you fall down, you have no choice but to get back up.
when you get back up, you lose something; a piece of your strength, energy, will... something. keeping on is not free.

you spent the day in bed. too exhausted to get up. you're so sick of bed. your body feels angry for being so still. you just didn't have it in you to move around today. this is fatigue. it isn't fair. in fact, it's cruel.

there is no feeling good anymore. there are what some poor souls refer to as "good pain days" which is just another way of saying
"I know what it's like to be in such bad pain that you want to die, and I'm just thankful today's pain was at least not the worst it has ever been"

you're on no kind of schedule. it'd be a blessing just to eat and sleep at normal times, with some regularity. you feel like crap all the time. you gain weight and lose muscle. you feel weak and heavy.

lie in bed. peace of bedtime is a foreign concept,  your body aches to be comfortable, and you may doze off for 3 seconds before jerking awake by inconsiderate muscles that don't really care that you haven't had a solid hour of rest in 2 days.

pills are a blessing and a curse. relief and side effects. they allow you to rest and they mess with your brain. you'll get so sick of taking pills and you'll begin to hate them for needing them.

the very best you see in your future is surviving. that's what fibromyalgia is. your job is getting through the days of pain and exhaustion, the physical and mental detriments that come with it. your life is a fight, and you are so, so, so, so tired of fighting. you always, always, always feel you have no more fight left in you.



you're 21 years old and you fondly and bitterly remember a time (not too long ago) when you thought some things in life would just be givens; career, family, adventure, accomplishments.... health.

you're 21 years old and you learn that you get none of the above. you're too tired, you hurt too much, and this disease seems to only get worse... it seems to have taken everything from you

and then it takes some more.

i'm eighteen and
my mind is running away

you're screaming
ranting and raving
but don't know you're
doing it and don't know
that i'm crawling
inside a cave where
nothing can touch me
except wanting to die

you were grumbling after
dinner that i don't talk
to anybody anymore
but you don't know that i'm
not lacking words i'm just
lacking the energy
that it would take to
use any of them

(flashbacks to all the times recently
you've complained i don't love you
anymore. to my whole lifetime of
wondering if you loved me at all)

i'm thirteen and
unaware of my anxiety
associated with existence
usually put in in writing as
"pressure". but you don't think
there's anyone pressuring me

i talk too much to too
many people and have
been hurt before. but
never in that abject
way of it being because
i set myself up for it

(emotions so haywire that i end
up hospitalized over a box of
broken cd cases. now that i
remember it i was rage cleaning
and would unquestionably have
an even worse reaction today)

i'm seven and
having another ocular
migraine even though
i don't know it

(the past as as brittle as the
uncooked spaghetti filched
from the box and wedging
between my crooked teeth)

my memory fails me
whether you steamed
your way through preparing
dinner in the kitchen of faded
herbal wallpaper with words
and woodgrain. if i've been
tuning it out all this time
only to notice recently

("you're just like me" you said today
my seven-year old self thinks that's cool
while my current self is wishing to
deck someone while saying nothing)

today and tonight when intrusive
memories keep coming back is when i
remember that if i don't automatically
see things from your side there will
be a row. despite the fact you have
never investigated my perspective

(you're complaining about how
badly you sleep and how it's my
fault for waking you up at
four a.m. but did you ever stop
to ask why the ******* your
daughter is awake at four a.m.)

"my whole body hurts" you said
having taken some chronic
illnesses for some light grocery
shopping and attend a reception
"so does mine" i said
having taken a dark cloud
with me to work and
a panic attack to the library
"mine hurts worse" you replied
"and how do you know that" i demanded
sweeping my sadness off the kitchen table
"because i just do"

i guess your problem is that you
don't know how to be in pain without
minimizing mine but how hypocritical
when i'm over here minimizing
your pain to justify the fact that
my brain is trying to **** my body

(one of these days i fear what
i don't say will get the best
of me and i will crack clean
in two. start screaming
through doors death threats
ending in quadruple homicide
accompanied by my own
swinging body. it's not that
i hate everyone i just hate
feeling like i hate everyone)

but for now i'm investigating the perspective
so startlingly clear that you never loved me
just did what was required of you and so by that
standard i never would have loved you either

Where does it hurt? They ask.
How badly does it hurt? They ask.
What type of pain is it? They ask.
When does it hurt? They ask.
I’m silent.

Where does it hurt? I repeat.
What do you mean? I answer.
Today? Right now?
In General?
By the quadrant of my body?
Aching pains first?
Throbbing pains second?
How about pins and needles?
Should I prioritize?
I speak.

It’s here, I say.
And here.
And here.
And here.
It’s all the time.
It’s constant.
It’s every moment.
And please, I say,
Please,
Help me.
I beg.

They brush me off.
I’m not dying.
I will not die.
I have to repeat it to myself.
Because it feels an awful lot like death.
But I am chronically ill.
Ill, but not dying.
The doctors don’t listen,
It hurts! I said.
But I’m not dying.
I cry.

It's becoming obvious that the thing I had thought I had tucked away was only playing a bigger game. It was when I thought to jump off the local bridge when I realized it was back and that shook every broken peice of me. I wanted to love "him" so bad but now the monster has made his name a bitter taste in my mouth. My depression makes me replay every mistake  I made with him a thousands time before it reminds me how pathetic of a person I am. There has never been an escape for me. I'm so sick of feeling alone and worthless. Alone and worthless...I was free.

The joint in your hand quaked
Under the pressure of your diagnosis,
Its flame slipping into the air,
While your last puff trickled into left lung.
At first you smoked for depression.
Now it was a cry to God,
A beg for mercy from lifeless feet,
A trip down a flight or two of stairs,
A fall in the shower.

I didn't know how you would walk again without your toes
Knees
Hips.
But I learned your condition is a silent killer -
it started with the smallest flakes of skin,
As Satan lit an accurate match to singe your nerves.

You told me you had MS
And I didn't know why your breaths became frantic,
Or your tears screaming.
"Mean spirited",
"Mouthy sister",
Was what I told my friends.
God was playing jump rope with his spinal cord.
Multiple sclerosis didn't roll off my tongue so quickly,
first attempts were stutters at best -
I had to grow up first.
And while I was lying about your health
You were in agony over your grandmother,
Dead for five years on a stained hospital sheet.

In the end she begged for death,
And we have years to go.

I know when life abandoned me
When dreams and the future slipped away
When the joy and freedom died

I exactly know the time when fear called
When confusion clouded my eyes
When loath lived in my heart

I know when hope and despair united
When tears fell nightly of shame
When love is just another word

The moment when secrets are revealed
The cure of it is nowhere to be found
When I found out of my chronic illness

Some days just feel like
They aren't worth the breath........
Constantly praying,
hoping for strength
Super cape on
Doing my best
But I'm called to the window
Lost in the stress
Thinking I'll fly
Finally at rest
Cause the thought of the darkness
Has me obsessed
Numb on the concrete
Cold to the rest
Flashbacks and spiraling
One last test
Hold on for the sirens
Give in to the light

Someone says mommy
And my head gets right
No flying from windows
Who would I be?
The mother who jumped?
They wouldn't understand me...
And I'd be the one
Who lost in the end
Every moment
They'd have to pretend
They'd have to light candles
In memory of me
But then what kind of mother
What kind
Would I be

So I hit my tea like some hit *******
I crochet anger away
And the pain
I take off the cape
And just give them plain me
Knowing I'm faulted and bruised
Like the sea
Calm but a force
Destructive but life
I give them their mommy
In spite of my strife.....

Loving them

©MV