WearyBonnie

Chronically ill with #POTS (Postural Orthostatic Tachycardia Syndrome), living on unceded Whadjuk Noongar land. Quietly obsessed with the musical Tanz der Vampire.
~* Transphobic 'feminism' is garbage *~

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npub13fzn0683yy3dxu8re2xrxz8uczfl62sz80mcwud6jz84tm6xg8yqz3wqea

NIP-05 Address

3TomatoesShort_at_disabled.social@mostr.pub

Profile Code

nprofile1qqsg53fharcjzgknwr3u4rpnpr7vpyla9gprhau8wxafpr64aaryrjqprpmhxue69uhhyetvv9ujumn0wdmksetjv5hxxmmdqy2hwumn8ghj7un9d3shjtnddaehgu3wwp6ky62kqw8

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relay.noswhere.com

relay.mostr.pub

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npub13fzn0683yy3dxu8re2xrxz8uczfl62sz80mcwud6jz84tm6xg8yqz3wqea

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Last Notes

2024-09-12 09:16:47

*resets the Days Since Abled Nonsense sign to 0*
Disabled person: this thing happened to me
Abled stranger: I don't think that really happened because it would be in breach of regulations
🫠
Right. No one ever breaches regulations, anywhere 🫠🫠

2024-08-28 01:39:17

#food
My "I eat this because it seems not to do me any immediate harm" breakfast has gradually morphed into something which would make me sound like a complete wanker if I had to describe it accurately for one of those "A day in the life" magazine segments that rich people do 🤪

2024-08-20 09:25:09

- reply

@npub1pmx…exkq
If that's the plain language summary I think I'm going to struggle with the full text 🙃 but I'll give it a go! 😅

2024-08-20 04:12:53

In better news, I finally found the very hungry caterpillar who has been eating my citrus hystrix, and moved them to some weeds. Bit of a downgrade honestly, these leaves taste incredible 😅
https://assets.disabled.social/media_attachments/files/112/992/398/405/544/529/original/8baa801eefe3decd.jpg

2024-08-11 01:26:04

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@npub1ugl…yvd7
Oh nooo 😭

2024-08-11 01:01:08

My neighbours' snowpea plants are SO tall now. Everytime I see them when I'm opening up my windows I feel jealous. I want snowpea plants 🥲
(I swear to god if you reply saying how EASY growing plants is I will block you even if we previously got on well, don't fucking test me on this. Nothing is SO EASY when you're lying in bed with PEM feeling like hot garbage. I hate that I need this disclaimer but evidence suggests I fucking do 🤨)

2024-08-06 01:42:50

#BloomScrolling
Happy 'First Open Flower on the Guichenotia Macrantha Plant' Day, to all who celebrate!! 🥳
https://assets.disabled.social/media_attachments/files/112/912/536/044/429/700/original/87b9838a92f4fc65.jpg

2024-08-01 05:39:35

When I told my husband last night that I was having my first ever perimenopause hot flash, he said: that's exciting!!
So I feel like I deserve some recognition for protecting this man from my PMS for 25 years, apparently?? 😅
He was also not in the room when my GP told me that having had PND twice, it's a fairly safe bet that I'm not going to have a good perimenopause 🫠

2024-07-29 07:38:03

I know people think Australian animals are freaky but omg, HARES 😳
You can't tell me they're not plotting something.
They feel like they're the drop bear of the rest of the world.

2024-07-28 04:43:01

Finally a touch of pink on the guichenotia macrantha flower buds 🥰
I'm so excited to see it in full bloom this year, it has so many more buds than it did in the last 2 years.
I collected some seeds previously that I want to try germinating, too 🤞🏻
#BloomScrolling
https://assets.disabled.social/media_attachments/files/112/862/283/476/441/422/original/c13be57299bf858e.jpg
https://assets.disabled.social/media_attachments/files/112/862/283/695/736/176/original/85bba14e15b38d9b.jpg

2024-07-22 00:45:30

Really craving pickled onions at the moment, but every time I add them to the grocery order I get a jar where almost all the onions are yellowish and spotty, not the nice crunchy ones :(

2024-07-18 09:20:16

There’s some good in this world, Mr. Frodo. And it’s worth fighting for.
🥺
God I feel starved for hopeful news 🥲
https://mastodon.social/@ScienceScholar/112805610631567135

2024-07-05 01:42:45

Eeee my parents have a tawny frogmouth in the tree next to their balcony!! 😍

2024-06-23 02:40:33

The other day I had to tick a user agreement type thing in an app, after my new hot water system was installed. It wouldn't work, and eventually the installer said "you might need to pull down your mask, it takes a photo" and like.. I'm just realising now that if I hadn't been wearing a mask, no one would have told me it was taking a photo of my face??! 😱
Edit: User agreement is probably not the right terminology 🤷🏼‍♀️

2024-06-19 08:02:34

Feeling very sad today about all the gardening I can't do because of my illness 🥲

2024-06-08 09:36:10

#BloomScrolling
Pincushion hakea featuring honeybee 🥰
https://assets.disabled.social/media_attachments/files/112/580/320/963/316/512/original/016d97d02221dd41.jpg

2024-06-03 03:01:00

Contentment 🥰
https://assets.disabled.social/media_attachments/files/112/550/455/491/631/332/original/ddd9e3dca8fce0ed.jpg

