@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!

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halcionandon, to mecfs
@halcionandon@disabled.social avatar

Ok overdone it big by trying to be normal and post/interact.

Will pay in worseened symptoms tomorrow (dreaded #PEM)

Nice talking to you. (The people I managed to get to.)

(Such is life/existence with #SevereME and #ChronicIllness)

@mecfs

halcionandon, to longcovid
@halcionandon@disabled.social avatar

Did anyone with get a ton of rashes you can’t explain?

Nothing gets rid of them.

Plenty of other symptoms but this is one that doctors always blame on allergies.

My hair also got intensely dry to the point where it didn’t need washing for 3 weeks. There was no sebum! I had to oil it & leave it in for a week even after using a very rich conditioning treatment.

My nose would also not stop bleeding.

I’m about 2 months into my second infection. Already have .

@longcovid

halcionandon,
@halcionandon@disabled.social avatar

@PurpleSpeedwell @longcovid
You’re probably right there. I forgot about MCAS.
Another symptom of / Covid - memory loss.

halcionandon,
@halcionandon@disabled.social avatar

@chemoelectric
They don’t itch though. Hives/ urticaria are meant to itch, right?

Someone just reminded me of which is often trigged by so that would explain a lot.

Possibly just getting rashes for the sake of it.

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

It’s really hard having had a . I’m mostly recovered but people expect me to be entirely ‘normal’ bc I don’t look like I had a stroke.

The world is so & I shouldn’t need a dr, etc to explain why I need visual cues to understand speech. I find regular people have this problem too to various extents so why?

Deniers are the worst. Mostly drs (it’s in my medical records!).
Constantly explaining one of the most traumatic times in my life just to access the world.🥺

@chronicillness

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

Unsure how common this is in other affecting cognition, but when you have the writing errors you’re almost guaranteed to make are:

  1. Double the same word
    or
  2. Exclude it altogether
    Or do both!

So frustrating & the sicker you are the worse it gets. You simply can’t see mistakes! Other problems too ofc but I’ve found this is the most common error made by

I did both when composing this!

I miss my old brain!
😩

@mecfs @longcovid @chronicillness

halcionandon,
@halcionandon@disabled.social avatar

@mecfs @longcovid @chronicillness

It takes forever to draft posts so when those of us on the more severe end of make one it’s really hard. I wish I could explain how tough it is & people understood how much we’re sharing of limited energy supply.

And sometimes you get too sick to read and write at all. Or look at a screen because of sensory overload.

Now it’s worse because of my recent 3rd infection which both worsens existing symptoms and gives you new ones!

Wear a mask!

halcionandon, to random
@halcionandon@disabled.social avatar

There’s a lot of things I don’t understand, but here’s just one:

killed over a million people in the US and is still going strong.

Why does nobody talk about it?

That’s roughly 1 in 300 people.
You would know at least someone who died of it. Is it mass trauma?

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

This is me:
https://t.co/f1vB5pXoK6

There are help links in the article but to summarise:

My crowdfund: https://www.buymeacoffee.com/halcionandon

Also:
People with Australian bank accounts can use https://www.beem.com.au to pay @halcionandon. Fee free & anonymous.

People helping me is most important. I need a safe place & an #advocate the most. Please consider.🙏

Please #boost & thanks for reading. Help not expected but appreciated.💜

#MutualAidRequest
#MEAwarenessMonth

@mutualaid
@mecfs
@chronicillness

halcionandon,
@halcionandon@disabled.social avatar

@Rob200 @mutualaid @mecfs @chronicillness @disability
Not homeless yet.Trying very hard to avoid that situation. The other living conditions are in the article.

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

Please boost.

Seems I’m famous (and real!) and desperate enough to go to the media for help.

https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

@mecfs
@chronicillness
@longcovid
@neisvoid
@disability
@disabilityjustice
@longcovidaus
@hypothyroidism

halcionandon, to disabled
@halcionandon@disabled.social avatar

How can I get people to consider me as a ? What can I do?

People will live with strangers who advertise on Gumtree but I’m too…? I not going to kill your pets or steal anything.

🤷‍♀️

@disability
@disabilityjustice
@chronicillness
@nostupidquestions

halcionandon,
@halcionandon@disabled.social avatar

@Aileen22 @disability @disabilityjustice @chronicillness @nostupidquestions

Yes I keep posting that I can pay part of the rent as well as pay them for being my carer, so that’s roughly the same I think.There’s government help but people really don’t want anything to do with government agencies here so maybe that’s the problem.

