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Charlie Park @givesnospoons.bsky.social · Aug 1

Yes, I've considered whether the brain fog and cognitive symptoms in ME fit as a type of neurodivergence.

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Charlie Park @givesnospoons.bsky.social · Jul 26

I grew up with mum playing this cassette in the car on repeat. Great choice Australia #hottest100

Triple J Plays 🥁 @triple.jplays.au · Jul 26

🥁 Hottest 100 of Australian songs: #1
#Hottest100 #AusHottest100

#NowPlaying
🕗 8:00 pm

🎵 Never Tear Us Apart
🧑‍🎤 INXS
💿 Kick

🎧 Apple Music / Spotify / YouTube Music

📝 Lyrics

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Charlie Park @givesnospoons.bsky.social · Jul 26

*HUGS RADIO* thanks friendo #hottest100

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Charlie Park @givesnospoons.bsky.social · Jul 26

I'm terrified I'll be rage quitting the radio on hearing number 1 #hottest100

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Charlie Park @givesnospoons.bsky.social · Jul 26

Nose Bleed!!! Banger #hottest100

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Charlie Park @givesnospoons.bsky.social · Jul 26

Wanting:
Zebra, John Butler Trio
No Old Man River, TISM
Purple Sneakers, You Am I

#hottest100 but don't like their chances

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Charlie Park @givesnospoons.bsky.social · Jul 26

No idea about the top 5 #hottest100. Feeling nervous.

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Charlie Park @givesnospoons.bsky.social · Jul 22

We lose so much of ourselves 💔

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Charlie Park @givesnospoons.bsky.social · Jul 22

When explaining who I am, it's hard not to say "before disabling chronic illness, I was a psychologist, dancer, traveller, cook, yogi, swimmer. Now, I am sick with a side of disability advocacy."

There are two lives, people, identity sets - before and after. After is murkier and harder to explain.

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Charlie Park @givesnospoons.bsky.social · Jul 21

It's really hard getting people to understand that:

Yes, I can physically do a thing, sometimes even easily in the moment but

No, I cannot do the thing because of catastrophic consequences on my health afterwards that they'll likely never see.

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Charlie Park @givesnospoons.bsky.social · Jul 20

Having disabling chronic illnesses is a constant existential flip flop between:

"I must do everything possible to protect my precious, fragile health."

And

"F*** it, my life is painful and short, so I might as well eat all the pizza and dance while I can".

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Charlie Park @givesnospoons.bsky.social · Jul 18

Disability Support Provider: "We support the NDIS 💜".

Me: Not disabled people? 🤔 Well, that tracks.

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Charlie Park @givesnospoons.bsky.social · Jul 17

If NDIS funded equipment is unused (for whatever reason) it's up to the participant what they do with it.

I don't think there are NDIS guidelines.

There are FB groups to sell stuff.

It would be fantastic if secondhand equipment was checked and given to disabled people who cannot access the NDIS.

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Charlie Park @givesnospoons.bsky.social · Jul 17

While we are at it: The NDIS needs to set up a recycling scheme for equipment.

The NDIS really only funds new equipment and takes no responsibility for the equipment after purchase.

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Charlie Park @givesnospoons.bsky.social · Jul 17

Imagine the headlines if I accidentally drove my NDIS funded scooter into someone's BMW and I had no insurance to cover the damages.

I don't understand why 3rd party insurance isn't mandatory. I don't understand why the government isn't concerned about this.

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Charlie Park @givesnospoons.bsky.social · Jul 17

I cannot get over how the NDIS does not fund insurance for mobility devices.

One step further: Why don't *they* organise and offer comprehensive insurance for all funded equipment?

It would be cost effective, help to ensure quick replacement of broken equipment and is the responsible thing to do.

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Charlie Park @givesnospoons.bsky.social · Jul 16

*sigh*

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Charlie Park @givesnospoons.bsky.social · Jul 16

I think that I broke in September/October last year, when the NDIS Bill went through and disability advocates were not only ignored but mocked.

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Charlie Park @givesnospoons.bsky.social · Jul 16

NDIS Therapists: Pricing changes are the straw that broke the camel's back! We need immediate action!

NDIS Participants: Welcome to the party! Can I introduce you to Plan Cuts, Lists of Supports, Funding Periods, Eligibility Reassessments, Pre-Payment Audits, ambush planning meetings, debts...

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Charlie Park @givesnospoons.bsky.social · Jul 16

Flu = Oh shit!
GP unavailable = Hate this new shit
GP cost = Ridiculous shit
Med cost = Also super shit

Hope that shit works 🤞

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Charlie Park @givesnospoons.bsky.social · Jul 16

My meal prep worker cancelled their shift at short notice (COVID).

With the new #NDIS Lists, I can no longer claim a rebate for smoothies and sandwiches bought from my local cafe because junk food is bad man.

My partner is currently cooking meals for the week while at work and caring for me 🙃.

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Charlie Park @givesnospoons.bsky.social · Jul 12

My new article about the WILD experience of using disability services for the first time.

Powerd Media @powerdmedia.bsky.social · Jul 11

New piece by @givesnospoons.bsky.social - Journey to Planet Disability Support Services.

I thought I was well-prepared to use disability support services, but it was like being transported to a different planet where service providers’ behaviour was alien.

powerd.media/article/jour...

Planets with rings around them on a black background

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Charlie Park @givesnospoons.bsky.social · Jul 8

Before RAT tests, I would have thought this was "just a cold" and followed the standard Sick Day Plan to do nothing 👀.

It probably explains why some past "colds" -> low cortisol symptoms.

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Charlie Park @givesnospoons.bsky.social · Jul 8

PSA for people with #AddisonsDisease: If you have cold symptoms, it's worth doing a combo COVID/Flu/RSV RAT test.

I've tested positive for RSV. I'd never heard of it before. It can cause pneumonia, fever, dehydration 🚩.

I'm Sick Dosing, upping fluids, monitoring vitals, resting.

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Charlie Park @givesnospoons.bsky.social · Jul 8

WTF?! Surely he's messing with you.

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