Holidays with chronic illness

I can’t even begin to explain how hard the holidays are with a chronic illness. Whether it’s not being able to eat anything anyone else is eating, to having over stimulation, and you know my personal favorite having to prove to family I’m actually ill and not making it up. As the holidays approach know you’re not alone I’m right here with you.

you're a note I don't need to keep

dear Em,

I used to mark the days
by four one eighties
under a forty five
then I got creative
I sectioned weeks
in heart beats
so I could hear another
not feel so lonely
I got lonely anyway
I etched deep cracks
in half hearted hopes
that maybe this month
wouldn’t end broken
I ran out of wall
so now I just throw them all
into an uncountable pile

I can no longer tell
if I’m counting down
to a day I see you again
if I’m counting days
that I’ll never
scrub or sweep

I wake up
I’ll forget to shave
sometimes leave without
brushing my teeth
my jeans fail the sniff test
my shirt fails the sniff test
I’ll wear them anyway
my stomach rumbles
shaking welcome hands
of my desk time clock
my stomach rumbles
while I take nicotine
coffee hour
because I forgot that
lunch exists
my stomach rumbles
when I get in sheets
repeating your name
with the intention
of meeting with you
in a dream I can finally
get some sleep in

I keep notes of notes
to remind myself to check notes
notating all the necessities
all the normal functions
of survival I can’t remember
to make a checklist of
but I never need a reminder
to write you a poem
whisper your name when
no one is around because
it’s the closest thing
I have to smelling
your shadow sunburnt
onto the parking lot
on my curbside recliner

I’m numb to years now
the months fracture
chornic cardiac miranda rights
the weeks slip and pop
records with mute needles
the days, hours, minutes, seconds
those moments when time
stops being a number
when time becomes
rinse and repeat,
circular paste motions
six vertical buttons,
eight blue loops,
a blueberry muffin,
a turkey sandwich,
a preheat to 450°
it’s when seconds become
the last memory I have of you
how hot your fingertips were
as they slowly slid from my heart
how cold my hands were
as they quickly
pushed yours

when today is over
I throw it in a pile
I repeat your name
counting broken heart marks
on the wall until I fall asleep
cuddling with a brand new broom
a wash cloth hoping to wake up
from a dream
that no longer
feels like



anonymous asked:

Sorry but i need to vent. I have a disability that causes chornic pain and every now and then ill use a wheelchair when its offered (like airports anf tourist attractions bc im trying to travel as much as i can while i still can) bc i sometimes really need it but then i feel weird using a wheelchair when my legs still work. Like my legs hurt so much but i can still use them so i feel guilty like im trying to make myself look worse then i am. Idk. Do you or any of your followers get this.

I understand!! It took me seven years to use a wheelchair outside of the hospital. I chose to stay inside and not go anywhere for a long time because I didn’t think I should use one because I felt my condition wasn’t “bad enough”. It was bad enough to rob me of school and a social life. It was bad enough that I needed to use strong medicines and have multiple surgeries. Why couldn’t it be bad enough for me to use something that would drastically open up my world?

How many part time wheelchair or mobility scooter users are out there? I’m 21 and use them anytime there is a lot of walking and standing involved because if I don’t I risk ending up sitting on the ground wherever I am. Or worse, getting nauseous or light headed and almost passing out. I can now go to the mall or a concert without being in bed for a week afterward. 

The past year I’ve worked really hard on not being ashamed of my body or what I need to use to do the things I want. It is hard as heck and I am proud of anyone else who is trying to come to terms with how your body has been changed by your conditions. 

 But really, friends. Don’t feel guilty for using a wheelchair, if it improves your life than you deserve to use it. That goes for braces, canes, special chairs etc.