#fibromyalgia
I don’t know how to write.
I have no finesse, I don’t understand the rules
I’m pretty sure I used that comma wrong.
I never amounted to anything.
I don’t know… no I know my being too self aware put me here.
There’s something about walking a line that keeps you balanced but I tipped to far over to one side.
My mind is going.
I can feel it.
I’m not sure if I detached too hard or if my mind is just really giving up.
My mind feels silent and noisy all at once.
I know I’m confused but I don’t want to take the time to figure it out.
Am I an imposter? Is any of this real?
Why do I feel like I am floating but not in a good way.
Is there even a good way to float.
I feel high even when I am not.
I have so much to say but no voice.
Even if I had something to say is it important.
Is it the sickness I now carry?
Is it eating away at my brain?
My motor function skills are loose and unsure.
I used to be so confident and steady fast in these things.
Is this man made or has it always been around:
Am I over diagnosed?
Is it this or is it that?
Is it still too taboo to talk about?
Does my anxiety and fibro make you uncomfortable?
That’s funny because it REALLY makes me uncomfortable.
Depression is real.
Anxiety is real.
It’s all real.
Can’t be explained only experienced.
Maybe you don’t like it.
Maybe it’s too negative.
Well it’s my life.
It’s my reality.
I’m not sorry if it interrupts your day just block me.
Where is my brain.
It’s almost gone.
Feb 27, 2025
Feb 27, 2025 at 9:53 PM UTC
Where is the pain?
The better question -
Where is there not pain?
The pain can be everywhere
Or it could be, nowhere
It can be here or there
Sometimes-
Its even here and there
How does the pain feel?
A better way to ask -
What kind of pain is concealed?
The pain can be to any degree
light Moderate InTense
It can be down deep or surfacy
From uncomfortable-
Or just plain debilitating
When is there pain?
There is no other way to ask-
There is pain every single day
Part of the day Some of the day
Any time of the day
In the early morning and late at night
Sitting Standing Moving Stilled
There is always pain
What causes the pain?
What you should ask-
What makes the pain occur?
The pain can occur for no reason at all
Although, there are many reasons-
It can be weather changes
lack of movement–too much movement
Simply did too much
Why is there pain?
That is the real question to ask-
Why is there pain?
This question answers all the questions
The answer is a simple one
Just one word to explain it all
—
FIBROMYALGA
Apr 5
Apr 5, 2026 at 2:19 PM UTC
here, another night
writhing
I should be asleep, comfortable
I should be… normal
instead I writhe
or I lie so ******* still trying to pretend
trying to will it away
inside I am clawing to get out of this body
inside I picture myself flailing, jerking,
thrashing, punching, kicking
I visualize breaking my own bones with how hard I fight the pain
I see it in my mind, I let loose and walk away bloodied, bruised, all cut up… but I won.
in my mind.
in reality I have no energy to thrash.
i lack the spoons to fight,
and this,
is an unwinnable war anyway.
so I lie still.
or I writhe, sigh, and cry.
May 2, 2023
May 2, 2023 at 1:53 AM UTC
You ask me how I am
“Tired”
I say
I slur
You preach your 3 hours of sleep
As though it is a feat
A competition in your mind
I know I have already won
Yet mine isn’t so victorious
I have felt years of heavy eyelids pulled down by black fingernails, the bruised under eyes and lust for more sleep
A weak bag of bones is all I am now
Collapsed at a laugh
Or a cry
My muscles show no strength
Neither do I
Jan 9, 2021
Jan 9, 2021 at 6:25 PM UTC
I internally fight it,
Like a toddler that doesn't think they need a nap
But they're so tired
I know it's coming
I can't even see through the fog anymore
Fighting against my eyelids,
Did I take my pills?
Not that this question ever seems to make enough difference
But, yes
Then begins the mob beating version of sleep
The anxiousness starting in my feet
Maybe if I rotate them and stretch it'll help,
It doesn't
Tingles and tightness running up and down my legs
I search out the coolest parts of the bed
Hips and spine stiffen
Am I in quicksand?
Drowning?
Why is it so hard to move?
My shoulders hunch in and up to my ears
Trying to hide from the unseen beating
Someone must have hit my jaw in the night
I wake up feeling
Bruised
Tight
Pain
Everywhere
Turning over
Everything pops and cracks
My bones feel hollow, heavy, tight
Where did all the cartilage go?
I try to stand up
Did they drive nails into my heels last night?
Almost fall down
It hurts to close my hand on the door for support
Was I fighting back?
