vela-aureum

[vela-aureum]

When a chronically ill or disabled person gets their lab tests back as “normal” or all clear, we aren’t sad because we WANT to be sick.

We’re sad because we *know* there’s something wrong with us, yet the scans still stay clear.

Before you kill the monster you gotta know its name.

#chronic illness #chronically ill #disability #chronic pain #chronic fatigue #actually disabled

[vela-aureum]

A very important medical journal recently published that discusses the harm in falsely labeling ME/CFS as psychosomatic.

#mecfs #cfsme #myalgic encephalomyelitis #medical news #mecfs research

[vela-aureum]

anyway here's to disabled people who are not healing. disabled people who are not recovering, ever. people with disabilities that only get worse and worse over time. people who cannot access treatment for their disabilities or whose disabilities simply aren't treatable. people who know they'll only get more and more disabled as time goes on. people who know their disability will kill them sooner or later. you are seen, you are important, you are not dead weight, and you deserve support.

#A senior doctor recently recommended that I do 30 minutes of exercise every day #In my country my illnesses are not recognized #no support #no help

[vela-aureum]

If you have to ask yourself if you’re disabled enough, that’s usually a sign you are. You are valid.

#actually disabled

[vela-aureum]

EMG test today ✌️😔

#also had one last week #neurology #emg #spoonie

[vela-aureum]

#very accurate

[vela-aureum]

doing stuff is so hard shout out to anyone who has done anything

[vela-aureum]

There’s no such thing as work-life balance for neurodivergent & chronically ill people.

This is because everything in my life requires work:

maintaining friendships

keeping up with my hygiene

managing bills

making money

remembering my basic needs

sleeping regularly

outputting creatively

All requires some aspect of work for me.

And when everything in your life requires work, your balance goes out the window.

If you're neurodivergent and overwhelmed — I see you.

If you're chronically ill and overwhelmed — I see you.

You're not dysfunctional.

You're not incapable.

You're doing your best.

#chronic illness #work life balance

[vela-aureum]

Thank you for always listening to me, understanding me, getting upset with me and laughing with me. Thank you <3

#conversations #vela-aureum

[vela-aureum]

Wishing all undiagnosed/partially diagnosed people a very doctors listening to you and providing you with more testing than a blood draw and even possibly providing treatment 2024

#tw blood mention #i need that next week #....

[vela-aureum]

tumblr is great bc I feel a little less alone in my experiences as a disabled person

#this

[vela-aureum]

Hey, I know chronic pain is absolute hell for physically disabled and chronically ill people, but can we also talk about the chronic discomfort symptoms?

Like, it doesn’t hurt per se, but it sucks ass.

Like involuntary movements, making it hard to move or function

Nausea, the absolute BITCH

confusion, brain fog, forgetfulness

Getting lightheaded or dizzy or problems with the vestibular senses

RESTLESSNESS

Numbness and tingling

Fucking fatigue. Like the kind that makes you feel like a rubber noodle that weighs 800 tons and you can hardly left an arm.

Weakness in general, like that’s annoying as hell. Why can I not open this bottle.

I haven’t experienced this, but I imagine full or partial paralysis is pretty sucky.

Trembling. Like, sometimes not even because something hurts. Your just shaking, vibrating, man. What.

So yeah. Complain about discomfort from your disabilities and illnesses, you deserve it.

#brain fog #fatigue #weakness

[vela-aureum]

in recognition of World Down Syndrome Day on March 21

#world down syndrome day #down syndrome #march 21

[vela-aureum]

I'm sick of going through the same cycle again and again and again and again and again and again and

#so fucking tired of this #chronic illness

[vela-aureum]

endless love to everyone whose body attacks itself

#disability #chronic illness

[vela-aureum]

Just because I work part-time, others seem to have the feeling that I always have time for them and their concerns. Sad..

And you haven't understood it for years. Even sadder.

#chronic illness #disability #family #empathy #respect

[vela-aureum]

shout out to all the people who have unknown chronic illnesses, i’ve been thrown around and tested for months and months and every doctor knows something is wrong but just not what it is

#chronic illness #chronic pain #same...