Sickly

I feel like my body is rotting,

disintegrating into ash.

My blood is congealing and clotting.

My bones, like old wood, are too brash.

My organs are screaming for mercy.

They deal with the onslaught each day.

My trunk and my limbs grow more pursy,

until I won’t tell what I weigh.

The poison, I take for its blessing,

with fear of the fallout to come,

in hopes I can change my own dressing,

and find a foothold, though I’m numb.

When daylight will reach me next morning,

all progress I’ve made is reset.

Then, new horrors come without warning.

What hope I had found, I forget.

Condemned to repeat the disaster,

I wake up again out of spite.

Until fate has won, I’m still master

and choose not to give up this fight.

Advertisements

Rebel With A Cause

I woke up this morning and told Weakness to fuck off.

Time for some adventure, though I know I’ll pay the cost.

I’m not gonna listen when my body wants to quit.

I’m a damned good actress. And today, I’m playing “Fit.”

Push until my legs are leaden and my shoulders shake.

Push through shooting pain that comes with every step I take.

I’ll ignore The Urge To Stop and press on till the end,

sure I’ll miss in triplicate the energy I spend.

Focus on the atmosphere, not Physical Complaints.

I’ll do what they’ll do and I’ll not tolerate Restraints.

Come and get me later, Lactic Acid and Regret.

You will have me, true, but you may not come claim me yet.

Set up vigil, Sir Fatigue, and wait here if you must.

I am up and ready, and I feel downright robust!

All you bad guys go ahead and regroup while I’m gone.

But for now, no matter what, this bitch is moving on!

Fine

Yes, I looked fine when you saw me last week.

I looked as healthy as you,

dressed to the nines with my hair high and sleek,

dipping my bread in fondue.

I hadn’t left my own house in too long.

I had a friend do my hair.

The times that I go out are when I am strong.

It took three hours to prepare.

Yes, I looked fine at that wedding last year.

You even saw me go dance,

cutting the rug with my sweet engineer,

caught in our own lover’s trance.

By evening’s end, there were tears in my eyes.

Stabbing pain shot through my back.

I danced with my lover, however unwise.

I knew that I’d have an attack.

Yes, I looked fine at the mall back in June,

smiling and trying on shoes,

drinking my coffee and whistling a tune,

texting friends as I peruse.

I got a new diagnosis that day,

the lesser of two horrid ills.

Some browsing is what held my teardrops at bay,

far better than too many pills.

 You seem convinced that I’m doing just fine.

I’m a magician, my dear.

It’s misdirection, a talent of mine.

Not all things are as they appear.

Phoenix Rising

I’ll feel better next week when my medicine kicks in.

I’ll feel better once I get some rest.

I’ll feel better next week when my therapy begins.

I’ll feel better once I’m not this stressed.

I’ll feel better next week when my surgery is done.

I’ll feel better once I lose this weight.

I’ll feel better next week when the healing has begun.

‘I’ll feel better …’ words I overrate.

I’ll feel better next week if next week will ever come.

I’ll make up a reason if I must.

‘I’ll feel better next week,’ I will chant until I’m numb.

‘I’ll feel better …’ words I seldom trust.

I gave faulty reasons and the words had turned to ash,

dying in a fizzle of a flame.

Now the phoenix rises from a long-awaited flash,

carrying the banner of your name.

I’ll feel better next week, though my symptoms haven’t changed.

I’ll feel better though the worst’s not through.

I’ll feel better next week, for your visit’s been arranged.

I’ll feel better, for I’ll be with you.

Unsolicited

We all really hate when you give us advice.

It just undercuts our attempts made thus far.

We know that you think those suggestions are nice.

But bear in mind I earned each IV and scar.

You don’t know each treatment that I’ve ever tried.

Two decades have passed and I’ve been through it all.

It’s not just your words, it is what they’ve implied.

What’s lacking in wisdom, you make up with gall.

I’m so very glad things worked out for your aunt …

and yes, she had symptoms that sound just like mine.

Your grasp of my illness is naive and scant.

Your words are not helpful; they just undermine.

See, I don’t tell you how to do things at work.

So, don’t think you have any right to tell me,

’cause this IS my job, you magniloquent jerk,

as anyone ill as I am would agree!

Sick, Not Dead

I am sick, not dead.

Remove the rails from ’round my bed.

I am sick, not three.

You must back off and let me be.

 I am sick, not weak.

So let me think and let me speak.

I am sick, not dumb.

Your meddling has made me numb.

I am sick, not nuts.

Your hovering consumes and cuts.

I am sick, not blind.

I’ve listened; please repay in kind.

I am sick, not wrong.

If you would look, you’d see I’m strong.

I am sick, not slow.

Don’t trap me or I’ll pack and go.

I am sick, not lost.

So keep it up, and pay the cost …

for I am sick, not dead.

Don’t make me run away instead.

–for Mya–

Asking For Help

askingforhelp1

Asking for help can be harder than not,

because both cause a pain that is real.

I hate to admit this is all that I’ve got,

and that this is the best I might feel.

askingforhelp2

I’m a young woman and shouldn’t need help

since most strangers assume that I’m fine.

I feel like a dog squeezing out a sad yelp

’cause I realized this body’s now mine.

askingforhelp3

At once, overnight, I became old and weak,

so I didn’t have time to adjust.

Suddenly, I couldn’t chew food, see, or speak,

and into Sick’s midst I was thrust.

askingforhelp4

 A placard at 19: admitting defeat!!!

It’s a thing I was so loathe to do.

I’m now twice that age, and perspective, my seat,

as I look back on what I went through.

askingforhelp5

I so wish that back then, I’d let ego go.

I wish I’d not cared what they thought.