My legs don't want to work
I forcefully drag one foot, then the other
I must've gained 100 pounds over night
Everything is so heavy
Slowly, painfully,
Trying to break my leaden feet and legs free
Use your abs
My spine pops
Take a deep breath
More cracks
Breathing hurts
Maybe crawling would have been easier
I'm positive bruises cover every inch of my body
The miles long journey from my bed to the bathroom ends
I hobble my way to the mirror to examine the damage
Nothing
No marks
No bruises
No nail in my heel
No concrete
No water
No quicksand
I look perfectly fine
I want to crumble
Oct 25, 2020
Oct 25, 2020 at 9:43 AM UTC
I watch the sunset but it’s tainted blue,
all the flowers are dying and the ocean’s empty too.
The world as I see it has lost all colour and life;
all that’s left is the dead weight of darkness and despair that is rife.
Oct 24, 2020
Oct 24, 2020 at 4:00 PM UTC
Don't touch me by the tender points
It hurts more than a soul can bear
Be gentle lest the pain doth spread
It moves me on to silent tears
Don't judge me as I let it pass
Let me lie down in bed & writhe
And wish for a reprieve of sorts
Or drug that cures me of this plight
How 'd you know how much it hurts
I have faked on a smile and laugh'd
Sanity hangs loose on edges now
If only I could alter the story's draft
Yet, clarity missing from how it ends
Unforeseen misadventures lie in wait
I have learnt to be at ease; with ache
And strife, this life & dragging weight
Jun 22, 2020
Jun 22, 2020 at 2:40 PM UTC
Sometimes
I burn a little inside,
The pain
It strikes me, dives right into my core
I smile a little shakily
Talk a little less
So that others don't fear my sadness, offer sympathy on a platter
Sometimes
I need 8 coffee's
Just to start my day
I can't get up with a spring in my step or just pass the time away
My shoulders are tight
My limbs are heavy
I just want to get on with my day
Sometimes
I try with all my might
Still fragile
With a flicker of hope to make it through today
May 9, 2020
May 9, 2020 at 8:09 AM UTC
Like a wolf chasing and attacking its prey,
my body has turned on me and I’m fading away.
Breathing is harder and my body is on fire,
will this pain and torment never tire?
Feb 26, 2020
Feb 26, 2020 at 2:53 AM UTC
Oh wow lookie there!
What a marvelous creature
If you look closely over there you'll be able to see it
a wild hidden disability!
Usually they are invisible to the untrained eye
But I, Stene Irwiv will show you how you can sometimes spot them!
Now all of them look different, but here are a few examples.
See that buddy over there? I've been watching over this lad for a while now
Notice how he walks slowly almost like a waddle?
He also stops to rest more often than the usual guy
He's not lazy! just sore.
Make sure to be careful and don't touch him unexpectedly!
See my friend here has Fibromyalgia, it causes widespread chronic pain.
It can also cause migraines, mood swings, and memory issues
but remember, since these symptoms are usually invisible on the surface
this disability is often overlooked or even called fake by strangers,
but also doctors! ******
This next one is a doozy
my mate right here looks pretty average on first glance,
but if you look closer you might be able to spot what makes her so special.
This lovely lady right here has Ehlers Danlos Syndrome.
Because of the defect in her collagen,
her skin and ligaments are unusually stretchy.
if you were to touch her skin you might feel that it is very soft and fragile
and when she stands you might see her knees and other joints bend back farther that usual.
She's not just 'double jointed' though,
because of the stretchy ligaments, she and others with EDS are at risk of joint dislocations and chronic pain everyday!
EDS doesn't just cause pain though,
it can also increases a person's risk of ***** rupture or heart problems!
Double ******
Remember though, these disabilities can't always be seen
so don't judge people prematurely.
You see, the person you think is lazy for sitting in the handicapped seats on the bus,
or maybe the person parked in a handicapped spot who appears to be fine,
or even just the people walking down the street,
any one of them might have an invisible disability.
but just because they are invisible, that doesn't mean they aren't real.
I hope you all enjoyed the show.
I'm Stene Irwiv, and this has been Chronic Illness Hunter.
Jan 7, 2020
Jan 7, 2020 at 12:29 PM UTC
Eye lashes brase my brow with a flash of awareness.
Of gravity, of heart rate, with fading memories of mental images and sinking in reality.
Argument insues among the self
"why do I have to get up?"
"I don't know the god **** answer, just get up."
It goes on repeat.
Get up, get up, get up.
Frozen in the warm sheets and safe feeling that just barely lets the pressure fade.
"Why can't I stay in the twilight of REM and awake where my body is light doesn't hurt and my mind has solace?"
"I don't know, just get up."
Get up, get up, get up.
This feeling has lost me GPA points
and this feeling has cost me jobs.
Place my hands on my chest and streach out my legs.
Rip away from the fetal position and complement myself relentlessly.
Get up, get up, get up.
"You're okay" I wisper as though the echo will ensure it's truth.
Deep breathing to irratic breathing to controled breathing.
Rise, wash, repeat.
Get up, get up, GET UP.
