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#accommodation

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Tim Richards

Another reason not to bother with Airbnb...

"He’d booked the apartment more than a month earlier, but barely a week before their departure, late last month, came a message from Airbnb saying his host had cancelled the booking. Instead of being hosted, he was ghosted. The property he’d booked was with a Superhost, supposedly the cream of Airbnb properties."

#travel #accommodation #airbnb smh.com.au/traveller/reviews-a

The Sydney Morning Herald · Tim’s Airbnb cancelled last-minute. He was offered a bunk insteadBy Michael Gebicki
Public
Broadwaybabyto

Telehealth is life changing for people with disabilities, seniors and those who live in rural areas.

Disabled people had been pushing for telemedicine options for years before the pandemic hit.

Covid restrictions made telemedicine a reality, and suddenly we had the type of accommodations we always needed.

For those covered under Medicare (which is many seniors and people with disabilities), telemedicine will be cut at the end of March.

It was previously due to be cut at the end of the year, but after outcry from the disability community it received a three month extension.

It’s critical people get loud about this now. Call your local lawmakers and tell them you need telehealth to continue.

People with disabilities can’t always go to the doctor in person. Leaving our homes can take a tremendous amount of spoons and cause week long setbacks (not to mention the risk of Covid and other infectious diseases).

There’s still time to ensure this vital accommodation tool remains funded!

open.substack.com/pub/jesshone

Jess Badger Writes · medicare telehealth is set to expire in 38 days.By Jess Badger
#medicare#uspoli#telemedicine
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Aaron

I could use some community advice. I have multiple sleep disorders: apnea, insomnia, and "social jetlag," where my body disregards the local time and acts as if I belong in a timezone several hours behind the local time no matter what I do. I have treatments for these, including a CPAP and medication to sleep at night and be awake in the day, but even so, I am struggling mightily with the early morning meetings with my new job, to the point that being awake for them is ruining my productivity for the rest of the day.

Added to this, I'm autistic, which makes it hard to communicate my needs effectively, and I had a *very* bad experience in a previous job when went to HR about it to request an accommodation. (They forced me to take unpaid medical leave rather than allow me to adjust my work schedule slightly, and I had to interact with a very ableist HR person regularly from then on.)

How do I bring this up with my new boss and find a happy compromise that lets me do my job?

@actuallyautistic
#accommodation

Public
Broadwaybabyto

“Your test results are normal”

“You’re just anxious”

“You’re deconditioned”

“What do you want ME to do?”

“Have you tried worrying less?”

“It’s all in your head”

“Have you been drinking?”

POTS patients spend years hearing comments like this. 

They fight for diagnosis - only to be left disappointed by the lack of support 

I have a good friend who just went through this. Despite my telling her over and over that there’s no cure for POTS - she genuinely thought that she would be the exception. 

That if she could “just” get the diagnosis - she would be cured. 

She believed she wouldn’t end up like me.

When she was finally diagnosed - all the got was a beta blocker and instructions to check online for help with salt and fluids. 

She was told they would follow up in a year - and sent on her way. 

She was absolutely distraught. The reality that she wasn’t the “exception” crushed her.

Here’s the painful truth - very few people are the exception. 

Our medical system is great at handling acute issues - it’s woefully ill equipped for complex chronic ones. 

Often the best you will get is validation and a bandaid.

For those who’ve been healthy their entire life - this is soul destroying. 

It doesn’t matter how many times we tell them that there’s no fix - they do not believe us. 

They’re certain we just aren’t “trying hard enough.”

When they’re forced to confront the reality that we tried just as hard as they did - they’re scared. They feel abandoned. Hopeless. Cheated. 

Cheated out of the life they wanted for themselves. Scared to end up like those “other” people they thought they were better than.

There’s no easy solution to this - it takes time to come to terms with becoming disabled. You have to mourn the life you had and learn to adapt to your new reality. 

Most doctors don’t help patients with this. They diagnose and run. 

No one is coming to save us so we do whatever we can to save each other. 

Patients find support on social media and chronic illness message boards. They reach out to advocacy organizations. They research on their own. 

It takes a lot of spoons to try and learn how to live with chronic illness - and there’s no welcome guide. 

My series on POTS is an attempt to provide a resource to help patients quickly and easily access tips and tools to help them manage their new life as a disabled person. 

Part Three is everything I wish I had known when I was diagnosed - including tips on salt intake, compression stockings, medications, pots-proofing your home and more:

disabledginger.com/p/learning-

The Disabled Ginger · Learning to Live Horizontally - Your Guide to All Things POTSBy Broadwaybabyto
#pots#dysautonomia#chronicillness
Public
Broadwaybabyto

My mega guide to living with POTS/Dysautonomia is here!

I cover everything I learned the hard way over years of living with this condition.

Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.

Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.

It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.

Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.

My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:

disabledginger.com/p/learning-

The Disabled Ginger · Learning to Live Horizontally - Your Guide to All Things POTSBy Broadwaybabyto
#pots#dysautonomia#chronicillness
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somcak

First class done!! I'm decompressing now. It's difficult stuff this teaching. Having to read the room, instruct, deconstruct what I know to put it in their heads in a way that works.

I was on my feet the whole 2 hours with my orthopedic boot, ugh, and have just requested a tall chair for in there for next week. #accommodation

Continued thread
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Ludibriumventis

Update: Someone triggered the overhead lights... *sad trombone sound*

But that's why I am so glad i worked with the university #ADA office to get the overhead shades as an #accommodation.

I hear a couple of other people in the suite talking about the lights, that maybe they're on a timer, because apparently no one else wanted them on, either. (;

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Tim Richards

Love this piece. I've often called turndown service "my old enemy." They have a habit of showing up when not wanted, and putting things away where you can't find them.
---
Sorry, housekeeping, I’d rather my hotel room stay untouched smh.com.au/traveller/inspirati

The Sydney Morning Herald · Sorry, housekeeping, I’d rather my hotel room stay untouchedBy Katrina Lobley
#Travel#Accommodation
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