@Rhube@wandering.shop
@Rhube@wandering.shop avatar

Rhube

@Rhube@wandering.shop

She's just this guy, you know?

I'm a science fiction and fantasy writer. I like robots and dragons, silliness and literature.

Used to be an academic; may get too deep into analytic philosophy unexpectedly.

I'm agender and disabled #MECFS

Buy me a coffee on Ko-fi: http://ko-fi.com/drrhube
Tumblr: https://www.tumblr.com/rhube

No unsolicited advice.

Not keen on DMs.

Note: CFS drastically reduces my spoons. If I miss an alt description please don't chastise or quiz me about it.

This profile is from a federated server and may be incomplete. Browse more on the original instance.

Rhube, to random
@Rhube@wandering.shop avatar

So, the admin people at my doctors are high on power and utterly clueless.

In response to my email asking them to provide a medical certificate for my ESA application they pissed about for a few days and then sent an email that just says: 'Usually for this sort of thing, we get sent a form for completion by the patient. What sort of certificate have you had in the past?' instead of forwarding it to my doctor.

I know this is COMPLETE BOLLOCKS. I know because the job centre told me>

Rhube,
@Rhube@wandering.shop avatar

>their receptionist told me, and my friend, who has gone through the exact same process for the same fucking thing (and got a reply the same day) told me.

This is why I hate checking my email - because people reply to me with bullshit like this.

EllisCrawford, to random
@EllisCrawford@mastodon.scot avatar

Regarding some fishing by the UK media for people to share experiences about (DIY) HRT that has been making the rounds, I'm repeating something I posted on Bluesky.

Do not engage with Susanna Rustin on any topic, especially those related to being trans or trans healthcare.

The material she's written in The Guardian, the paper most at the vanguard of stirring anti-trans sentiment in the centre left, is not friendly, fair or objective regarding us.

Rhube,
@Rhube@wandering.shop avatar

@danmcd @EllisCrawford It is a deliberate infiltration of the centre left by the far right. For about a decade they have been using calculated language, co-opted from the left, to make it seem like they are speaking to leftist - especially feminist - voices. For example, they will lipsink to the sex gender distinction to win over feminists, and then collapse gender into sex, performing a bait-and-switch for biological essentialism and traditional gender roles.

In the past five years the mask>

Rhube,
@Rhube@wandering.shop avatar

@danmcd @EllisCrawford >has slipped a lot, with many no longer disguising what they are saying and advocating for. But those voices are now established in traditionally centre-left circles (like The Guardian) in a way where they have become the dominant voices.

And yes, the anti-lgbtq+ groups organising in this country are being bank-rolled in large part by Russia and the American far right. The connections are strong.>

Rhube,
@Rhube@wandering.shop avatar

@danmcd @EllisCrawford >This video centres around JRK, but illustrates the general situation well: https://m.youtube.com/watch?v=Ou_xvXJJk7k

Rhube,
@Rhube@wandering.shop avatar

@danmcd @EllisCrawford there are reporters who are published by the Guardian who still do good, left-wing work - I'm thinking specifically about Carole Cadwalladr (who exposed Cambridge Analytica) and Danielle Lavelle (who has written extensively on homelessness from an own voice perspective) but I have given up following specific newspapers to present a coherent view. I follow reporters, and I do not give money to The Guardian.

Rhube, to random
@Rhube@wandering.shop avatar

Absolutely horrified to learn that Angry Robot were going to feed stories from open submissions into Storywise for 'sorting'.

The AR I used to have close ties to no longer exists. The people I knew have moved on&I haven't edited for them for years, but, for a while, they gave me a connection to the publishing community that was incredibly valuable. That AR would do something so tasteless and immoral puts a terrible taste in my mouth.

They have now backed down, but fuck: https://astrolabe.aidanmoher.com/angry-robot-ai-publishing-storywise/

birdibirdson, to pixelart
@birdibirdson@mastodon.gamedev.place avatar

It's !
I make pixelart and a videogame🌳 🫖

Two pictures: Left: Sheeps are running through the grass around a miniature inside of a round glass flask. Right: Pixel art of the interior of a teapot-shaped wooden house. Inside are a bed, many flowers and books crammed into a cozy space
Pixel Art of a turtle with a glass dome as a shell. Inside the dome, a tiny human has his house with a pond, a tree and a dog. The turtle is underwater and surrounded by fish, jellyfish and corals. The sun shines through the water surface and the waves reflect on the seabed
a forest level of a pixelart platformer, filled with springy mushrooms, moving blocks and a collectable flower

Rhube,
@Rhube@wandering.shop avatar

@birdibirdson Just charming!

Rhube, to random
@Rhube@wandering.shop avatar

The total eclipse I saw in Cornwall in 1999 was one of the worst days of my life. Especially because I had been really looking forward to it.

Anyway, I'll be really glad when you're all done talking about the current one.

Rhube, to random
@Rhube@wandering.shop avatar

Friends don't let friends become landlords.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Full text published today:

Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

Funded by the Open Medicine Foundation

@mecfs

1/

Rhube,
@Rhube@wandering.shop avatar

@tomkindlon @mecfs interesting - on this I would be severe, whereas I thought I was moderate.

Rhube, to random
@Rhube@wandering.shop avatar

Dear Amazon,

I do not understand.

