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The pain from my walk earlier is now really setting in. I don't regret anything but I really wish I didn't have to pay this price every time.

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Beautiful button orchid growing on a palm tree.

17/01/24 - Dischidia nummularia

QLD:WET - Cairns

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The river walk was absolutely amazing! The path was good enough quality for my wheelchair and it was so beautiful

ID: a photo of a river running over rocks through woodland. There are rocks at the bank of the river. The trees on each side of the river have bright green spring leaves and there are branches overhanging the river. /end ID

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I wonder how different society would be if the abuse schools commit was officially acknowledged as abuse.

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I’m trying a new walk tomorrow that’s supposed to be wheelchair accessible! It’s a couple of towns over and runs along a river and all the photos look gorgeous.

The photos remind me of a walk I would do a lot as a child but can no longer manage so I’m really excited!

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I love sunflowers so much truly a marvelous plant

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Y'all, the world is sleeping on what NASA just pulled off with Voyager 1

The probe has been sending gibberish science data back to Earth, and scientists feared it was just the probe finally dying. You know, after working for 50 GODDAMN YEARS and LEAVING THE GODDAMN SOLAR SYSTEM and STILL CHURNING OUT GODDAMN DATA.

So they analyzed the gibberish and realized that in it was a total readout of EVERYTHING ON THE PROBE. Data, the programming, hardware specs and status, everything. They realized that one of the chips was malfunctioning.

So what do you do when your probe is 22 Billion km away and needs a fix? Why, you just REPROGRAM THAT ENTIRE GODDAMN THING. Told it to avoid the bad chip, store the data elsewhere.

Sent the new code on April 18th. Got a response on April 20th - yeah, it's so far away that it took that long just to transmit.

And the probe is working again.

From a programmer's perspective, that may be the most fucking impressive thing I have ever heard.

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ID: A cropped photo of text from a letter reading “EPIOC Delivery. Date: Wednesday,May 8, 2024 at Before 1:00pm”

The excitement on reading this was joyous and overwhelming – I was like one of those videos of children opening Disney tickets and happy stimming with a huge grin

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Disregard everything I just said about not knowing when I’ll get my new chair – I just got home from another doctors appointment and my wheelchair letter was waiting for me as I got home!

I’m getting my chair on 8th May!!!!!!!!!!!

Less than two weeks time!!!!!

My body will be at right angles again!

The headrest will be properly attached and will reach my head!

The footplates won’t fall off every time the van hits a pothole!

Four point chest harness my beloved!

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I feel like I’m getting somewhere medically. My GP reckons my symptoms are mostly because my current borrowed wheelchair isn’t (and to a lesser extent my old wheelchair wasn’t) meeting my postural needs and my breathing has been more restricted which is causing more issues (because oxygen is important). We’re running some tests to check there’s nothing more sinister going on but it’s a pretty good explanation I probably should have thought of myself.

Which means that hopefully my new wheelchair will make things easier when it eventually gets here. I was initially told that it would be around May time, but I still haven’t had the letter with the appointment date so I’m suspecting that it might be a longer wait than anticipated.

And also fuck the tories for taking funding away from the nhs and wheelchair services causing horrendous waiting times with people trapped in bed or inadequate wheelchairs for months or years at a time and all the health problems that causes.

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Today I have another attempt at getting a doctor to take my new symptoms and unusual test result combo seriously.

Even if it is explainable with my current diagnoses it would be nice to just get a decent explanation a plan for how to manage it would also be great but baby steps).

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As a wheelchair user I'm trying to reframe my language for "being in the way."

"I'm in the way," "I can't fit," and "I can't go there," is becoming "there's not enough space," "the walkway is too narrow," and "that place isn't accessible."

It's a small change, but to me it feels as if I'm redirecting blame from myself to the people that made these places inaccessible in the first place. I don't want people to just think that they're helping me, I want them to think that they're making up for someone else's wrongdoing. I want them to remember every time I've needed help as something someone else caused.

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Real conversation I had on zoom:

[talking about marathons]

Me: there’s no way I’d be able to finish a marathon

Person: that’s such a fixed mindset! If you open your mind to the possibility I’m sure you could do it!

Me:… I mean I also can’t walk so I think it’d take a bit more than an open mind.

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So. While the current arsehole serving as UK PM is currently coming out with all kinds of nasty policies to appeal to the worst of his voter base, I wanted to say two things to fellow disabled and long term sick Brits.

Firstly, Sunak does not believe he or the Conservatives are going to be in power by the end of the year, so most of this shit isn't going to happen. While the alternatives are also not great, they are marginally less horrible.

Secondly, if/when you are forced to go through a Work Capability Assessment, it is your right to demand it be recorded. They will try to dissuade you, but you can refuse an appointment unless and until they agree. You receive a copy of the recording (just put it somewhere safe, don't listen to it unless you need to). Now you have concrete proof of what happened in the assessment, which makes it harder for them to screw you over.

My last WCA was during lockdown, so it was a remote one. It was delayed for 2 months because I demanded a recording. And it was the second time ever in 15 years that I didn't have to go to tribunal. I also was moved from the limited work group to the support group.

Hopefully this helps someone. Hang in there everyone. We are worth it.

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Inspiration comes from the oddest places. This one was inspired by the colour scheme of my Dad’s newest golf shirt.

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It was a little boring but I survived even without coffee!

On a more serious note though, no one should have to sit in a used nappy for several hours just to go to work. Changing places toilets need to be everywhere and just aren’t

I had to get up at six this morning to go to a conference thing today with work.

It’s about an hour away and there’s no changing places toilet nearby which means I’ll need to be dehydrated all day. I also had to forgo my morning coffee

Wish me luck