"fibromyalgia" poems
I bet you never got to know
That I wasn't always depressed
I was always narcoleptic
Every time I told you I didn't feel good and couldn't see you
I wasn't depressed
I was narcoleptic
That message in March
Where you said you even loved when I was so depressed I couldn't get out of bed
I was narcoleptic
I couldn't help it
People never understand, it's like how you feel when you've been up for days
I was narcoleptic
I could sleep 12 hours
And not feel refreshed, because my sleep doesn't heal me, like it heals you and others
I was narcoleptic
I know I took those stimulants
But they made me edgy and nervous, and I turned into a **** so I didn't take them but
I was narcoleptic
You see, those stimulants, Vyvanse
Made me feel like I'd been up for days but running on 2 pots of coffee because
I was narcoleptic
A man who has been up for days
Is not often the most polite and I hated being impolite so I stopped taking them but
I was narcoleptic
So I spent my days sleeping
Sleeping till noon, then needing to sleep at 3 PM, until 10 at night and then until noon because
I was narcoleptic
Your stepdad said he wouldn't stand for that "crap"
But I couldn't help it, I wanted to see you more than anything and I knew it hurt you but
I was narcoleptic
Not only am I narcoleptic
I think I have fibromyalgia just like my grandmother, who loves you too, I think,
I have fibromyalgia.
Today I'm still narcoleptic with fibromyalgia
But I've found a cure, a mix of two pills, one for the narcolepsy and one for the pain
One pill is designed for nothing but narcolepsy (not ADHD) and the other a narcotic for the pain
You'd have no idea how much better I feel than I did before
You'd have no idea because you don't care to learn who I am
Because I'm not who I was, I'm refreshed, something new, I'm normal for once
Not just feeling bad, not just tired and sore and fatigued, not so depressed I can't get out of bed
Just narcolepsy and fibromyalgia.
Nov 26, 2013
Nov 26, 2013 at 2:29 PM UTC
I went to see her.
The skinny doctor lady.
She tested my blood.
She tested my mind,
While waiting for the blood test.
Severely depressed.
I knew that, of course.
I have known since I was nine.
Just confirmation.
I told her my pain.
That all-over, horrid pain.
Everywhere. Always.
Fibromyalgia.
Silent, Invisible Pain.
It makes so much sense.
The blood tests came back.
Her drawn-in eyebrows furrowed.
I'm diabetic.
She looked so worried.
I am nearly anemic.
What else could go wrong?
Dejected, she said
I can't have children. Ever.
I am broken now.
Invisible pain.
Emotional. Physical.
No death to stop it.
Sep 13, 2014
Sep 13, 2014 at 12:29 AM UTC
A fire ignites
Inside my very ******* self
Pain unjulates
From each nucleus
Of every single living cell
Out through my tattered bones,
To my skin
That burns to the touch
My sinews
Feel severed
The pressure from each step
Shoots electricity up through my spine
The release of each step
Throbs with each heartbeat
I can feel my blood
Rush through my veins
And even that
Steals my breath
My tread
Breaks tempo
With a limp
I drag my throbbing feet
Weighted by exhaustion
And hours of constant
Vibrating hurt
The doctors say it's in the neurons
Of my brain.
They misinterpret
Touch as pain
So I live in constant
Chaos
Wondering if there will ever be a day
Where my cells will silence
And I will find some relief
May 19, 2013
May 19, 2013 at 7:54 PM UTC
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.
Nov 4, 2016
Nov 4, 2016 at 5:34 AM UTC
I felt my body falling into deeper pain yesterday.
Like a shadow that drains with sharp and lingering aches.
Like a monster waiting to take its victim.
I'm where sleep feels so close and so much further.
I can't sleep or stay awake and it's torture.
I'm trapped.
I find no comfort.
I have no escape.
I'm my bodies enemy.
My mind is heavy and my thoughts confused and blurry.
I'm less of me today.
Even though yesterday I was less me.
Today I'm lesser me then I've been in weeks.
I feel depressed and frustrated.
Frustrated with my mind, and body.
Today is a reminder why yesterday was better.
Even though I was tired and my back taunted me with its nagging wide spread hurt.
Today is more.
And I am less.
Uncomfortable, unhappy, and unable to exact my discription of this curse.
Fibromyalgia's friend.
It won't let me go.
And Fibromyalgia's enemy.
It won't let me go...
This is me.
This is not me.
I'm but a shadow of me ninety percent of my life.
