duality-disability - Tumblr blog

[duality-disability]

wow.. finding this again after nearly two years, i'm gonna fuckin cry.

I wish I would have known.

I wish I would have been there; To see them treat you like they've done.

To see why you think such meekly of yourself.

A shadow of who you once were

Who you could have been

And I wish; I wish with all my heart, our little crow, that you could see yourself the way we see you

So full of compassion and joy and strength that sometimes our love for you overwhelms us

Filling us so full that we burst; wrapping you in our arms and holding you close

Holding you and treasuring you like they should have done all those years ago

Treating you to the kindness you never gave to yourself

Their poison flowing through your veins even now

So scared that any attempt at change, any attempt to allow yourself to heal will fail

That you will be knocked over, nothing more than a seedling swept away by the storm that is your raging mind

But our dearest little crow.. If you are merely a seedling

Allow us to be your roots

Allow us to be the walls that block out the winds and the shade that protects you from the storm

Because, little crow. You may be grounded now

Your wings clipped, feathers mangled and tattered

But as long as you have us...

You'll be soaring in no time

Let us give you the protection

The guidance

And the love that they were never willing to

Because, to us, our amazing, brave little crow

You are enough.

And you will always be enough.

Exactly as you are.

Yours. For now and forever more.

-Taishiro Toyomitsu, Shota & Hizashi Aizawa; and the rest of the Polycule

[duality-disability]

we got a really good brand of shoes today, we plan to break them in before our next shift on Sunday [these are genunine leather shoes with built in arch support; And they are incredibly comfortable]

our parents got them for us, maybe to celebrate the new job.. they're like 200$

i'm incredibly thankful, and according to them, these shoes should hold up even after 3~ years of heavy usage. I hope they're right.

[duality-disability]

does corviknight count as edgy or weird

[duality-disability]

we got a job..!!!

its only part time work, between 15 and 25 hours a week, for 11$/hr. But it's something.

We can finally start saving up for things like accessories for our mobility aids, braces for our limbs, new equipment, and idk maybe an apartment some day.

i'm so excited..

[duality-disability]

what the absolute fuck is going on with my body.

Since fuckin, before the pandemic even; I've been having progressively worse and worse lower body weakness, pain, fatigue, balance issues- and just, so much shit.

now.. Today, after slow improvements, I have.. no pain, in our legs.

nothing has really changed either.. nothing significant, anyway.

it just. Is this remission?- Is this relief only temporary or are we actually getting better? what is going on?

i.. fuckin imposter syndrome is going to come for my ass later, i know it is.. I like not having the pain but it. Ough. I'm almost frustrated with it in a way.

[duality-disability]

Ah yes, just daydreaming about mobility aids. You know, like every healthy normal person does...

[duality-disability]

[duality-disability]

on the 17th, I see GI & Genetics; and on the 18th, I see our new neurologist.

i'm.. So fucking anxious.

GI is a follow up to discuss test results to see if there's anything causing the issues we've had with our mouth and throat muscles.. which have gotten better as of the past week?

Genetics is new, is an inital intake, and is for some more private stuff, but then i'm also gonna ask to see if they can look more widely at possible genetic causes or predispositions we have that may be causeing our mystery illness

then.. Neurology is the one i'm really worried about.

We want to get MS ruled out, and honestly anything else that he can test for and be able to discount as not a cause of our issues.

So far with the notes we've been making; It's something that causes widespread pain, fatigue, messes with vision, blood pressure issues, issues regulating temperature & heart rate; Causes problems with weakness, numbness, dizziness, balance, maybe even our spacial awareness stuff - Pain with moving body limbs, our eyes, and difficulty with bathroom habits; both joints and muscles also affected. Headaches/migraines..

It's also something that, flares up and then gets better. In a very repeating cycle - But each time it flares, it gets worse. So it's a slowly descending downwards spiral.

it's. All of this shit is pointing to somethng with our nerves. That is the nerve specialty doctor.

I.. i dont want to be told its all in my head again. I'm not imagining my knees buckling from under me or staying up until 6am with imagined pains. Something is wrong and i need it to be found out before it kills me.

Edit: If you've never been in my notes before or interacted with me, please stop attempting to diagnose us based off of 1 post. Thanks.

[duality-disability]

I have an appointment to see my doctor about my postural headache shit in early may; I know i should likely get them seen before then, but I have.. a lot of appointments as it, and my family is tired of transporting me to the ones i already have.

so i'll just.. i'll get through it. even if i have to crawl my way through each day.

why does sitting up and standing just make me want to die.

[duality-disability]

happy birfday

IT MY FUKEM BIFTHDAY!!!

[duality-disability]

had a therapy appointment today, and our therapist supported our decision to

1; get a new neurologist

2; see if the new neurologist will rule out MS, and rerun the previous tests our past neuro did because he was intensely dismissive and surface level.

We love our therapist so much. she's been one of our best advocates for medical decisions we've been making and supporting us when our family wont. (At least emotionally)

[duality-disability]

it hurts to move my eyeballs.. who the fuck invented this shit..

[duality-disability]

i've developed, over the past serveral weeks, headaches and borderline migraines that happen every fucking time we sit and stand up. Like, it gets better when we lay down so it's somewhat manageable.. But we have shit to do!! i want to stop feeling like i'm gonna die the moment i get out of bed!!!

[duality-disability]

i think i'm sick; Agressive stomach aches, daireeha, naseua & vomiting. i'm glad i have meds to help the symptoms & trying to stay hydrated, but moving around when you feel on the verge of collaspe fucking sucks.

whoever allowed chronic illness & regular illness to mix should be banned

(from life? from earth? from this place? who knows, i'm tired)

[duality-disability]

[duality-disability]

why is sense of impending doom such a fucking unspecific symptom. my chest hurts, i cant really stand, breathing is hard, i have a headache, i went to laydown and it isnt doing much. I thought it would help.

this isnt my usual panic or anxiety either, this is something distinctly different, if you asked me to describe it, i dont know that i could other than something is very wrong and its coming on fast. i dont know where. I dont know when, but its coming and i wish it could just be over with.

[duality-disability]

hnnnnnn I really need to get MS ruled out when we see this new neurologist. Our previous one never ruled it out and it's been the no.1 suspect for.. quite some time;

Even moreso after a different professional mentioned the way our symptoms are presenting sounds akin to how their MS began.

like.. We felt heard, finally understood.. and yet it was another doubled edged sword.

I'm tired of not knowing what's going on and feeling trapped in my own body