Vanessa Smith

HighNess In the grand old tradition of cashing in on the existence of the royals, and in the less grand and way less old tradition of me making unhelpful journals (the ultimate snarky gratitude journal and new-ness) comes the latest amazing offer. An exploita

The thing you never thought possible is here: Journal your way to royalty!!
payhip.com/b/T5NU3

And people are so all or nothing on employment topics, as if my job not being my identity means I do it badly.

Nope, it’s done fine, it’s just one part of my life not all of it 🤷‍♀️ Feels like a basic concept to me but apparently not for everyone!

Because it’s realistic. My disabilities aren’t shameful, they dictate my abilities, they can’t be improved through accomodations, there are no treatments - they are all encompassing so while it’s not my only identity it has a massive impact on my identity.

Love them! That’s a great purple too.

Funny (not funny) how people are all “oh no, don’t make your disability your identity” but they have no problem with people who make their *jobs* their identity.

I’d take disability as identity over a job as identity any day.

You know a writing project is real when you create a new account for it somewhere online 😂

(It’s very very far away from publishing or sharing, it’s research & plotting stages. If I do create separate socials for it as well, I’ll let people know in the future.)

Yep sadly there’s tons of research that shows partners leave sick partners

YouTube video by NormalNess 26 Jan 2025

Time lapses I take are mostly of clouds and sky, which means they may have flashing effects in them and be unsuitable for some people.
youtu.be/qu4Zl4R66Rw

Nas spoke at work recently and it was good to hear her talking about her approach to these type of topics.

If I have to explain to you why it's a bad idea to use a machine that makes shit up 15-80% of the time AND destroys the environment AND contributes to rising fascism and genocide AND puts brilliant skillful creatives out of work by stealing their work, then we're already speaking different languages

It’s only problematic through a capitalist lens -- to people who mistake community for a growth metric rather than a space for actual conversation.

And I know people more severe than I am would look at my post and wish for my problems. But all of us need and should be able to get more supports for our disabilities

A UBI or some kind of accessible income would make so much difference to so many of us.

YouTube video by NormalNess Happy Home Paradise: Apple: My Own Apple Orchard

Apple: My Own Apple Orchard. Animal Crossing: New Horizons. Happy Home Paradise DLC. youtu.be/NCGlX8a_6yc

I can’t set up a more sustainable life while I’m living an unsustainable life, it’s not possible to do it that way with energy limiting conditions.

That looks like: work + bed in the dark. As little as possible outside of that.

No support reduces quality of life.

And yet pacing is what you’re supposed to do with this condition. The harsh reality is pacing requires privilege, primarily support for tasks and finances.

So I work and I do my best to slow my decline as much as possible.

I can work a little. It’s really fucking hard to work even an easy, flexible, remote job.

I’d like to take 6+ months off and rearrange my life in a more sustainable way, try to prevent burnout getting worse.

That would require massive financial support, which doesn’t exist.

I can’t get disability type support (incl payments). I don’t have family.

I work because while it harms me and will cause a decline, it’s a slower decline than unemployment / homelessness would cause.

That’s the reality.

Some thoughts I shared elsewhere after seeing a post about how people with severe ME die when they become homeless.

A lot of the time MECFS groups will tell you to quit your job. I get where they’re coming from but it’s not an accurate representation of reality.

Shows a sick man in a bed marking tallies on the wall representing the time he has been sick. He has devices for tube feeding attached to his abdomen. Written on the bed is “Severe ME Day August 8th.” A crow at the foot of the bed says, “Free Whitney Dafoe,” who is a person with severe ME who has been sick and alone in a darkened room for years.

The CDC estimates that 820,000 to 830,000 people have severe ME in the U.S. ME is a kind of torture that takes everything pleasurable from the individual and replaces it with a darkened room where an inert body cries out in agony. There is no cure, and many people have suffered for decades.

New-Ness New Year must mean a new you, right? Well, I'm here in my "can't take this shit seriously" mode to offer you a sweary way to review your year and plan for the next one. New-Ness, a journal for those who hate journals. The details: It costs

New Year must mean a new you, right? Well, I'm here in my "can't take this shit seriously" mode to offer you a sweary way to review your year and plan for the next one.
payhip.com/b/P7e9b

Join us for an online symposium on #SevereMEDay2025, 8 Aug, 2pm (AEST). We'll discuss living with & caring for people with #severeME. Recording available post-event to address accessibility issues. Register here: vist.ly/32ndw 🎤💙🎥

YouTube video by NormalNess 3 Feb 2025

Time lapses I take are mostly of clouds and sky, which means they may have flashing effects in them and be unsuitable for some people.
youtu.be/ap6H90vmWXE

“For example, no number of changes to the environment around people living with chronic pain or fatigue will remove all the symptoms they experience.”
www.abc.net.au/news/2025-08...

Rare to see mainstream publications admit the limitations of the social model. However, I’d have liked them to go into more detail on the human rights model.

How to address the housing affordability crisis for Australians with disability
www.croakey.org/how-to-addre...
#auspol #SDOH

ABSTRACT Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition associated with substantial functional impairment. Although historically considered non-fatal, recent studies have suggested a link between ME/CFS and premature mortality. Objective To update and expand upon previous findings by analyzing reported deaths among individuals with ME/CFS from a public online memorial list. Methods We reviewed 505 entries from the National CFIDS Foundation memorial list as of October 2024. Two coders coded for age at death, sex, year, location, and cause of death. Results The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was associated with the youngest average age at death (43.3 years, SD = 14.4). Conclusions ME/CFS appears to be associated with notable mortality, with suicide, cancer, and cardiovascular causes of death being particularly common. Many entries list ME/CFS or its complications as a cause of death, indicating that notable proportions of affected individuals and those close to them perceive ME/CFS as directly involved in mortality. Increased clinical awareness and targeted screening may be particularly important.

Mortality in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an updated analysis of memorial records

www.tandfonline.com/doi/full/10....

Comment: many people who die in their 70s/80s/90s wouldn't be added to this list so I don't find this evidence very convincing

#MEcfs #CFS

I think I just need to hope I luck out with something very close by but honestly the thought of keeping an eye on posts & the messaging to do all that seems exhausting

Yeah so many lounges are sharp edges too and let’s face it, we need ones we can pass out on 😂