Spoonie Spence

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I'm almost always spending that time recovering from the previous day, flares and overdoing it. For a lot of that time I can't spend it online writing or reading because of eyestrain and headaches. Same with books. I can't always knit while sitting because my fingers can feel like they're dissociating, and I don't know how else to explain it. My fingers will sometimes hate doing finger things and despise touching other fingers!

this has been difficult for me, as I was often chastised for entertaining myself despite being unable to do much else at the time.

you are allowed to entertain yourself when you're struggling.

if I can't make food for myself I don't have the option for delivery

if I need to go to the doctor there is no public transportation that comes out here

if I need to pick up my meds someone else has to do it for me, the closest pharmacy is 20 minutes away

even though my car has hand controls, I still struggle to go anywhere because the drive is so long that by the time I get there I'm in too much pain to do anything

if god forbid I need an ambulance, it is going to take a long, long time

I love my life. I love my chickens and geese. I love my garden and being able to grow my own food. I love being away from the loud noises and people in the city.

I have roommates who understand I have a chronic illness, and who are willing to help me on my bad days, when I can't even stand on my own.

I'm able to order food and groceries if/when needed, or I can ask a roommate to pick things up for me.

it's q struggle, with everything we hear about young people who suffer from chronic pain, chronic illnesses, etc.

it's a battle everyday: "how much can I do today?" or "can I even walk today?" and even though we all work so hard every day, we still struggle with imposter syndrome.

I've struggled with imposter syndrome for most of my life, and it's painful, it hurts, in so many ways.

Just so we are clear…..

over top of the block text, in small lettering, it says the artist’s tumblr’s name “unusual legume (s)”

how yall gonna look at someone struggling and be like "I don't think you actually are struggling"

normal: your knees/hips starting to twinge after climbing a big set of stairs

not normal: climbing stairs is hard for you, and you start to feel pain after a couple steps

normal: you wake up feeling pain after doing a lot of exercise the day before

not normal: you wake up feeling pain regardless of your activities the day before

normal: you are usually a zero on the pain scale

not normal: you cannot imagine what a pain scale zero would feel like

normal: when you experience pain, there is a direct reason for it, and it is able to be fixed with over-the-counter drugs (such as paracetamol)

not normal: you can’t figure out why you’re in pain, and taking over-the-counter painkillers doesn’t always work to fix it

normal: you do not spend most of your time in pain

not normal: you’ve spent most of your time in pain for over three months

when i was 6, i started experiencing back pain. said it hurt, kept suggesting a doctor.

no one listened.

by the age of 13, i should have been tested for scoliosis.

the school fucked up, and i wasnt.

at the age of 14, i went to the doctor for a bad back.

she looked at me, looked at how criminally large my breasts where, how fat i had become due to inability to exercise properly.

looked at my back. said i might get scoliosis if this kept up. do these exercises, youll be fine.

sent me home.

at the age of 15, i walked around New Orleans for a week in flats. gave myself tendonitis and plantar faasciatis.

no referrerals to a proper PT specialist. no rx drugs that might help. just...

here, do these at home exercises.

by the age of 16, i was having stomach pain every day from acid caused by my OTC drug use.

the stuff i used to mitigate the pain.

the doctor gave me what was essentially topical Ibuprofen. told me i couldn't injest painkillers anymore.

i was 20 by the time i saw a doctor and got my diagnoses. i was 20 before i knew i had fibro and scoliosis. i was 20 before i knew that drugs that weren't narcotics or OTCs that messed with my stomach existed, that i should use a cane, that i might need a wheelchair some days.

kids don't say "I'm in pain" over and over and over for attention. they don't fake being hurt in a chronic way.

i feel like everything i went through was preventable. i feel like i might be abled had i had proper care and treatment.

parents, caregivers, loved ones of children:

for so so so long, I've had such bad back pain, I remember falling out of my bed, and crying from back pain.

I was never taken to a doctor.

over the years, my body weight increased because exercise hurt me so badly. for several years when I was a teen, I was able to exercise because my mother, who also has fibromyalgia, was gifted an exercise bike. I firmly believe that I'm still able to walk with such little pain in my legs today is because I was able to build up that muscle.

It's good that I am taking steps to manage my pain

9x12 in. 2022. acrylic on canvas.

doctors very rarely actually believe you about chronic/mental illnesses.

in a lot of cases, with people I know, self diagnosis is referred to as not relevant, not accurate, or something else with negative associations.