Tag: Myalgic Encephalomyelitis

M.E. (Anacrostic)

Memories escape me…
You’d think I’m older than I am…
Autonomic nervous system misfiring…
Lucky I have a sense of humour –
Grief would otherwise be smothering –
I remain optimistic
Counsel myself to find the lesson

Every day is a question mark
Needs ever changing
Can I walk without aids?
Endure a drive in the car?
Past my time without overexerting?
Healing requires restorative sleep
Although, it’s been years since I woke up refreshed –
Letting go of such expectations part of the learning –
Occasionally energy comes in bursts,
Mostly, it’s a trick…
Yesterday’s self no longer exists
Energy a quagmire…
Longing does not equal capability
Initiative encounters brick walls
Too often I overdo it
Insensitive to my own reality
Stubbornly unwilling to learn.

(Myalgic Encephalomyelitis is the disease I’ve lived with for 10 years now. I’ve collected a few more to keep it company along the way, and, of course, had one or two issues to start with. Anyway, I was recently inspired to write an acrostic poem. I’m sure there is more left to learn about living with these challenges. Image my own, as usual.)

Deluded

A window opened
I climbed through
forgetting…

October’s window
filled with promise,
just beyond the pane

Denial is a weasel
leads me towards
the edge…

Those madmen thoughts:
ambition, self-importance –
life has humbled me,
yet again…

(Poem first appeared on Twitter. Art my own)

Mastery

Happenstance welcome,
dreamer that I am

Loyal to memories
and committed to progress

Professional ambitions unrequited,
I seek new avenues…

Failure a nag
provokes hesitation

Let me be!
I am independent!

This path is unique
and while I dwell
in contemplation of what ifs

I recognize my challenges,
the unreliability of illness,
expect no encores

Easier to focus
on what I can master
today.

(Watercolour mine)

Visible, Yet Hidden

I am visible, yet hiding –
balancing a vitality-blocking
disorder that renders me
inanimate, repulsive –

Who doesn’t flinch
in the face of deviancy?

Creativity obsesses
grasps hope that courage
will annihilate the beast,
that resourcefulness
is all it takes to overcome –
Hold on!  it cries, nestled
deep within the grief –

Oh, you think you see me,
but I assure you, my friend,
you do not – I am rebel,
lost in isolation, vulnerability
fantasizing revolution –

Resolve trapped between
the exaggeration of infinite
possibility and the unremarkable
defence of compulsion to survive –
thrive even, if spirit was not
so aghast at current setbacks.

(Image my own)

Harmonics

6:30 a.m. alarm sounds.
“Time to wake up!” Compliance commands.
“Just a little longer,” Sensibility suggests.
Guilt, like an incessantly annoying child
tugs on Conscience:
“Come on; there’s lots to do!”
Body does not respond.

Sleep wins
and dreams come:
homeless,
relying on friends,
no food,
backed up toilet,
children’s wide eyes
fearfully imploring:
When is this all going to end?
Guild propels a return to consciousness.

8:25 a.m.
“Up and at ’em! There’s a good soldier!”
Compliance attempts to be chipper.
“There’s really nothing more important than rest,”Sensibility suggests.
“Can’t lie in bed all day!” Guilt counters.
But body is MIA.

Dreams resurface:
Setting up house in a thoroughfare
people coming and going, oblivious to intrusion
co-workers indifferent,
eyes scolding – convicting…
Guilt mutates to rage,
Body chokes, gasps,
reaches for inhaler
sucking in desperate air.

11:11 a.m.
“That’s it! Up you get!”
“No! No! Rest is needed!”
“The day is wasted! There’s no getting it back!”

“Silence!”
A new voice emerges.

A collective intake of breath.

“Breathe,” comes the message. “Just breathe.”

A unified sigh.

“And breathe again.”

Tempers cool, and emotions begin to settle.

“What’s going on?” Guilt wonders.
“Just trying to stick to routine,” Compliance defends.
“It’s always been this way.”
“But she’s ill now,” Sensibility adds, “and there needs to be concessions.”

“Breathe,” the voice reasserts, and all sigh again.
“Just be in the stillness of the moment.”

Stillness has no voice.
Its language is compassion and infinite,
infinite wisdom.

“…and surrender.”

Compliance sobs with the release of such enormous obligation.
Sensibility gratefully gives over the burden of responsibility,
and Guilt…well Guilt is little,
and happily snuggles up to Unconditional Love.

“There, there,” Voice soothes. “Isn’t harmony so much better?”

Body concurs and rises out of bed.

(Harmonics first appeared here September 2014, five months after illness left me bedridden. Image my own)

Discord

Does illness have a voice,
and if so; is it melancholy,
or dark and dank, divulging
deepest despair, or revealing
a vileness of nature?

Discord creeps along my veins,
disrupts muscles, systems failing
under the oppression –
“Stay strong,” friends counsel,
cannot hear the gathering storm,
feel the heaviness cloaking me.

I am not myself, but then;
who am I? Is disease a mutation
of the original sin – punishment
for fatal sins, or redemption
wrapped as trial – the whispers
gain clarity – I am faltering…

(Discord originally appeared here May, 2019. Image my own. Living with chronic, often debilitating disease, is an ongoing challenge. There is no cure, no end in sight, and yet, we must go on. This is for my fellow warriors, wondering, some days, what it is all about.)

Rebirthing

It came in the peak of summer
that most optimistic time, when
sunshine equates with health
and bodies glow with exertion
fit and in their prime – it came

with all the fury of a winter blast
harsh and cold and unyielding –
wrestling me from my complacency
annihilating vibrancy, self-definition
de-leafed, rendering me raw, exposed.

I clung to the darkness, blanketed
against the harshness of light,
the impossibility of sound, or scent –
was de-shelled, ungrounded, ravaged
by volatile nerves and misfiring impulses

praying for the certainty of death…
but it is spring that follows winter
and in time, restlessness set in –
the dogged whine of hope willing
my mind to stretch, my body to try

spirit, tired of withdrawal, pushed
against the wall of dysfunction,
bolstered by a shifting acceptance
found roots in an unspoken faith
and I felt possibility, like a tiny sprout

reaching for the sunshine,
ventured out of my cocoon –
still alive! Redefining purpose –
still precarious, highly vulnerable
but optimistic for the return of summer.

(Rebirthing first appeared on One Woman’s Quest II March, 2018. Image my own)

Not Dead Yet

There is safety in apart-ment living;
would corral the little ones, declare
responsibility, obligations as a mask
for this self-banishing compulsion…

except that I am lying prone, exposed –
brains spilling onto concrete – shadows
revealing the darkness of my condition,
hopelessly locked in physical inertia.

I am an unwitting contributor to
scientific (and pseudo) probing:
audacious autopsies pronouncing
conclusive evidence of motives.

Too polite (and weakened) to deflect,
I submit, demonstrating complacency,
sacrificing autonomy; fail to assert
that it is I who is taking this life test.

And, by the way, am passing quite
adequately, which defies all rational
diagnosis and prognosis, and serves
to reassure me of ultimate success.

(Not Dead Yet first appeared here June, 2016. Image my own.)