Feb 16, 2017
Feb 16, 2017 at 4:05 PM UTC
Fibromyalgia, microfibral mania, Malaysian phalanges making
fibrous writing utensils used for playing fetch with Fido.
The point is moot.
May 14, 2015
May 14, 2015 at 11:32 PM UTC
Sleep didn't quite find it's way to me last night
I felt crushed by nothing but a great deal of pain
Aching all over my body from my head to my toes
Beginning to feel like I'm going mentally insane.
No way to escape these hurt feelings so I'm being told
No cures, no instructions or any such easy ways out
Doctors aren't particular or sure on how this will end
No such clues or any directions to what this is all about.
Suffering from morning through the middle of nights
Affecting my mind, my body and taking over my soul
Extremities malfunctions and the stinging under the skin
Causes me to cringe unwillingly and to lose all control.
Loss within myself because of the endless pile of sorrow
Gratitude for the good life ends with nothing but grief
Fighting this battle and all the fictitious stories of hope
Grasping for any moments that spell any signs of relief.
Jun 7, 2014
Jun 7, 2014 at 7:47 AM UTC
Fibromyalgia is a chronic muscle disorder characterized by widespread pain.
My mother's caramel hued skin has transitioned
to a much darker shade. Strands of hair gracefully
fall from her scalp as feelings of
agony and helplessness replace her
jocund spirit, destroying the essence
of who she once was. Her embodiment
deteriorates alongside her crumbling flesh.
Veins bulge underneath her skin; knots form
below her kneecaps; misery creeps up her spine.
As stridulous moans escape my mother's lips,
I can only offer sympathy. This disease latches on to
anyone within it's reach -- not only targeting
victims but their families as well. Like a predator,
fibromyalgia seeks to control every aspect of her
being – passionately tugging the affected between
the struggle to persevere or succumb to its' insanity.
Jul 18, 2016
Jul 18, 2016 at 1:38 PM UTC
You only get one body,
and that body defines what you can do.
You only get one body
and oh how I wish they were tradeable too.
There's a ninety percent chance
I'd trade with you.
Allow me to clarify that
I am not sick in the least.
Just try to understand my pain, please.
The doctors told me that I have
Fibromyalgia- a musculoskeletal pain
with no cure, only temporary escapes.
They also say my skin tissue lacks
the ability to properly connect-
leaving my skin mottled and easily bruised.
I have scholiosis.
My spine is susceptible to twists
and contractions-
pinching the nerves between each vertebrae.
As I write this,
my neck... the bones are deteriorating.
I have started my adventure now
and I am finding joy wherever I can
because I know
I am destined to be crippled, my friend.
Not only has the doctor
given me a clock.
He has offered me a challenge.
At least I know what I'm in for,
and I accept.
Sep 15, 2016
Sep 15, 2016 at 11:12 AM UTC
Ice pack pillows...
So many and so close like skin to my skull.
Pain so vicious that my bodies aches from fibromyalgia are numb.
Any scent is like an attack, pounding my head...
I have no strength to fight back.
My stomachs tired too...
It refuses to hold any food.
Light is like lasers set to explode.
And moving...
Moving causes silent tears for fear of adding sound...
I'm in a world of torture, only one with severe migraines knows.
With prescription relief comes a side effects pain...
Thought through carefully it's worth the trade.
One morning or day gone...
Maybe even a few...
Before comeplete comfort sits a dull draining day...
After each tormenting migraine I find a sweet appreciation for my every day physical pains.
Nov 3, 2016
Nov 3, 2016 at 5:55 PM UTC
You’ve heard of us, I’m sure. We’ve been corrupting the living since life was old enough to be corrupt.
We are why humans scrub, rinse, wash up, wipe down, and die.
At first, we were just travelers. Useless wanderers floating through space and content with having no purpose at all.
Until one of us bumped into, and sunk into, something with a dangerous potential. Something intricate with all sorts of systems that would soon be tainted with this single bump.
It was nice, I guess the first one might have thought, To feel more important than this thing with all of the potential in the world. To corrupt it.
Not all of us damage humans for the sport of it, like Arenavirus Infection, Fibromyalgia, Cryptococcosis, Tuberculosis, Cancer, and many others do.
Some are just afraid of humans. They attack them because they are afraid of the medicines they create, which doesn’t make any sense because in doing this they singularly are more likely to be killed.
Most do enjoy making peoples ill.
The more competitive ones have made rules.
Alright, they’d say, Next one to swim in this lake will catch me.
If they aren’t wearing a coat, and it is below sixty degrees Fahrenheit, their defenses are down and they deserve us.
Well, they shouldn’t be so vain as to purposefully tan their skin.
More points to whoever claims the one with the feeble immune system.
I however, do not feel that it is necessary to attack the humans. We are, after all, supposed to be wanderers.
I am Influenza. I wholly, have killed or touched millions of humans.
I singularly, as .253667IFL, have never touched any object at all and probably won’t for thousands of years to come.
And while I have made this decision and while I don’t believe that it is necessary to attack humans and while I have the potential to, I do not feel sympathy toward the humans.
It is not because I am unlike them, in fact it’s just the opposite.
If there is anything Earth’s Illnesses can agree on, it is something that we have all learned in our travels:
That it is impossible for one to pity something that shares the same potential as them.
Mar 22, 2016
Mar 22, 2016 at 1:14 PM UTC
Today the skies were sunny and
bright, but not for me.
People were out walking in the
streets, I had nowhere to be.
Somebody was singing karaoke
while hearing a favorite song.
I couldn't seem to do anything
right, without thinking wrong.
In the garage I found one of my
granddaughters favorite toys.
Then I found myself becoming
sad because I have no boys.
My wife saw something on sale,
she said I would like this honey.
I kept saying to myself, we just
don't have the money.
Usually I'm the one who could
tell the best told stories.
Nothing seem to be right anymore
since fibromyalgia stole my glory.
May 2, 2014
May 2, 2014 at 12:54 AM UTC
Our world is hell
We cannot deny
Disease lives amongst us
It thrives within each soul
Popping up with just a sigh
Once upon a time
Our world was much more calm
Our air was clean
Not infiltrated with so much pollution
Our wonderous knowledge
Told us we had to strive
Make it better!
Now look what we have done
Disease popping up
All over this nation
Fibromyalgia metabolic disorders
Cancer of many kinds
Cardiovascular disease
Diabetes, digestive disorders
Liver disease
The importance of nourishing the brain
Anthrax
Diet and recovery seem an impossibility
Osteoporsis
Dem bones: Do high protein diets cause bone loss
This could drive one insane
What is the cost
Insanity some find to be
The gravy train
Human knowledge may have turned
This world into hell
Pray death will bring
A clean slate
To this humanistic spell
Aug 22, 2017
Aug 22, 2017 at 2:35 PM UTC
Fibromyalgia
Fibromyalgia is an illness that often besets
Women and men who can not help themselves
It's a syndrome that causes great pain and distress
It even causes its victims to feel overwhelmed
And cold damp weather only increases the chance
That muscles will cramp and increase the stress
And though one looks the same at a glance
They really are in pain that no one would guess
Often people are misinformed and act so curt
And expect us to address everything at top form
When each small movement inflicts such hurt
That often we just can't even meet the norm
I, for one, am tired of people telling me
Get out of bed and do your part
When I really want to depart and flee
And hide my sick and broken heart
They can't see I'm trying my best
To hold onto some kind of life
But all their scoffing makes it a test
When will I be done with this awful strife
For me, each day is a long hard trial
I sometimes find life hard to face
I often think it's not worthwhile
Running this kind of pain-filled race
Mar 12, 2020
Mar 12, 2020 at 3:25 PM UTC
Looking at me
I look healthy and fine
But you don’t understand the pain
I live with in the inside
The burning
The flare ups
The constant battle of pain
I wish I had a day without this battle
I would not take it in vane
Just because I look ok on the outside
Doesn’t mean I’m ok inside
But that doesn’t define me
I take the day and pain
One step at a time...
Mar 24, 2018
Mar 24, 2018 at 8:38 AM UTC
The meal is lovely, yes,
I’m glad we came here.
The questions are arriving, not too heavily,
but drip-fed between mouthfuls.
Chew. Answer, a ladder of sentences.
Maybe I should be telling you
about the seasonal affective disorder,
or the fibromyalgia that attacks my back.
You’ll need to know this going forwards,
I'm sure.
You have already mentioned depression,
the gurgling storm in the brain.
I nod, offer empathy even though
I didn’t mean to.
The meal is lovely.
There’s a cherry birthmark blotch
on my right thigh you’ll see.
I don’t say this. It’s not appropriate.
We hide things
so we can make a game of it later.
Perhaps you play the flute,
collect comic books,
are an expert at knitting.
Weeks to trickle by treacle-like,
facts set to spring up as flowers.
Sip of drink to shut me up.
Our truths floating like shuttlecocks
across the table.
The meal? Yes, it’s lovely.
I am thinking of later, of tomorrow morning.
Feb 16, 2019
Feb 16, 2019 at 7:25 PM 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
I'm buried within the madness
that collects within every
breath...
Realizing that with ever exhalation
that it feels like your last weave.
But its not, its just another motion
of an illness that others never see.
But judge,
I have fibromyalgia.
And every breath is woven in pain.
Feb 10, 2018
Feb 10, 2018 at 5:09 PM UTC
I am a depressed, anxious insomniac who has never to her memory gone an entire day without being in physical pain. I am a migraine-afflicted, allergy-suffering, chronic-pain-having, fibromyalgia-surviving, lonely beast in search of someone bright enough to give what is left of my heart to. But like a phoenix, I am risen from the ashes day after day, sustained by the belief-the faith that one day I will be taken away from this agony, and never again will I feel the pain I do now. I survive only by the hand of an almighty God, who has promised perfect peace if I only speak to Him day by day.
Jun 10, 2017
Jun 10, 2017 at 10:40 PM UTC
It is not pretend
it is not fake
it is not in the mind
it is in the body
it is real it
is there
do not call me a liar
do not say I am faking
you do not understand
therefore you cannot accept
Our nerves are always hurting
are muscles are constantly seizing
are bones constantly swelling and in pain
These are the signs remember them
Some of us can walk some of us can move some of us are stuck some of us cannot
some of us have it easy meds are helping some of us are not so lucky meds are failing
For me I'm the ladder I am stuck I am in pain meds do nothing
This is just how it is this is how it will always be
Remember this condition is real and it is not fake
Scarlet rose
April 13th 2020
Apr 13, 2020
Apr 13, 2020 at 9:56 AM UTC
that day
My alarm goes off, brainfogg turns on
Just 10 min more and i’ll feel oke, eeuhm not stop telling that lie to yourself
Get out of bed, get dressed
Black spots everywhere, just sit and don’t faint
Keep telling yourself you’ll be owkey
Wondering should i visit the doctor? everything hurts i don’t think that's normal
Ow right i have fibromyalgia
They tell me i have to accept that, that you have to learn to live with it and don’t fight it
Yeah tell me i’m depressed
Easy said isn’t it
You can go home just made a lot of money for what ?
For telling me i’m never getting better, just hope you don’t get worse
For telling me i’m depressed and i just have to accept
For telling me to change my hole life; stop working, stay to the same routine but when i ask you how that is even possible without money etc you don’t have an answer
How can i accept something i never wanted
How can i accept something that makes everyday so ******* hard
How can i accept something that hurts me all the time
It’s like telling someone to accept their abusive partner that hurts them everyday
Don’t tell me i need to stop fighting it!! because the moment i stop fighting it i’ll stop fighting the urge to make an end to it all
And don’t compare my pain to a pain you had when you walked for hours and whit a heavy backpack and your shoulder started to ache and you could think away the pain.
I dont have the energy to think away the pain every ******* second of the day
But you are right about one thing: yes i am depressed i’ve been that way for a long time now
But you were the first person to ever tell me that. the first person where i dropped my act and you didn’t do **** about it.
I told you i rather wanted to be terminally ill than to have this and you just told me to accept it
Jun 10, 2018
Jun 10, 2018 at 6:40 PM UTC
The doctor tells me "it's Fibromyalgia"
I've never heard of it before
But I think finally I have an answer
For all of my pain
But it doesn't take me long to decipher
It's something that they can't explain
Do they think that I'm insane?
They don't understand it
There is no cure
It's a curse not an answer
And I don't know how much more of this I can endure
They give me drugs that have little effect
These pills are addictive
They have nasty side effects
But at least they help me sleep
They tell me you just need to do some exercise
Then you'll be less tired
Have less pain
Then you'll get better
They make me feel like I'm lazy
They tell me you just need to be more positive
Then you'll be less depressed
Less anxious
Less stressed
Then you'll get better
They make me feel like I'm crazy
Sep 29, 2017
Sep 29, 2017 at 7:04 AM UTC
My nerves always crying
My muscles always screaming
My bones always aching
Be sensitivity
the pain
The discomfort
the agony
The source of my pain fibromyalgia
The source of my pain my spine
Everyday a hardship
Everyday more meds
Everyday no new answers
Everyday lack of Truth lack of help
People see me and do not believe
people hear me and do not understand
This pain cannot be seen
this pain cannot be heard
it can only be felt by those who are forced to deal with it
By those who suffer it
Jul 8, 2021
Jul 8, 2021 at 6:54 AM UTC