@halcionandon@disabled.social
@halcionandon@disabled.social avatar

halcionandon

@halcionandon@disabled.social

I’m severely #disabled by #ChronicIllness.

I have #SevereME #AdrenalDisease #Hypothyroidism #HyperParathyroidism #Endometriosis #Migraine #POTS/ #Dysautonomia #ChronicPain & more, topped off with #LongCovid. Hi #NEISvoid

Interests now include not being #exhausted, in #pain, or rejected by doctors for being too complex a patient. (Know good #doctors #GPs in #Melbourne taking patients?)

Need help with #accommodation #NDIS #GP #carer/ #caregiver & navigating the system. LMK!

This profile is from a federated server and may be incomplete. Browse more on the original instance.

halcionandon, to dysautonomia
@halcionandon@disabled.social avatar

The sleep after after dragging yourself through rolling PEM.

Everything is terrible.

And still got to dream more of this and feel more pain to come out the other side somewhat alive.

@longcovid
@mecfs
@dysautonomia

halcionandon, to random
@halcionandon@disabled.social avatar

My part time advocate quit. Only had some help for 3 months then she went on 2 months leave and now tells me she isn’t coming back because I’m too much. So that’s nice. 😩 I’m so tired.

halcionandon,
@halcionandon@disabled.social avatar

Anyone out there an
Could really use the help.

@disability
@disabilityjustice

halcionandon, to disabled
@halcionandon@disabled.social avatar

Why do people assume that families of people are nice?

Just automatically assume no questions.

Why?

@multipledisabilities
@disability
@chronicillness

halcionandon,
@halcionandon@disabled.social avatar

@multipledisabilities @disability @chronicillness

Why is there this assumption?

halcionandon, to disability
@halcionandon@disabled.social avatar

Do these cooler type things work at all? I have to survive another upcoming heatwave and can’t regulate my body temperature () so am risking heatstroke again.

Just humidity machines? (Humidity makes thinks even worse).

https://sotrends.com/frigus-pro-sale/

Do no have air conditioning and abuser will no allow me to have one.

@dysautonomia
@disability
@hypothyroidism
@mecfs
@multipledisabilities
@multiplesclerosis

halcionandon,
@halcionandon@disabled.social avatar

@dysautonomia @disability @hypothyroidism @mecfs @multipledisabilities @multiplesclerosis

Anybody alternatives to aircon?

Cannot regulate body temperature, trying to survive coming heatwave.

halcionandon,
@halcionandon@disabled.social avatar

@robotistry @dysautonomia @disability @hypothyroidism @mecfs @multipledisabilities @multiplesclerosis

Yep do all these things.

halcionandon, to random
@halcionandon@disabled.social avatar

HELP ME FIND SOMEWHERE ELSE TO LIVE

halcionandon, to mecfs
@halcionandon@disabled.social avatar

& heat stroke no air con live on protein shakes

Everyone coughing no masks. They had party no food for me.

and hungry.

@mecfs
@dysautonomia
@longcovid

halcionandon, to dysautonomia
@halcionandon@disabled.social avatar

PEM & heat stroke no air con live on protein shakes

Everyone coughing no masks.

Neglected

@mecfs
@dysautonomia

dgar, to random
@dgar@aus.social avatar

You can't put a lava lamp in your basement.

If it’s underground, it’s a magma lamp.

halcionandon,
@halcionandon@disabled.social avatar

@amgine @dgar

If it doesn’t happen for @dgar it never will.
😉

halcionandon, to longcovid
@halcionandon@disabled.social avatar


More awaits me over the next who knows how long. It never gets easier.
It’s never predictable anymore. The I’ve developed as a result of so much overexertion during the last few years has made it into pain that I’m used to but never stop fearing.

@mecfs
@longcovid
@dysautonomia

halcionandon,
@halcionandon@disabled.social avatar

@mecfs @longcovid @dysautonomia

Guh running from the PEM. No pun, and you can’t. :(

halcionandon,
@halcionandon@disabled.social avatar

@mecfs @longcovid @dysautonomia

Brain stoppppppppppp please

When meds invented for this will change the world for millions of patients.

halcionandon,
@halcionandon@disabled.social avatar

@mecfs @longcovid @dysautonomia is kicking my arse nothing workssss. Bed has amazing gravitational pull stuck here.

DenisCOVIDinfoguy, to australia
@DenisCOVIDinfoguy@aus.social avatar

🇦🇺 Australia: EXPOSE GOVERNMENT LIES ABOUT COVID SAFETY

The Australian government is failing to act to ensure the safety of the community, and this is particularly concerning in schools, hospitals and aged care.

COVID Safe schools is committed to exposing lies and buried facts about transmission, and the lack of prevention measures in schools, hospitals (and other health care settings), and aged care.

Please contribute what you can.

@auscovid19

Source: https://www.gofundme.com/f/expose-nsw-governments-lies-about-school-safety

halcionandon,
@halcionandon@disabled.social avatar

@DenisCOVIDinfoguy @auscovid19

I really miss when Australia didn’t suck.

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

are .

I am so weak and hungry cannot think.

I tried so hard to get out of here but I can’t get away. I tried so hard be they worse when I am very sick and can’t fight back. 😭 They promised to help during tough week. Instead screamed at denied rest and food.

I’ll be dead by year is out if this continues.

@disabilityjustice @disability
@chronicillness
@mecfs

halcionandon,
@halcionandon@disabled.social avatar

@disabilityjustice @disability @chronicillness @mecfs

They know I have nowhere to go and block anyone trying to help. They punish me for trying. 😭

halcionandon,
@halcionandon@disabled.social avatar

@disabilityjustice @disability @chronicillness @mecfs

If anyone wants to take me in and be my carer you’re welcome to help.

That hasn’t worked so far but people are poorer now so maybe🤞

It would include carer allowance (not means tested, about 75$ week) carer allowance (up to about $500 a week if you aren’t working, or possibly less depending on how much you work.) We could go halves in rent or some other arrangement depending on your living arrangement.

halcionandon,
@halcionandon@disabled.social avatar

@disabilityjustice @disability @chronicillness @mecfs

Please ask any Australians you know if they can help me with /. Situation worsening. Please 🤞😩😭

I am in ,

halcionandon,
@halcionandon@disabled.social avatar

@disabilityjustice @disability @chronicillness @mecfs

Can somebody please post this to other platforms? I can only manage here & X. 🙏

halcionandon, to disability
@halcionandon@disabled.social avatar

Abusers are abusing.

I am so weak and hungry cannot think.

I tried so hard to get out of here but I can’t get away. I tried so hard be they worse when I am very sick and can’t fight back. 😭 They promised to help during tough week. Instead screamed at denied rest and food.

I’ll be dead by year is out if this continues.

@disabilityjustice @disability

halcionandon,
@halcionandon@disabled.social avatar

@disabilityjustice
@disability

They know I have nowhere to go and block anyone trying to help. They punish me for trying. 😭

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

I’ve been traumatised so badly by the medical system that even getting bloodwork done is freaking me out.

I wasn’t like this a few years ago. A lot of bad stuff has happened since then.

It is 13 tubes though. 😩

involves a lot of medical trauma. There’s a lot of related mental trauma too but you have no energy to deal with it so it’s constant running to keep still. Like a hamster on a wheel. Especially when the medical system fails you & basic needs aren’t met.

@chronicillness

halcionandon,
@halcionandon@disabled.social avatar

@chronicillness
Blood draw done.

Another one to add to the trauma drawer.

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