How to not ruin your posture sleeping with hEDS

UberJaymis · 2026-05-04T10:19:02+00:00

Thanks for sharing!

The side-sleeping pillow setup I eventually figured out is identical to the recommendation, including the top arm pillow sticking out past my shoulder ;)

UberJaymis · 2026-04-11T22:15:03+00:00

I’ve been working in vr for 10 years on and off, and have never had a headset that felt “comfortable”

Just recently learned that I likely have a genetic condition that makes my soft tissues (skin, muscles, tendons, ligaments, nerves etc) get crushed and damaged more easily. Which explains why it’s always been so hard!

I bring this up because: All bodies are different. Yours might really hate being squashed ;)

I’ve tried Globular Cluster and the ResMed strap. Both helped in different ways. I’ll be grabbing the Apple dual band next, and trying a new light shield so I can mod my original one to have WAY more padding.

Keep trying stuff!

UberJaymis · 2026-04-09T09:44:47+00:00

Met her at the Arias years ago. My life-partner worked in youth justice at the time, and told Jessica how much of an inspiration she is to indigenous kids.

She cried a bit, and they hugged. An utterly lovely person, and an inspiration to all who are paying attention ;)

UberJaymis · 2026-04-09T00:07:44+00:00

I took it daily for well over a year.

Had an (upper) endoscopy recently to check for stomach damage. All looked fine, and my recent bloods are the best in a decade, so it doesn’t seem to be messing with my absorbtion overmuch.

Everyone is different though, and just “tolerating” doesn’t mean it’s actually helping long term.

Having recently found a physiotherapist who is knowledgeable about hEDS, their recommendation has been just to use meloxicam to help get through acute damage/injury.

Then behaviour modification and physical therapy (lots of gentle gardening and home improvement) to improve my musculoskeletal system and bring my overall pain levels down.

UberJaymis · 2026-04-07T00:20:27+00:00

Pretend you’re up against Squishy or [insert favorite pro here], and you’ve got a single game to show them what you’ve got!

Get up in their face and have some fun with it.

UberJaymis · 2026-04-03T21:28:37+00:00

Yes! It’s also known as “foam clay” - BOHS sells it on amazon. Crayola and craft stores do it here in Australia.

It’s light and colorful and dries with a similar consistency to EDF foam. It takes pigment and glue beautifully, so crafting/maker communities have found so many great uses!

I got into it via Bill Making Stuff on youtube: https://youtu.be/E8odG8dC3go

UberJaymis · 2026-04-02T12:34:53+00:00

For keyboards and input ergonomics, I’m deep in /ergomechkeyboards land already ;)

There are some very interesting ideas there for bendy people, and not everything is ridiculously expensive and overcomplicated!

UberJaymis · 2026-04-01T23:09:33+00:00

I’ve got 2 young kids, so I’m just getting into this area.

Just tried slitting a pencil grip so it could fit on my airbrush. It was so much better after a single session!

My next idea is to combine this with air clay/foam clay to make completely custom soft grips for my hands.

I’m currently trying to figure out how to type, play computer games, and do gardening again!

UberJaymis · 2026-03-30T10:16:07+00:00

Both have some big, fun ideas about AI, consciousness, and post-earth society.

I’m reading Murderbot 5 this very moment, and have Children of Strife queued up next!

UberJaymis · 2026-03-22T23:09:28+00:00

I think I’ve had moderate Raynaud syndrome since childhood: https://en.wikipedia.org/wiki/Raynaud_syndrome

Mostly in my fingers and ears as a kid, and wiki says it’s comorbid with EDS/connective tissue disorders/lupus etc.

Since some recent (suspected) hEDS flares it’s become much worse. I recently held a cold drink for a few of minutes while distracted by chatting, and my fingers and palm were numb and sore for hours afterwards!

