halcionandon

halcionandon, 4 months ago to mecfs

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
#ChronicIllness #Neisvoid #MECFS #LongCovid

halcionandon, 1 day ago to longcovid

Did anyone with #Covid 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.

@longcovid

halcionandon, 8 months ago (edited 8 months ago) to australia

If things go bad & I can’t get #pain #meds on time, can anyone recommend #herbs/remedies/whatever to help withdrawal?

Also, is there anything legal & equivalent in pain control to 25ug fentanyl (not as strong as you think). If I can find something I don’t need a script for that would be great so I’m not held hostage like this in future.

Medicating yourself is pretty much illegal in #Australia unless it’s alcohol.

#Kratom is illegal btw

#ChronicPain @chronicpain
#Mecfs @mecfs #Endometriosis

halcionandon, 10 months ago to mecfs

Where are the #NEISvoid people?
#ChronicPain #ChronicIllness
#MECFS #LongCovid #Migraine #Endometriosis #Dysautonomia #POTS #Disability #SevereME #PwME #Spoonie

Say hi 👋🏻

(I was hoping we’d build a #neisvoid / chronic illness-type place here.)

@neisvoid @mecfs
@chronicpain
@chronicillness
@disability

halcionandon, 6 months ago to mecfs

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.

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

@chronicpain #ChronicPain #MECFS #PwME
@mecfs
@longcovid

halcionandon, 4 months ago to chronicillness

#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
@chronicillness
@mecfs

halcionandon, 1 month ago to disabled

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

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

🤷‍♀️

@disability
@disabilityjustice
@chronicillness
@nostupidquestions

halcionandon, 6 months ago to mecfs

#Boosts please

How many days meant to wait after stopping #opiates before starting #LDN? 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
@mecfs
#ChronicIllness
@chronicpain
#chronicpain
@chronicillness
#longcovid
@longcovid
#neisvoid
@neisvoid

halcionandon, 4 months ago to longcovid

#MEAwarenessHour
More #PEM awaits me over the next who knows how long. It never gets easier.
It’s never predictable anymore. The #RollingPEM 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, 16 days ago to chronicillness

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, 8 months ago to melbourne

Please help me find a #GP or any #doctor willing to prescribe #fentanyl patches within the next 17 days in #Melbourne #Australia

Refused meds by GP who promised to prescribe until I found a new GP (he dropped me because my case is too complex). Changed his mind! Now have 17 days to find any doctor to write a script or #withdrawal agony for me & no #pain control.

Time running out fast!😫

#ChronicPain
@chronicpain @mecfs #Medicine
#MECFS #MedMastodon
#PwME #PwLC
@chronicillness @longcovid

halcionandon, 3 months ago to disability

Do these cooler type things work at all? I have to survive another upcoming heatwave and can’t regulate my body temperature (#dysautonomia) 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, 3 days ago to chronicillness

Unsure how common this is in other #ChronicIllness affecting cognition, but when you have #MyalgicEncephalomyelitis 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 #PwME

I did both when composing this!

I miss my old brain!
😩

@mecfs @longcovid @chronicillness

halcionandon, 7 months ago to mecfs

Very sick feel body is finally giving up.

#SevereME #PEM #LongCovid #PwME #PwLC #ChronicPain #ChronicIllness

@mecfs
@longcovid
@chronicpain
@chronicillness
@disability

halcionandon, 2 months ago to random

Woke with fever. No more god plz
😭

halcionandon, 5 months ago to mecfs

#Boost 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
#PwME #MEAwarenesshour #MECFS #ChronicPain
#ChronicIllness #PwLC

halcionandon, 5 months ago to disabled

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

Has it changed since #Covid?

If you’re on #pain 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
@chronicillness
#ChronicPain
@chronicpain
#MeCFS
@mecfs

halcionandon, 7 months ago to mecfs

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

No carer.

Nobody is helping.

@mecfs
@longcovid #pwme #SevereME #LongCovid @chronicpain #ChronicPain

halcionandon, 3 months ago to disabled

Why do people assume that families of #disabled people are nice?

Just automatically assume no questions.

Why?

@multipledisabilities
@disability
@chronicillness

halcionandon, 1 month ago to melbourne

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

#Melbourne #Australia

#MECFS #pwME #ChronicIllness #Disability #NEISVoid
#MutualAid #Housing #LongCovid
#Hypothyroidism #Dysautonomia

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

halcionandon, 1 month ago to melbourne

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.
#Melbourne #Australia

#POTS #Dyautonomia #PwME #MECFS #NEISvoid

@mecfs
@neisvoid
@pwme
@chronicillness
@multipledisabilities

halcionandon, 3 months ago to random

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, 4 months ago to disability

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, 4 months ago to chronicillness

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. 😩

#ChronicIllness 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, 3 months ago to mecfs

#PEM & heat stroke no air con live on protein shakes

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

#Neglected and hungry.

#VerySevereMe #MECFS #LongCovid #Dysautonomia #Pwme

@mecfs
@dysautonomia
@longcovid