Tag: living with ME/CFS

On Growing Old

Comfort is where we’ve settled,
a well-appointed existence
with commodities on the side.

I dawdle with grandchildren
casting pink thread for slugs
ignoring the sludge in my veins

while he wrestles with fallen
leaves and closing the pool
and readying for the cold ahead.

Even now, there is no security
no locks to protect against invasion;
we live a permanent transience.

When complacency is threatened
we steel ourselves, steadying
against the pull of anxiousness

telling ourselves it’s all expected
we’ve known all along that life
is tenuous, control a fallacy.

Current upsets prove hollow
and we, precariously plodding,
hover once again at the edges.

Disability’s Dilemnas

Clutter defines my surroundings:
accumulation intended to simplify
only complicates, suffocates.

I am roommate, burden, dependent
confined to a singular existence
no longer lover, wife, companion.

While I lament the past –
ghosts of horrors and indecencies –
he drinks to forget lost dreams.

We have vowed to mend the cracks
carefully secured our footing
and yet our foundations rots.

Is it our over-active need to please
or the cold civility of our interactions
that causes us to withdraw?

My mind drowns me with shoulds
that my body can’t possibly fulfill,
guilt flooding my conscience.

How do we reconcile this distance
imposed by so much tragedy,
right the impotency of loss?

Life rolls on and I with it
humour and meditated calm
wrangling doubt and criticism.

He wears the projections
of my dissatisfaction: unresolved
remnants of old wounds resurfaced.

I can no longer ignore my needs
and reel at the mounting imbalance
grasping for sustenance and equilibrium.

Pulling away, I stubbornly proclaim
self-reliance, hindering progress
endangering self for dubious promises.

These life-altered eyes perceiving
only disappointing, unpalatable options
grasp for an end to this perpetual ache.

I am lost, disoriented, tired
communication clouded by fear
I hardly understand myself.

There is no solid footing on
a voyage as rocky as ours,
no answers to allay uncertainty.

Now is not a time for walls,
tenderness alone will guard our hearts
and patience lighten the way.

Morning Fog

sludge is my body
sludge is my mind
in the early hours

consciousness fights
for breath
awareness

is swallowed up
submersed
resurfaces
fragmented
overloaded

messages chime
phones ring
voices
worlds away

the altered reality
of disability
has claimed me.

 

A Sorry State

Stubbornly, I follow
my desires and motivations
over the edge,  humbly
rediscovering
my sorry limitations.

Calling home, hoping
for a sensible response –
reliable, clear-headed –
(I should know better –
no one like that exists
where I come from).

Miss Vanity and Ms. Martyr
come to the rescue, with
Perfect baby, Spirited baby
and the Despondent One
in tow, along with
adolescent Asperger,
awkwardly incapable
of social intercourse.

Doubtful of their intentions,
certain of their impracticability
and suspicious of neglect
I pull back, angered,
threatening to exert independence;
I don’t need anybody
least of all, you people.

Miss Selfless smiles reassuringly
gesturing for my compliance –
she has everything under control
there is room for everybody –
I climb on board –
surprisingly comforted,
conceding assumptions.

I am embarrassed by my situation,
in need of repair…
Approach cautiously, I warn
it’s a steep state of decline.
My stories, exposed, overlap,
piles of debris cluttering
where hope should dwell.
This is not a place for children,
or the pure of heart.

I feel trapped, but don’t express it.
Ms Forever Up and Miss I’ll Pray For You
smile as if to say:
Don’t worry, Silly,
we’ll clean this up in no time.
And look after the babies?
And look after the babies.

Weariness begs me to surrender,
trust these dubious cons –
too overwhelmed and overcome
to care, resigned to repeat
the drama of the past –
fearing this is my lot.

Dissatisfaction niggles
Don’t give up –
there is more to aspire to
a greater dream to dream
give it time, give it time
and quit driving yourself
beyond the confines
of this current state
of dis-able-ment.

A Falling Out

I would entertain confidence,
but here, on the edge of emotion
(others before self )
I am ungrounded.

I gesture kindness
(a shady, alluring reconciliation)
your heart unavailable
distracted and driven.

Pushed aside, I am
(non-conformist)
ostracized,
still raw.

I ponder relationships
(incensed and violated)
worthy of investigation –
these many sides of self.

Sidestepping social niceties
(I am righteously enraged)
personal indignation
makes for interesting dynamics.

Exile is hurtful,
unacceptable – I look
for a voice – pause –
your expectations a brick wall.

Obligations temporarily overloading,
executive functioning down,
my exterior collapses –
we fall out.

Emotional Pain Dance

A singular activity
suffices not to distract
from underlying pain –
multi-task.

Robotic attentiveness
fails to allay
constant buzzing –
re-focus.

Sidestepping issues
elicits no solace,
unravelling inevitable –
shutdown.

I am trapped
in solitary confinement,
sensory deprivation –
unleashed

momentous force
raging within
boring outwards –
scream

silently, alone,
unheard, unseen,
unburdening –
repent.

Self-pity dead ends,
breathe in life,
suppress negativity –
re-align.

Multi-tasking
ignites purpose,
smacks of productivity –
conceals.

Open To Healing

Open to healing –
delve into the subconscious
create a space for inspiration.

Ignore limited capabilities –
no offerings are meager –
enter with pure intentions.

Embrace new starts
have faith in ability
be spurred into action.

The Self holds the answers,
creative expression is the key.
No expertise required.

The Queen is Missing

She’s not in the kitchen –
presiding over the preparations,
thriving amidst the chatter,
tutting away thieving hands.

She’s not in the classroom –
mastering subjects,
upholding order,
ruling with a charitable hand.

Nor is she at social affairs –
smiling regally,
head bent in rapt attention,
compassion oozing forth.

The Queen is missing –
the poise and grace
that marked her carriage
has vanished without a trace.

Don’t ask the old woman –
tottering down the lane
stooped and stumbling –
she’s not all there.

Her mind’s a trickster,
her ego a petulant child
unwilling to concede wrong –
she’s merely the court jester.

 

Oh, To Dream

I dream of waking before the dawn,
preparing for my day with proficiency,
professionally preened and on the go.

In reality, I see the early light of day
through an insomnia-induced haze,
or miss it altogether, unable to rise.

I will carelessly tie my hair back,
and moan at my image, forgoing cosmetics –
no one will see me, after all.

If I dress, it will be for comfort,
elasticized waistline compensating for swelling,
soft fabrics to soothe the burning aches.

In my dream it is the first day of school,
and I am excited and anxious,
caught up in the camaraderie of the moment.

I awake to the resounding silence of solitude,
no schedules await me, no colleagues
exchanging pleasantries, communal conspiracy absent.

I will pace myself, shuffling
between bed and simple tasks,
a cup of tea, maybe some writing.

I drive in my dream, a shiny red car
in which I glide through the streets
and park with the pride of knowing it awaits.

Its been years since I’ve felt the freedom
and independence of self-chauffeuring,
reliant on the more able-bodied, sharply cognizant.

It’s a rare occasion that rouses me from
this compelled complacency, enough
to venture into the hyper-stimulating world.

Disability has closed around me,
limiting experience, restricting imagination,
until I dream – and am whole again.