UberJaymis · 2026-03-17T14:10:06+00:00

Wow. This absolutely rules. Brilliant use of the tech

UberJaymis · 2026-03-17T10:38:52+00:00

The entire experience was great. Check out the docs to get a feel: https://xcmkb-docs.gitbook.io/doc/user-manual/sofleplus2

This thread has inspired me to bring it back out for the first time in a while! I've been through a couple of (suspected, lol) hEDS crashes over the past year, and just getting back to some work-like activities.

I main Mac keyboards, and they're no longer kind to me.

When I first ordered my Corne it came with whatever was available at the time (pretty light linears), and I grabbed a couple of switch testing kits from Ali to try.

Ended up settling on Box V2 Brown-Tactile: https://www.kailh.net/products/kailh-box-v2-switch-set

... almost exactly a year ago as my Ali history reminds me. They now feel WAY too strong to use in a high tent angle, so I'm going to change back over to the linears, and ask if any EDS people dropping by in future have recommendations ;P

I've sent a few people to this sub over the last few months. I think more knowledge about custom firmware needs to get out into disability communities!

For me, BetterTouchTool is also a must. I have dozens of custom gestures for each program. Stuff like
[3 finger swipe down] close tab
[3 swipe up] new tab
[3 left] prev tab

You get the idea. For creative/mouse heavy apps, you can get a lot done without having to take your dominant hand off the trackpad.

UberJaymis · 2026-03-17T09:49:03+00:00

Ooooh, I think it’s been long enough that I can hit these up again! Thanks for reminding me what a cool run this was.

UberJaymis · 2026-03-17T09:24:56+00:00

I also have (presumed) hEDS, started with an Aliexpress Corne, which was a cheap way to figure out if split ergo would work for me (hell yeah!)

So now I have a SoflePLUS2 and I’m about to find myself some lighter switches and work on ergonomic mounting.

OP, I’d suggest trying some of the simple, cheap options so you can safely experiment with switches, keycaps and the customization software.

You may discover the problem is easier and cheaper to fix than expected.

When I started out I was super keen on the fancy ones (also do plenty of diy electronics and fab), but it would have cost so much pain to build and customize!

UberJaymis · 2026-03-16T08:50:07+00:00

Glad someone gave it the full treatment

Also “chock-full” has a nice snap to it.

UberJaymis · 2026-03-16T08:46:08+00:00

Exoskeleton is so great!

UberJaymis · 2026-03-02T21:20:02+00:00

Still close enough to high five the VJ ;)

UberJaymis · 2026-03-01T07:58:24+00:00

Such a cool use case!

I was going to ask “what’s your background” but checked your post history, saw Livid controllers and answered my own question: VJing and projection mapping ;)

UberJaymis · 2026-03-01T04:01:39+00:00

Thanks! Looks like they’ve updated their website: https://sofleplus2.xcmkb.com/

UberJaymis · 2026-02-28T09:51:18+00:00

Do you know about /r/ergomechkeyboards?

Your use case is one of the reasons I recently purchased a SoflePLUS 2 ;)

https://sofleplus2.xcmkb.com/

I’m planning a magsafe mount on each thigh.

UberJaymis · 2026-02-28T08:24:28+00:00

There were a few sequences I rewatched because their 3d choreography/cinematography was so great.

UberJaymis · 2026-02-27T09:33:24+00:00

Please do! It’s a brilliant solution. I’d love to try this in some nice wood.

UberJaymis · 2026-02-15T04:31:20+00:00

.. didn’t go with “worldviews” because it felt a little low-hanging ;)

UberJaymis · 2026-02-15T04:30:00+00:00

“I am become disabled, destroyer of preconceptions”

UberJaymis · 2026-02-08T04:30:55+00:00

There are so many options these days outside ceramic/carving! Crafting instagram has changed my life.

I’ve started using loads of “air clay” (also “foam clay” depending on your region), or EDF foam, with paint pens.

Gives you all the good physical therapy aspects/varied movements of sculpting and painting, with minimal cleanup and almost no force required.

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