It was already in a box that was the right size.

notes, to longcovid
@notes@social.coop avatar

I got COVID-19 back in mid-February for the first time. I'm feeling a lot better, but I have strange lingering symptoms. It's April 7th. Tired and loss of focus by 2pm, and ever since I got infected, I've been smelling weird odors and having similar aftertastes. Not consistent at all. Has anyone else experienced these symptoms?
@longcovid

Rhube,
@Rhube@wandering.shop avatar

@Frieke72 @notes @longcovid yeah, it's really hard, because if you work, they probably won't give this to you, but by the time you're feeling tired and losing focus you have already pushed yourself too far. You need more rest. If you are working, see if you can switch to part-time as a temporary adjustment. It is so much better to take time out now, before you get as bad as I am, and maybe recover, than it is to push through and get worse.

When you are getting symptoms, meditation can really>

Rhube,
@Rhube@wandering.shop avatar

@Frieke72 @notes @longcovid >help. It lowers your heart rate and helps to regulate your vegus nerve, which the symptoms you mention suggests is disregulated. I recommend yoga nidra or Shabayatra, which involve thinking about parts of the body in turn, and I find much easier and more beneficial than trying to empty my mind or affirmations. Insight Timer app have hundreds of free guided meditations and soothing soundscapes (including caps purring).

Even a ten minute break to meditate can help.

Rhube,
@Rhube@wandering.shop avatar

@graviton @Frieke72 @notes @longcovid big time sympathy, I find rest unutterably boring.

Meditation can help as a guided activity where you're kind of letting someone else do the thinking for you, but I do struggle to not get bored of doing that. It can help to have several reliable ones you like in rotation.

I've also got an Audible subscription and have taken to listening to audiobooks. I prefer non-fiction to fiction as I don't have to follow a plot. Great Courses lecture series from>

Rhube,
@Rhube@wandering.shop avatar

@graviton @Frieke72 @notes @longcovid >the Teaching Company are usually pretty good in that I feel that I can learn things without taxing myself too much. It's a good compromise between complete , but excruciatingly dull, rest, and something more active or too stimulating.

Rhube, to random
@Rhube@wandering.shop avatar

Rereading the Prologue of the Fellowship of the Ring is reminding me how very badly the Peter Jackson films got hobbits wrong by excessively cutesifying them. Tolkien emphasises that although easy to underestimate, and enjoyers of nice things, hobbits are tough and perfectly capable of being badasses. They are small people, not overgrown children.

CultureDesk, (edited ) to books
@CultureDesk@flipboard.social avatar

In celebration of the 50th birthday of Stephen King's first novel, "Carrie," NPR polled its readers on their favorite King books. Here's what they chose. Which is your top pick? Tell us in the comments if there's a gem that didn't make the cut.

https://flip.it/f9sriI

@bookstodon

Rhube,
@Rhube@wandering.shop avatar

@CultureDesk @bookstodon lol - The Stand is a Dark Tower book.

Rhube,
@Rhube@wandering.shop avatar

@dfrancis @CultureDesk @bookstodon tbf, I said that and realised most of the list were. But I would argue that The Stabd has the most direct Dark Tower content. I mean, the Ageless Stranger is there as the main antagonist.

Rhube, to random
@Rhube@wandering.shop avatar

I'm glad that that Guardian article ppl are passing around today encourages vaccination, but it unfortunately contains misinformation that states prior infections and previous vaccinations (more than 6 months ago) already provide good protection. They just don't! Not if it was over 6 months ago, and not against Long COVID, which is a risk that goes up with each infection.

I cannot, therefore, in good conscience, boost it.

Which pisses me off because we NEED more national coverage of this!

mekkaokereke, to random
@mekkaokereke@hachyderm.io avatar

Honest question for white people that don't consider themselves racist:

White nationalists have been vocal about their attacks on DEI. These are literally the same people that talk about Charlottesville, Jan 6th, and ethnic cleansing.

They've laid out exactly how they plan to destroy DEI.

  1. Make false claims that DEI is about giving unqualified Black people an unfair advantage

  2. Work with racist politicians to use this as a pretext to make all DEI programs illegal.

1/n

Rhube,
@Rhube@wandering.shop avatar

@mekkaokereke They're attacking disabled people and trans people too, and that's part of the reason I am now out of work. I was part of my work's DEI programme. I worked with Black and other marginalised colleagues to resist changes that removed 'inclusivity' from our values. Marshaling the other ERG leaders to take concrete steps to communicate with the executive and addressing them in language that would be persuasive heavily impacted my own health. We didn't get our leaders to put inclusivity

Rhube, to gardening
@Rhube@wandering.shop avatar

Wisteria leaves starting to open. Chives staring to bud. @gardening

A couple of large leaf buds a bit farther on starting to bud against a red fence.
A single chive bud amongst chives against a red fence.

Rhube, to random
@Rhube@wandering.shop avatar

Trans people are great, actually. Shout out to everybody who has found the courage to be themselves.

And also to those who want to but it wouldn't be safe, or they're just not ready yet. It's OK to not want to be visible too.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
"Why it's important that PEM is not fatigue"

https://mecfs.substack.com/p/why-its-important-that-pem-is-not

"*PEM is post-exertional malaise, also known as post-exertional symptom exacerbation. It is a symptom of ME/CFS and is also found in many people with "

@mecfs

1/

Rhube,
@Rhube@wandering.shop avatar

@tomkindlon @mecfs 'mere' fatigue. I'm so angry with the ableist **** who wrote this. Fatigue is NOTHING 'mere'. (Not directed at Tom, of course - at the paper.)

Rhube,
@Rhube@wandering.shop avatar

@JetlagJen @tomkindlon @longcovid @mecfs ' if I do too much lots of symptoms get worse, including the fatigue.' That's PEM. And it sounds like you already know how to distinguish what fatigue is.

It matters what it's called because fatigue is an extremely debilitating element that is often dismissed. As it was in this case.

I'm not willing to be quizzed any further on a sensitive matter over a week after I was talking about it. I do not have the spoons.

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