to the crows
rather than let it slip
through my lips

because it might have been earned with your labor
and You never need a favor
everything You have You worked for.

You personally paid for the street that was laid
for your car to traverse
on your way to work.

And the water You mindlessly drink
from your kitchen sink
comes from your well

dug with your own hands at your own cost
You got nothing from us
never even rode a bus.

My broken isn’t broken enough
to stir empathy
in your heart

You lack the sympathy
to understand
You won’t lend a hand

You are your own man.