@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 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, 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.

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Having blood test tomorrow.

How do I ready myself? I was going to eat/drink more for the past week but got a long migraine and health problems bc of hot humid weather. So I drank more but eating more didn’t work out much.

I also have low blood volume so that makes it even worse. I’m generally wrecked for at least a few days after a blood draw.

Suggestions?

@chronicillness
@mecfs

halcionandon,
@halcionandon@disabled.social avatar

@Rhube @chronicillness @mecfs

Do this in lead up to blood draw then afterwards? I’ve had some concerts loading up beforehand might affect results. Don’t know brain in fog.

halcionandon,
@halcionandon@disabled.social avatar

@bananamangodog @chronicillness @mecfs
I will be lying down on the couch here as I can’t make it out of the house atm. Bedridden w severe ME and Long Covid. Home visit.
So the electrolytes won’t make a difference to the test results?
Have confirmed they’re taking 13 tubes. 😩 That will mess me right up. That’s a lot of blood isn’t it?
That would probably make a regular person feel sick.

Are blood draws designed for healthy people?

I would guess losing any blood in ME puts us on high alert.🤷‍♀️

halcionandon, to melbourne
@halcionandon@disabled.social avatar

I desperately need an . If you are able to help, let me know. best but anywhere in is ok you can dial into any meetings.

Yes I‘be checked all the lists. There’s nobody free.

Please boost. 🙏


@chronicillness
@disability
@disabilityjustice

halcionandon, to disabled
@halcionandon@disabled.social avatar

Q: What is the average opinion of / people in your country? People that know nothing about you personally.

Has it changed since ?

If you’re on meds does the dispensing pharmacist think you’re an addict?

Does govt help or is it a family issue?

Is there an attitude difference between born disability & acquired disability/illness?

(Asking bc I think they’re trying to thin us out.)


@chronicillness

@chronicpain

@mecfs

halcionandon, to mecfs
@halcionandon@disabled.social avatar

please

GPs in clinics waiting for me to:

  1. Go into aged care.
  2. To see a GP (Who works in their clinic.)
  3. Because I don’t fit their business model. (They won’t visit or Telehealth me even if I see them.)

Someone help me! 😭

❤️🔄💬

@mecfs
@chronicpain @chronicillness

halcionandon,
@halcionandon@disabled.social avatar

@maggiejk @disabilityjustice

If if I came in they wouldn’t help. I’m too complex.

Here they get paid for Telehealth so it makes no doctors difference in terms of money.

I’m severe heading to very and it doesn’t matter they’d rather see me get worse to fit their model

halcionandon, to mecfs
@halcionandon@disabled.social avatar

please

How many days meant to wait after stopping before starting ? Have prescribed LDN. It used to be 3 days standard but now? Dosage? I got 1.5mg but can pull apart capsules.
What happens when start LDN?
Your experiences also help. I know many out there been through this.

System has pretty much abandoned me. Don’t ever live in wrong postcode.😔


@mecfs

@chronicpain

@chronicillness

@longcovid

@neisvoid

dgar, to random
@dgar@aus.social avatar

I can always tell when it’s raining because of my knees.

They get wet.

halcionandon,
@halcionandon@disabled.social avatar

@dgar
It’s raining wee?

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

Been awake 5 days trying to secure GP. Looks like facing stopping medication cold turkey because nobody wants to help. I just keep getting sicker.

I need sleep while still have meds.

If any tips for withdrawal from fentanyl 25ug please help. Don’t think body can handle it. I don’t know what to do.

Mushrooms? I’m so exhausted don’t fucking know.

This is what they do to sick people in Australia. 😭



@chronicillness
@chronicpain
@medmastodon

halcionandon, to mecfs
@halcionandon@disabled.social avatar

NOBODY WILL HELP ME.

WHAT DO DOCTORS WANT TO HEAR?
WHAT ARE THE MAGIC WORDS YOU WANT TO HEAR?

I’M BEING LEFT TO ROT.

HELP ME. 😭

#MEAwarenessHour
#PWME #MECFS #ChronicIllness
#NEISVoid #Spoonie #Disability #MedMastodon #ChronicPain #Endometriosis #LongCovid

@mecfs
@chronicpain
@chronicillness
@endometriosis
@medmastodon
@longcovid

dgar, to random
@dgar@aus.social avatar

I’m old enough to remember the first TED talk.

It was most excellent.

halcionandon,
@halcionandon@disabled.social avatar

@dgar righteous!

vlrny, to random
@vlrny@disabled.social avatar

I am watching an animal rescue show and there is this lil whippet dog I am totally in love with.

I want to bring her home and call her Devo.

halcionandon,
@halcionandon@disabled.social avatar

@vlrny har har

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Does anyone have experience with Buprenorphine?

I’m told it’s a painkiller used to wean off opiates but not for longterm use because it’s addictive in itself & has side effects.
(Must stop fentanyl. Govt policy.)

Never tried it before hoping I could use it with low dose naltrexone if I wasn’t getting enough pain control. The pain specialist wasn’t sure.

is one of the few things I haven’t tried & works wonders for some people.

@chronicpain
@mecfs
@longcovid

halcionandon,
@halcionandon@disabled.social avatar

@criquaer @chronicpain @mecfs

Yes it does help thanks. I haven’t come across anyone who uses them. I have the same issue with adhesives too & don’t know how 1 patch can stay in the same place for a week. Which dose are you on & what kind of side effects do you have if any? How nasty is withdrawal? I’m on fentanyl yet they want to use buprenorphine to get me off it, but if they’re both addictive this doesn’t make much sense.

It’s bizarre how many doctors don’t know itself is painful.

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Very sick feel body is finally giving up.

@mecfs
@longcovid
@chronicpain
@chronicillness
@disability

halcionandon,
@halcionandon@disabled.social avatar

Don’t know what will happen but won’t last another year without miracle.

@mecfs @longcovid @chronicpain @chronicillness @disability

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Afraid being forced into long trip outside will worsen my health until it kills me.

No carer.

Nobody is helping.

@mecfs
@longcovid @chronicpain

halcionandon,
@halcionandon@disabled.social avatar

@Invisiblyillin @mecfs @longcovid @chronicpain

It is and I don’t know what to do. 😭

Even the government doesn’t care.

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