I’m not sure if there is a platform for this in Australia. If anyone knows, let me know please.

halcionandon,
@halcionandon@disabled.social avatar

@bike @disability @disabilityjustice @chronicillness @nostupidquestions

Awww thank you.

halcionandon, to cardiology
@halcionandon@disabled.social avatar

Anybody know what this means or how urgent it is?

I was too sick to do a appointment so the they sent is still in the bag, just get it back to them when I’m able.

Then I get this message an hour ago:

“Our Blood Pressure and Holter monitor has been with you since 13th of March 2024.

We now require you to return it to us urgently to avoid any damage to the internal clock.”

Whaaattt? Nobody told me! I need help to send it back.

@medmastodon
@chronicillness

halcionandon, to disabled
@halcionandon@disabled.social avatar

plz Situation terrible. 😔

suffering . Food withheld, basic needs ignored.

If you can offer a room & be a please help. Ask everyone you know. Boost until someone sees.

Can pay carer allowance (not means tested, about 75$ week) carer allowance (up to about $500 a week. Can go halves in rent too, depending on your needs

Don’t give up on me I can’t survive here.

In ,

@disabilityjustice @disability @chronicillness

halcionandon, to australia
@halcionandon@disabled.social avatar

Can people PLEASE help me contact #churches/ #priests/places of worship/ community groups & ask if they can help me find somewhere to live.

Don’t have to be in #Australia. Search for help in #Melbourne area. Search the #fediverse. Anywhere.

Ask your place of #worship if you have one.🙏

None of the orgs I‘ve been referred to help people with #ChronicIllness or #disability
(Orange Door, Safe Steps I’ve tried them all.)

I cannot live like this anymore.

@chronicillness @mutualaid
@disability

halcionandon, to melbourne
@halcionandon@disabled.social avatar

I may need to go to hospital and remember being driven back from hospital on other occasions. Does anyone know what these circumstances involve? I can’t remember.
I am sure this happened in the past. Was it ambulance transport?

Local hospitals are saying no they don’t do that so wondering how the eff to get home when can’t stand or sit up long without passing out.

@mecfs
@neisvoid
@pwme
@chronicillness
@multipledisabilities

halcionandon, to melbourne
@halcionandon@disabled.social avatar

Help me please 🙏 Need somewhere else to live. Being / denied help.



@disabilityjustice @disability
@mecfs @mutualaid @longcovid
@neisvoid @chronicillness @socialwork @socialworkers @hypothyroidism @dysautonomia

halcionandon,
@halcionandon@disabled.social avatar

@disabilityjustice @disability @mecfs @longcovid @neisvoid @chronicillness @socialwork @socialworkers @hypothyroidism @dysautonomia @mutualaid

I don’t understand why people in other countries offer help but barely any from . Especially .The sicker you get & more help you need the more people feel sad & switch you off &put you on the pile as “not my problem” or “someone else will do it”
No they won’t.

No offer of room or any accommodation so far.
🥺

Please help if you can.

halcionandon, to melbourne
@halcionandon@disabled.social avatar

plz Situation terrible. 😔

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

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 circumstances.

In ,

@disabilityjustice @disability @chronicillness @mecfs @mutualaid

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Guys what do I treat with? How do I get ? Does it work? This is a 3rd time infection but because of heavy brain fog I can’t remember the treatments or supplements used!😩

Already got !

Help please.

In Australia for Paxlovid reference. Most things closed today (Good Friday).


@longcovid
@mecfs
@neisvoid
@chronicillness
@multipledisabilities

halcionandon, to random
@halcionandon@disabled.social avatar

Woke with fever. No more god plz
😭

halcionandon,
@halcionandon@disabled.social avatar

Abusers brought me again
3rd time. They won’t mask.

Already got

Get me out of here please 🙏

Anyone in help. Will move states too.


@mutualaid
@disability
@disabilityjustice @mecfs
@longcovid
@socialwork
@socialworkers

halcionandon, to melbourne
@halcionandon@disabled.social avatar

#boost plz Situation terrible. 😔

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

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 circumstances.

In #Melbourne, #Australia

#housing #Abuse #MutualAid

@disabilityjustice @disability @chronicillness @mecfs
@mutualaid

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