‘FIBROMYALGIA PAIN FEELS LIKE:’
For Fibromyalgia and ME/CFS Awareness Day 2023
© 2022 By Shiloh Moore
May 12 is Fibromyalgia and ME/CFS Awareness Day. I prepared this artwork for Severe ME Awareness Day Aug 8 last year, but was not well enough to post it online. I have had Severe Fibromyalgia and ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) for 33 years since I was 10 years old.
As a child and teenager I woke up screaming from nightmares of the following imagery and the pain was real. I no longer have these visual dreams, but I still wake crying out every night and the pain remains this extreme constantly. I have not experienced anything less than 7/10 pain since I was 13 years old. In truth I’ve experienced more like 100/10 multiple times.
Image descriptions:
‘Fibromyalgia Pain Feels Like:’
Poisonous Snakes, squeezing, suffocating, biting all over
Poisonous Spiders, all over, biting, crawling
Thousands of Pins and Needles
Treading Water, drowning, exhausted
Burning alive
Silently Screaming, nobody hearing
24/7
© 2022 By Shiloh Moore
My pain is not visible. Since childhood I have learned to block out the pain. For four years as a child Fibromyalgia was undiagnosed and doctors said everyone had growing pains, so I thought I was naughty for complaining. I learned not to complain, and blocked the pain out. I would live ‘out of body,’ in my mind, and go to a place, deep within where I am loved and I am safe.
I now treat the pain as a companion and no longer fear it. I have learned to block out the pain, or to be with the pain, meditate, and know I am safe in my beautiful body. For several hours every day I need ‘wholehearted rest’ – rest with no sensory stimulus. I chant comforting lyrics with simple melodies silently in my head, to slow… down… my… mind… to… ease… the… pain…
‘Spacious Peace’ is one example of a chant I meditate on to ease the pain. This video on YouTube is a recording from the one and only time I sat up at the piano and played it out loud in full. https://youtu.be/1WGtuV_MRAQ
Spacious Peace
© 2022 by Shiloh Moore
You are loved
You are safe
You may live your life with ease
Live in the moment
Take a breath
This won’t be forever
You may rest
Spacious, peaceful peace
Infinite blissful bliss
Serenity, Serenity
Relax,
Let Go
Go With The Flow
For more art by Shiloh Moore see See ME Expo Shiloh Moore Art and Words www.seemeexpo.com/shiloh-moore and Shiloh’s website www.byshi.hogfish.net including ME/CFS advocacy http://byshi.hogfish.net/mecfs-advocacy/ @ByShi.Art on Facebook & Instagram