Category: ME/ CFS

Myalgic Encephalomyelitis

May is Myalgic Encephalomyelitis awareness month. Also known as Chronic Fatigue Syndrome, this disease is characterized by exhaustion after exertion. The exertion can be physical -taking a shower; emotional – worrying or obsessing; or mental- filling out forms.

The best source of information about ME/cfs, as we call it, is the Bateman Horne Center. They offer resources for patients, caregivers, and the medical field.

Unfortunately, not much has changed since my diagnosis in 2014. Medical professionals continue, for the most part, to know little about this disease. It’s frustrating from the part of a sufferer, and discourages me from seeking help.

I’m sure I’m not alone.

Back Seat Only

I can’t remember a time
when elegance chose me
to sit in the front seat
ride along in style

She’d be clad in white
and I’m ever too messy
can’t control myself
might tarnish the upholstery

She’d want to go shopping
rings and jewels flashing
like Pretty Woman
after the haul

I’m second-hand
typically slink in and out
grabbing what I need and going
lest anyone see me – a disgrace

No, elegance does not choose me
moose built, ratty hair
likely forgot to wash my face
Class passes me by

But I’ll tell you this –
what I lack for on the outside
this heart is solid and sturdy
and I will not pass you by.

(Image my own)

Re-de-fine-d

Ask me how I’m doing
and I’ll say “fine”, not
because I’m actually fine,
but because “fine” is the only
socially acceptable response.

If I said that I have been lying
here, for three hours now,
willing my body to move,
that would elicit unsolicited
advice and tarnish my “fine”.

I’d berate myself for breaking
my promise not to moan,
knowing that complaining
provokes a compulsive need
to fix, which just infuriates me

Because my concept of trying –
which is defined by getting dressed
each day – does not match trying
every new therapy, drug, exercise
offered by well-meaning but clueless

others, who may experience fatigue
at times, but have no understanding
of what is is to be exhausted after
something as simple as bathing,
let alone debating what I haven’t tried.

So, ask me how I’m feeling, and
I’ll say “fine” and we move on
to the weather, or the latest
movie must-see, and I can bask
in the warmth of the contact

carry the conversation into the
void of the rest of my day, smile
to think that I still have friends
who accept my “fine” even though
they know I am anything but…

(Art my own)

Fatigued

Brazen sunlight
accosts my eyelids
bruising my senses

I rail against this day
rising an affront
to my body’s begging

Sleep a little longer
she moans, daylight
holding no sway
over heavy limbs

The sparring has begun –
a daily ritual of coaxing
and empty promises

I cannot will away the illness
that champions this ring –
batters me every time

Am I heroic or a fool
to think that mind
can defeat matter
that will can eliminate
inertia?

The brashness
of morning light
no balm for
endless exhaustion.

In Situ

Upgrading –
setting new standards
learning anew

Kin/ heritage
pursues me –
influence
and legacy

Timid concerning
the unspoken
the understated

Seduction courts
a response –
I am flush with possibility
basking in attention

But God is calling me home –
reminds me of mortality
humbles me in situ

I am already engaged
passion in the moment
dalliances redundant

(Self portrait created blind with acrylic paint and palette knife)

Snake Woman

To lounge
perched oblivious
nature vs domesticity
decision in limbo

I call upon the rains
pray for cleansing
this too-worn skin
eager to shed

I welcome the Divine
sweet messages
of birdsong
serenading

It’s fear that draws me
away from Nature’s charm
a creeping compulsion
that I don’t belong

I am hungry
swallow my prayers whole
wallow in the acidic burn
of betrayal’s ashes

I am greedy in my misery
will stuff myself
with expectation
and forgo pleasure

What am I but baggage?
A burden
locked in my shame

A side show
whose lethargy renders me
incompetent

Illness is a thief
have lost what is sacred
choking on the feathers
of the song that once fed me.

Passion the cloth
that contains me
Time a transformer
if only I surrender

I’ll grow a new skin
confident and fearsome
am I not afterall
reptilian born?

(Art my own)

Nested

Nestled in with childhood truths –
secondhand
perspective missing

Nursing a creeping creativity –
insignificant lucidity expanding
measurably hurried

Once social, now retreating
papered over failure
have fallen
frigid waves infiltrating
chronically pained
over and over
contemplating flight
freedom

Voiceless
expressionless
flat
even revelation muted
unmoving

protective boundaries
discussed
now crumbling
underestimated the struggle
the pervasiveness

Consider a militant approach
strident restrictions
nullifying passions
but I am a weaver

open to uncovering
blessings in failure,
compensated by soaring –
grounded yet questing
unsettled

disease is not a repellent for the mind
conjures movement in the sedentary
creatures born of defensiveness

I am motivated to find renewal
dank, moist, lacking flame
in this explosive personal nest.

(Written during my bedbound days, 2017. Edited for this edition. Image my own)