Rip the sheets off like a bandaid and immediately stand.
Run to the warm shower.
Pretend it's rain and back to deep breathing.
Complement what a great job I'm doing, getting out of bed, not even crying.
How proud I should be I'm taking care of myself - by taking a shower.
A basic Target pattern, fortress of solitude.
Consumed in the hot artificial rain drops I find another fleeting moment of solace.
Deep breathing, "you're okay."
Let the water run over my shoulders until it turns cold.
Dry off in the shower, take advantage of the ignored greenhouse gas - bask in the humidity.
Look into my dark eyes in the mirror, and ask questions. And hope they are good that day.
Jan 24, 2019
Jan 24, 2019 at 11:30 PM UTC
My hands are shaking
My heart is racing
My feet are pacing
They think I'm faking
My bones turn to stone
It's all I've ever known
My muscles atrophy
Pain got the best of me
It's invisible and deceitful
Failures made me cynical
Solutions are only temporary
This body of mine is the enemy
Inflammation spreads like wildfire
I'm tired of being so tired
Nothing stops the torture, but
I'm fighting like a soldier
My body rebels
It is a prison cell
Trapped in my own hell
Gunshots fire inside
I really have tried
Oct 19, 2018
Oct 19, 2018 at 3:30 PM UTC
I feel as if my head is sliding off my neck like ice cream melting down the cone. I am a witch melting, shrinking smaller as my spine stacks horizontally like shiplap. My body has been refurbished into a pinball machine. Something so tiny as a silver ball destroys so much. It bullets through my body, shooting off like Cuban missiles. I feel the turmoil and chaos seeping through the gutters of this old home of bones. It's like spilled oil sludging through my blood vessels or rats scattering through a sewer, nibbling and feasting away on these muscles of mine until they are frayed like gnawed-on cable wires. At odd hours of the night when time is propelled by the safe travels of breath (that weave in and out like Victorians at a ball) from sleepy children who have yet been touched by monsters or nymphs, whereas each of my breaths steer Odysseus's weather-beaten boat through ten years of treachery. My heavy, melting head slowly sloping like clay off a bust makes its home on my dingy pillow as I lay on a prison bed with cold shackles around my ankles that make my bones shatter into a mosaic as if that could shrink my ankles so I can slip out. I feel like a chained hawk at these hours of the night when I just want to fly until I screech to a halt and flail over the cliff that waterfalls into the ends of the universe. I'd be reluctant at first, perhaps, but what other escape does one have other than to make an autopsist's Y-incision on one's body, then slip out like a hermit crab freeing himself from his heavy shell? Embarking onto a new dimension where there's hope for a radical swap of atoms that don't shape a crippled, deteriorating human is the only choice when you want to live a life other than what you were cursed with. May we then find peace and live as naked souls bearing no heavy shells.
Jul 7, 2017
Jul 7, 2017 at 4:53 AM UTC
Sometimes I believe my body is cursed
When I am burdened with all this pain
Wearing my disability like a bright, red stain
I think ahead to many years when it’ll be worse
When I can’t pick up a pen or unbutton my shirt
Or finish school or start a career
When more and more limitations start to appear
Sometimes I believe my body is cursed
Sep 15, 2018
Sep 15, 2018 at 10:28 PM UTC
Crying on the couch
thinking in circles,
when I look down to my phone.
It has an open, blank, message,
to my drug dealer.
"Woh, how did that get there?"
I close the message.
That was close.
Sep 8, 2018
Sep 8, 2018 at 2:59 PM UTC
"What's funny is" is a ****** statement to be on the receiving end of, it nearly ever ends well.
What's funny is... Often times, most of the time, it's not funny at all. Curious, that we take humorous language and make it into lighter fluid to burn bridges.
What's funny is... The fire is usually a case of arson brought about by projection of in-the-moment feelings, that are fleeting. ******** that we allow ourselves to make them permanent; just mindless masochistic beasts wallowing in the ashes.
What's funny is... The echo chambers we've created for ourselves are actually prisons. Ironic, that we make up walls made out of bricks of unreachable goals, and feel disappointment when we don't achieve them.
What's funny is... Is that the more I interact with people the more I understand why we let ourselves indulge, and indulge, and indulge, to numb the monotony for just one ******* second. Nerve wracking, that every person is just a liability I cannot trust to not become the shackles attaching the weights that drown me.
What's funny is... As hard as I try to remain invisible, I'm forever tracked by a spotlight that blinds me. Insane, to think for one second we are anything but dirt on the ground; let me be dirt.
What's funny is... The numbness, and the pain, are like logs on the fire. Enduring, daily, the pokes and prods to keep the embers going when all they wanna do is die.
What's funny is... I like to dance in the flames but hate being on fire. Truthfully, I aim for embers.
