May 3
Myalgic Encephalomyelitis
May is ME awareness month and so I’ll break it down in a few poems over the next week or so. I have had this chronic illness for 11 years this month. Sigh. Let’s start by breaking down these hard to say words into their even harder to live with components.
Myalgic Encephalomyelitis
Can I turn this shit show
Into a palatable poem?
I can try…
Myalgic Encephalomyelitis
It’s a hard thing to say
Even harder to live with
And no end in sight
MY - muscle
ALGIC - pain
MYALGIC is pain, on another scale
Like everything is on fire
Or heavy like lead, or twitchy
Or stinging, I like the stinging least
ENCEPHALO is the brain
It’s a complex neurological disorder
Once I had ME I learned
A lot of medical words that I wish
I never needed to know
When you get something
That is woefully under researched
And under resourced
You become your own doctor
And an expert in helping others
MYEL is the spinal cord
Which makes sense as it’s all connected
Brain and spinal cord all working together
talking to one another
and their messages back and forward
PAIN and ITIS - inflammation
ENCEPHALOMYELITIS
Brain and spinal cord inflammation
Fun times, it isn’t.
ME is sometimes called ME/CFS. CFS, Chronic Fatigue Syndrome is a reductionist way of thinking about this illness as it is way more than being tired all the time. I’ll try and explain more as we go, come back to learn more if you would like to. Please share if you want to educate others too, or have someone you love who is suffering with this or Long Covid (which can show all the hallmarks of this too).
Love you Sarah
Never easy 💙