muttren

[muttren]

Just one day out sends me to bed for three days of recovery.

[muttren]

having a constant background level of pain is so weird like. it hurts but honestly i barely notice it anymore unless it gets significantly worse or better.

laid down just now and realized how much less my knees hurt when i barely noticed they were hurting before. having a chronically ill body is just so weird

[muttren]

i have a disability. more specifically, i have a rare genetic condition called camurati-engelmann’s disease, or CED. it is also known as progressive diaphyseal dysplasia (PDD). it is an extremely rare disorder and only around 300 cases have been reported worldwide.

i figured i would make a post talking about it, in an effort to not only educate others, but to possibly connect with others who suffer from it as well. i apologize for the longer post but please this moment to learn about my disorder.

CED is a skeletal condition that is characterized by abnormally thick bones (hyperostosis) in the arms, legs and skull. the overgrowth in bone causes bone pain, muscle weakness and extreme fatigue. the pain feels like an electric stabbing pain, an ever-increasing pressure sensation around the bones affected, or a constant aching. pain can also occur in joints and they will often lock-up, becoming immobile and stiff. the pain is especially severe during 'flare-ups', which can be unpredictable, exhausting and last anywhere from a few hours to several weeks. this is a common occurrence for us, often causing extensive sleep deprivation from the chronic, severe and disabling pain. when this happens, we are often bedridden or housebound for days or even weeks.

those affected also have an unsteady walk and limp. thickening of the skull can also lead to neurological problems, like hearing loss, vision issues, vertigo and tinnitus. symptoms vary in severity from person to person. there are treatments, however it cannot be cured. pain management is a large aspect of living with this chronic disease.

there is very little awareness and research for CED. rare diseases are severely neglected and overlooked, as are those who suffer and live with them. research is often not considered profitable due to their cost to develop and the limited patient population. major federal funding agencies give preference to research that is likely to have a direct impact on patients.

living with a rare disease is extremely difficult and isolating. it impacts the lives of millions of us and our loved ones worldwide. those of us suffering from rare medical conditions should be entitled to the same quality of treatment as other patients. i am disabled, but i am worth it.

[muttren]

Holy fucking shit, pain is not a matter of fucking willpower. I'm not being fucking weak when I can't push through my fucking pain. Sometimes, I just fucking can't. I don't need to fucking "stick it out" or "keep fighting." When I say I want to give up it is not because I am not fucking trying hard enough. I am trying so fucking hard every fucking second of every fucking day. The fucking able-bodied assholes that say this shit have never been in actual pain a day in their fucking lives, and it is SO obvious. I think I don't want to talk to another able-bodied person for the rest of my entire life.

[muttren]

When you have a chronic ailment, you hear all the time “I could never.”

Oh, you cut out dairy/gluten/ect? I could never. Oh, you do self injections? I could never.

I could never deal with that much pain. I couldn’t live with all those doctor appointments. I could never stay in bed all day, I’d just get so bored! I couldn’t do it, I couldn’t live like that, can’t couldn’t wouldn’t…

Please stop implying to people with something chronic that you’d rather die than go through what they’re going through, and take a minute to understand that their treatment isn’t a hobby. It’s survival.

Yes, people with chronic ailments ARE incredibly strong. They ARE doing things you think you couldn’t ever do.

But they’re the same things that they likely thought they couldn’t ever do until they had no other option.

Yes. Often, someone with a chronic issue sees a notable decline in their quality of life.

That doesn’t make it less worth living.

You could do it if you had to.

“I could never” is not the empathetic response you think it is.

[muttren]

scott pilgrim party scene couple redraws i’ve done so far. my commissions are open ! if you’re interested, please message me. ☆

[muttren]

[muttren]

So much for that good weather we were having!

[muttren]

[muttren]

people with chronic pain will go “ why can’t I sleep well? Why am I crying for no reason? Why am I getting frustrated easily ?” Not yet realizing their pain got worse

[muttren]

Mabon Dreams

[muttren]

being chronically ill with fluctuating symptoms is so annoying because when it's at it's worst im like "okay i desperately need some type of mobility aid right now, i haven't been able to leave my house in days" but then i'm able to go for a walk one day and suddenly i feel like im exaggerating my symptoms and that i actually can walk fine and it would just be embarrassing and pointless to ask for a mobility aid assessment

but like ... not struggling as much one day doesn't take away from the days that i struggle the most

our pain is valid even when it's not at it's worst and we deserve the accommodations we need even if we don't always need them at all times

[muttren]

Umbreon is lamp

[muttren]

🌿

[muttren]

sometimes i still struggle with accepting that i really do need accommodations and disability aids, such as a disabled parking placard. there are days when i dont “feel disabled enough” simply because im having a low pain day and im able to get around a little more easily. but that doesn’t make me any less disabled and it doesn’t erase my need for it.

if you ever feel like you don’t “deserve” accommodations or disability aids, please know that if it helps you, even a little bit, then you have a right to use them. you don’t deserve to have a life that is more difficult than it could be if there are tools to help you live a life where you aren’t struggling as much.

if it makes your life a little easier, then make your life a little easier.

[muttren]

a few days ago, i found a very sluggish, barely moving (male) carpenter bee. he was so lethargic that i was able to just pick him up. he wouldn’t let go of my finger, so i brought him home.

i put him in an open container and fed him sugar water and pollinated flowers. i left him like that over night. i really didn’t really know if he’d survive or not.

the next day i checked on him, i fed him a bit more sugar water. then i offered my finger for him to climb onto again and he took the chance immediately. he rested for a bit, seemed to gain some strength and then,

he flew away. to say i was completely elated is an understatement. my heart was so happy, and it’s a moment i won’t soon forget.

protect pollinators.

[muttren]

unpopular opinion but mobility aids shouldn't cost so much !!