I wish I knew then what I’ve since come to know

and the truth that the future has brought.

askingforhelp8

It’s not a character flaw to be sickly.

It’s okay to ask for a hand.

I’ll get there eventually, slowly or quickly.

Who cares if the world understands?

askingforhelp6

Sometimes I’m weak and I need extra time,

and sometimes I park by the door.

Sometimes I can’t talk, and it’s not a crime,

and some days, just to eat, is a chore.

askingforhelp7

But here, from my seat, in this tower of age,

with the wisdom I’d hoped would shed light,

I see the intensity’s not been assuaged.

Still, to make myself ask, is a fight.

Exercises In Futility

No position I can find will make it go away.

Nothing I can do will make it right.

I just have to watch the clock push hours into day…

through the long, excruciating night.

Sitting doesn’t help at all, nor does it to lie down.

Standing up is quite atrocious, too.

Walking is a bad idea, just like all the rest,

leaving me with nothing else to do.

Doubled over in a ball, I try to soothe myself,

huddled with a blanket ‘round my back.

Rocking to and fro’ I wonder, will it ever end?

Hoping till my brain and heart just…crack.

Should I, to the ER, go, and put myself in line?

I will have to stay and wait my turn.

Triage nurses don’t think I should get to skip ahead

when I don’t have a gunshot wound or burn.

When I get to see the doctor, he comes in resolved.

I know that he, first, made up his mind.

He’s decided I just want a source of heavy drugs,

sure he knows I’m of the addict-kind.

I can see it in the way he stands reviewing charts,

looking at the clipboard he brought in.

Glancing up and over just a bit from time to time.

Convincing him’s a battle I can’t win.

If I could count up the times I’ve tried to start anew,

I’d use all my fingers and my toes,

searching for the doctor who can conquer chronic pain,

one who doesn’t judge and presuppose.

One who doesn’t promise his procedure’s gonna work

before he’s grasped the level of my pain.

One who doesn’t send the message: it’s all in your head,

who treats me like I’ve simply gone insane.

Even on the days that I acknowledge are my best,

constant ache pervades my every breath.

Like sandpaper, coarse in grit, the pain rubs raw my soul,

leaving me romanticizing death.

Chronic Illness Blues

Nowadays, we’re everywhere: sickies who look fine.

With a glance, it seems that there’s no reason we should whine.

But if the world could have a trial living in our shoes,

they would find, most certainly, they had the chronic blues.

Friends and loved ones try and try, but never understand

the challenges and energy our illnesses demand.

It’s because we look just fine. They cannot see what’s wrong.

Only test results can prove we’ve been sick all along.

It’s hard for us, who lead sick lives, to say we’re not depressed.

We know the hell will never end, “not terminal,” at best.

You can’t forget it, any day; you never get a break.

It goes on while you’re sleeping, it’s here when you’re awake.

Decades pass, the illness lasts, and yet we trudge on through.

People sometimes say, “You’re brave.” But what else can we do?

Illnesses and hospitals, insurance and blood,

urine samples, EKGs, and feeling, still, like crud…

plastic tubing, IV kits, patient charts and scrubs,

pumps and poles and stools on wheels, and purple, nitrile gloves,

pharmacies and sharps containers, clipboards, tape, gauze pads,

waiting rooms, referrals, too, and still you’re feeling bad…

ugly gowns they make us wear to access us with ease,

meaning when we do stand up, we’re flapping in the breeze….

The space they leave on intake forms is laughable at best.

I always have to find more space so I can list the rest.

Those mere four lines aren’t adequate to splay my sordid past.

I require plenty o’ room for the horrors I’ve amassed.

I never know from week to week how good my health will be,

so many times the best I do is plan to wait and see.

I don’t want to be the one who ruins family plans.

And if they want to still go out, I would understand.

But they won’t, which means I feel a guilt (that I don’t need).

So I suggest it every time and someday will succeed.

But though I get frustrated, and I wish they understood,

I hope they never will (the way that only sickies could).

Tomorrow I may find that I can’t get up out of bed.

My symptoms overlap and get all jumbled in my head.

I try hard to keep them straight, the things to ask my doc.

I’ll see him soon: tomorrow, well, that is, if I can walk.

Life for us is day to day, filled with good and bad.

It makes me much more grateful for the healthful times I’ve had.

Enabling The Future

A Global Network Of Passionate Volunteers Using 3D Printing To Give The World A "Helping Hand."

Everywhere Once

An adult's guide to long-term travel

the poet's billow

a resource for moving poetry

James Windale

The official blog of James Windale

Shadow and Clay

Adventures in Attempted Authoring

Writing Madness

blog of author charlotte cyprus

Catpaws Cafe

Random musings from my virtual fountain pen

Always Rebecca

A Mathematician attempting to swim in the ocean of writing.

Shanan Winters

Interpreter of Inspiration

La Belle Epunque

The Blog of Artist, Poet and Author, Alira Alomien Rosi

Pickled Words

a place for pickles, a place for words

To Tilt With Windmills

countless worlds at your fingertips

Red and the Big Bad Wolf

The story of me - Red living with Myasthenia Gravis or the 'Big Bad Wolf' as I prefer to call it

Wrong Side of the Glass

My Journey Through an Undefined Illness

One Fierce Mama

Unapologetic, uncensored, opinionated, and a mother.

Autoimmune Warrior

Life with Invisible Illnesses

the myasthenia kid

Life with possibly undiagnosed myasthenia gravis, diagnosed severe autonomic dysfunction and ehlers danlos syndrome

Experimental Fiction

"Come with me, and you'll be, in a world of pure imagination" Willy Wonka, 1971

Myasthenia Gravis Blog

MG Mind, Body & Soul Blog

%d bloggers like this: