In the dead of the night
When there's no one around
Nothing clanking
Or making a sound

That's when the night pains
Begin to creep in
Tortured bones
Aching in skin

Diazepam and codeine
Bring no relief
My sleep is stolen
By the pain giver theif

These are the things
That others don't see
I just want my life back
I just want to be me

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.

Mama always said my body is a temple but if this is a temple then I never want to worship again
I was born into this temple with the foundation already cracked
The ceilings are caving in
The floor boards wail in pain even with the most gentle of steps
I reach for the handle of the front door to get out but the hinges crack and break leaving nothing but agony in my wake
the widow screen is ripped and the wires are sticking out
the glass is either in shards gripping to the windowsill or in a pile on the floor
I can’t get out of this **** temple but staying here is killing me
Temples are meant for praising God but I only want to curse him for trapping me here
I wish I could tear down this place buts its already doing a pretty good job of doing that on its own.
Let me out of this **** temple.

My Cat jumps up onto my lap
I feel sharp pain
my rib goes snap
I cannot move I cannot *****
For in my chest is an awful stitch
My Cats behind is a lil too thicc
For my joints are as strong as a brittle old stick
It’s not her concern
How I wiggle and turn
I’m just trying to put back
That rib that made me go ack

I wake up to an alarm set ten minutes before I need to get up because I never know how long it will take me to get out of bed.

My leg is asleep because at some point in the night my hip did the hokey pokey and turned itself around right out of its socket

But hey, my joint problems make me cool because like a transformer I bend and expand putting my joints back into their place.

See I'm like a cheap Halloween decoration,
Because my skeleton is falling apart at the seams
and if that's not bad enough, the only person it's scaring is me.

My body betrays me
Every day
But can I complain?
What can I say?
If I'm honest,
I've betrayed it myself.

My Wings Fail Mother Nature.

In my world the sun always shines behind windows tainted....  the color of pink curtains draped threw its rays.

Someone take me away from the darkness ....I succumb.... feels so dark.

The walls that contain me are to keep me safe..... with its  dry stale air.... artificial  light .... keeping me from flight.

I need the light...... not just any light... one that shines a special way.....down on our  oceans, sees and bays......the one that shines on the wild.......it defines my purpose so I do not decline.

I miss my mother....... Mother Nature was always able to sooth the pain in my brain..... encourage me to dance.... to sing along.

All this eases the constant shame and for a moment I feel I belong..

She showed me many things  Id never had known on my own.

I learned to swim with her  fish and run with her deer....... she taught me to feel so much,  such love in her heart, she taught me to speak without any words and showed me many of natures cures.

I became addicted to her drawl and now her loss is causing a withdrawal......... like a drug screaming for my all.

Now I have to rely on man...... a concept not to familiar to me..... I suffer in his hands..... suffer so....why cant they just let me go.

Man was the only creature my Mother could not tell me of........ I was only told I was different.... Not like them.....that I would see.

God...I beg to walk in her grass ...dance in her winds...run in her rains...and feel her healing hands.
"I can't get up!"

I do not understand, its not all about this pain.....it is bearable at times when i try real hard......so why can't I get up.....work or play?

I just sit there so quiet as to not even think......?

Can't get up to just sit in the sun?.......... there is nothing left but man out there?.....

Its just "not" the same.

I really do...... as strong as my heart can want to go..... but my legs tire... I can not run.... my wings, to just lift them....how heavy they fell.

I am afraid now as the times I have run well..... in... "deceiving me".... my wings still failed.

God....I can take the pain....all the pain you can give.....It's taking my Mother  from me I can not stand!

I am not meant to sit here and dwell, I do not deserve to be in hell.

To many times I should have died...so many times I just tried.

But you still forgave me.......... I question why....this world is hard and I don't belong....

I cry so hard...for being barred....with absolutely no regard ....such tears I cry knowing  how easy it is for them to just discard my life.

What shame I feel deep inside....

I keep looking to be rescued for a hero to come...but  ....no hoof stomping sounds ......No white horse on my  drive...... it always stays predictably quiet.

I don't think I trust man or ever did....I think they have forgotten me trapped in here trapped in this land.

I don't think I'm going to be rescued or swept away.....I don't think I will ever be that miracle in....

....I am just one of the forgotten who hide inside....no one to speak of...... as they shut their eyes and cast their own lies in order to survive.

I guess no one can lift me from my pain.....no one cares I'm not there......so it really doesn't matter....as if I cared?

I care about my God...My mother and the few that understand....the ones who have helped me because they just can.

It is ok they laugh at my neck in a noose..... its been always abuse.

Never did I disbelieve in you father...... even when I turned by back in anger and said I didn't agree.

I have faith there is reasons for me to be the one...the one to hold the brunt of the pain.....make me responsible for others games.....make me suffer in another name...take on all the shame.

I can accept this but I beg you now....just give me back my Mother somehow.... I promise to move on from this and make you proud.

But my wildness is somehow...more important to me than I could ever tell.................my silent words.....  my language she knows.....just get me out ..........tell me my job is done.

I do not mind dying alone, but until then I need to go, there are things I need to do....people to touch and show the way.

I can not do this when my light is dark....please release me so I can show....that my life was worth this great big show.

I need to stretch my wings and fly again.....forget those who tried to steal my glow.

As long as you and I know who I am....your love will help my wings expand......so I can sore high above our land.

Please let me see my Mother again.

AL

*Living with Chiari Malformation, Ehlers–Danlos syndrome (EDS) and Dysautonomia.