Sep 5, 2018
Sep 5, 2018 at 12:26 AM UTC
So I just did some math.
This week,
according to the numbers,
I've consumed on average
375 calories a day.
Call it 500.
I have no appetite;
I'm stressed;
It's hot;
I'm ill.
This relapse is
not like the ones I know.
It's so subconscious
I'm drowning
trying to fix it.
I tremble as I write this.
I don't know how I get through the day.
But I do know,
there is a mountain
of responsibilities
that I must manage
regardless.
I can't just over medicate
and play games
when I'm stressed.
I can't rest when I'm sick.
I must bare it all,
for both of us.
I'm being crushed
by this mountain.
Jul 12, 2018
Jul 12, 2018 at 7:36 PM UTC
I have a savvy relationship with pain.
Particularly the kind that my nerves play out;
a cruel fiction science is still trying to workout.
Luckily, it's not harmful, it just hurts.
It would be fair to say that I don't like pain.
Being a daily greeter at my bedside table,
the moment I consider opening my eyes.
I would be contradictory, yet fair all the same,
to say that I like pain.
Not the random pain I was born with,
but controlled pain.
That once consisted of self-inflicted
lines of distraction.
Or any distraction that calmed the storm.
Lately my therapist advised squeezing ice cubes,
it surprisingly... works well.
My relationship with pain is involuntary,
self-inflicted or otherwise.
Curse or coping,
It is something I cannot escape.
I have day dreams of what 'normal' must feel like,
yet also wonder if any of us are not in pain.
I wish I wasn't alone in my relationship with pain.
Pain is a feeling, it does not negotiate.
It has driven me to madness.
It has made me want to clime stairs while I still can.
It motivates me and rips me to shreds,
simultaneously.
So when deeper pains come into play,
like the depression that grows within me.
Survival becomes a challenge,
because my mind can only shift around pain so much.
Eventually I will fall.
Literally, figuratively, or both.
You have to be there to catch me,
but I don't know if you're ready.
Jun 18, 2018
Jun 18, 2018 at 8:48 AM UTC
Joints simply electric.
Aware of every muscle.
Feel heavier today,
Did I wake up on Jupiter?
No, just barometric pressure.
Each step a chore;
Try not to let it show.
My mind compensating,
Trying to ignore what the brain perceives.
By then end of the day I am wasteland.
Existence becomes intolerable.
It's times like these I forget,
That my minds on constant auto pilot.
"It's not pain it's pressure"
"It's all a misfire"
"This isn't real."
Without a rested mind,
I melt, I burn, I'm plagued by electric waves.
Harshly remained of what I daily ignore.
Some days I can't do it,
Today is one.
May 11, 2018
May 11, 2018 at 10:53 AM UTC
Perceptions, like opinions,
are often set in stone.
Established like law of the mind
they are easy to create and laced with fallacy.
Even the widest gaze cannot see everything.
Through each strangers eye
a new “you” is manifested.
Thousands of “you” running through their minds,
but none of them are… you.
You are the master of your creation.
Based on your reality
you must adapt to cope with life.
For some the burden is less than others.
The spectrum of content and discontent
lay within the realm of perception,
and the inevitable unknown of external factors.
I once had a perception of self
too highly influenced by those around me.
Whose perceptions I foolishly held on to as truth,
for lack of a better understanding.
I self-destructed into everything
they wanted me to be.
Disingenuous and jaded
I shattered from the lie.
There is an unmistakable familiarity
with rock bottom
that I have grown to welcome as home.
The fall down is vigorous,
hitting the ground hard enough
to knock every molecule of air
out of your lungs.
You lay there breathless hoping that
perhaps this is the crescendo.
Once you decide to breathe again
you can rise up.
From the outside I am not a strong person,
about as average as they come.
I have an inexorable burden
that you cannot see.
Yet another perception
only I can perceive.
What I must do to appear normal
is utterly exhaustive.
Compile daily responsibilities of a “normal” person;
I have to sprint to compete with those walking.
In the shadows I can show the pain
but in the light I must remain in character;
an actor on a stage.
The endless mind acrobatics
twisting and pulling myself to fit this mold.
A mold I was never made for,
so it hurts to obey.
As much as it hurts, I remain silent
about the realities of it all.
Whilst I adapt to my environment,
you call me weak.
As I pretend I am not in pain,
You note I am behind.
I pour my energy into your sorrows
You consume, endlessly.
If I ask for this treatment in return
You point to my condition,
Note your perception of unsuccessful,
based on a reality
you’ve manifested
for me.
My reality is one only I can see
however, that doesn’t change the impact
of the failure nomenclature.
Comparing me to you or any other
encumbers my progress.
Your lack of understanding
is not my duty to teach you.
My façade is not for entertainment
it is for survival.
May 11, 2018
May 11, 2018 at 10:24 AM UTC