2024-06-01 20:20:16

Gosh, 41mm of rain since since 9am yesterday ⛈️

2024-05-17 08:17:14

It is goddamn hilarious to me seeing people say they feel wary of people in masks/respirators in case they have covid and went out anyway.
Buddy.
Stop and think about how the people in the masks feel about you and all the other maskless people spreading covid all around them 🙃

2024-05-13 06:15:20

There's a certain kind of bicycle advocate who is determined to override any reason you might have for not cycling with their impressively logical arguments, and all it does is stop me from trying to find solutions that could work, because I don't want some abled jerk who has no understanding of chronic illness telling me my lived experience isn't what I know it to be 🙃

2024-04-30 08:54:35

I want a lifestyle & gardening show featuring only disabled people 🥺
Can you imagine all the clever tips you would learn?? Instead of clueless ableds constantly being chipper and saying daft things like "anyone can do this!"
(Yes I am watching Gardening Australia again 😅)

2024-04-29 01:19:50

I can't believe we got consumer-level VR headsets before we got a robotic solution to dusty bookshelves. Where is my little robotic dust-eating silverfish??

2024-04-24 12:47:20

It's so cool having so many people in my online world who can relate to normal everyday stuff like having to pace in order to have enough energy for a shower. I don't have many (maybe any tbh) people I know in real life who understand what energy-limiting chronic illness is like, I really appreciate the community on here ❤️

2024-04-21 03:44:36

The plan: spend my next bit of energy installing ink in the printer
What actually happened: recreated the Sickos meme, standing grinning at the window while a flock of silvereyes harvested lerps on the tree just outside the window
https://assets.disabled.social/media_attachments/files/112/307/147/369/471/603/original/fefd0844ba2e7331.jpg
https://assets.disabled.social/media_attachments/files/112/307/147/622/825/775/original/6ee0404b8d941c98.jpg

2024-04-18 04:14:53

If you feed local birds directly, you might be helping those birds (could also be harming them though!).
If you feed them indirectly by planting local plant species, you help the birds, the soil, the air, countless different kinds of bugs and critters and fungi and things you'll never even see.
It's pretty neat.

2024-04-10 05:22:45

"Perth has just endured its driest six-month spell since records began almost 150 years ago"
Still no sign of it ending either 😭😭

2024-04-07 03:46:53

#BloomScrolling
The kind of fireworks that are actually good for wildlife 😁
https://assets.disabled.social/media_attachments/files/112/227/884/276/224/274/original/9896e7312d052941.jpg

2024-04-07 00:22:53

Long COVID denialism puts you on the wrong side of history
https://medium.com/@frogsandstars/long-covid-denialism-puts-you-on-the-wrong-side-of-history-b86ccbb5ab6c
> Imagine, just for a moment, that HIV/AIDS was spoken about in the media with the same denialist language that is often used to describe…

2024-04-04 00:42:52

Supposed to be seeing my little niblings for the first time in AGES this weekend (outdoors). I miss them so much. Now one has covid, and my sister in law. I hate this fucking timeline 😭

2024-03-23 04:41:05

I have pulled a muscle in my shoulder by sneezing 😭
https://assets.disabled.social/media_attachments/files/112/143/162/702/371/463/original/ddbdac60d91df250.jpg

2024-03-21 23:47:48

- reply

@npub1gmx…atcq
Our local blood place runs these reverse-psychology "10 reasons NOT to give blood" ads, but they always forget to mention this reason: you have to opt in to the risk of permanent disability because they can't be bothered making themselves accessible 🙄

2024-03-18 23:58:10

#BonniesBoringLifeAdmin
Right, gotta schedule some time fairly soon to update my agenda document for my upcoming GP appointment - trying a bunch more things since last time I went.

2024-03-15 05:36:12

I looked up pumps years ago especially so I could learn the shoe taxonomy, and now people are calling a completely different kind of shoe pumps?? No.

2024-03-15 01:26:04

Literally no one with ME/CFS has ever been like "actually it's no big deal, I wouldn't have done anything to prevent this condition if I could have, chill out, you won't mind joining this club at all!"
Fucking public health officials, on the other hand 🙃
The bad ones do not care about public health, AT ALL. They do not care if you spend the rest of your life in bed, unemployed, and impoverished.

2024-03-14 13:40:06

Hey so ableism isn't actually okay no matter how much of a shit that person is or was, or what damage they did. Just like we can only get human rights for everyone by making sure the 'worst' people get human rights, we can't get accessibility and disability justice for everyone if we're doing ableism on certain people as a form of revenge. IMO.
I do thinking wishing people get what they deserve is fine though, so make of that what you will 🤷🏼‍♀️

2024-03-13 01:33:36

I've never had a fantasy football team but I do kind of have a fantasy medical team 😅
Entirely composed of either patient experts or doctors/researchers I've come across via social media, and entirely unreachable from where I live 🙃

2024-03-12 01:35:25

- reply

@npub19dj…n6qc
*Before reading the text in the images*
I bet she was told she was anxious.
...
Of course.

2024-03-12 01:27:15

The cognitive dissonance of knowing that long covid science IS moving too slowly because people need help NOW, but also having your brain go 🙃 when you see it described as moving too slowly because you've also seen the way in which ME science has been done in the last 30 years, and the incredible progress that's happened in the last 4 years 😫

2024-03-08 00:44:22

Anyone have a hot tip on easiest (+ safest) ways to clean very well established layer of green gunk from inside a birdbath, apart from elbow grease? I read that you should use vinegar and not detergent so as not to risk harming bird's feather waterproofing, but vinegar and elbow grease isn't working terribly well. Don't have a high pressure cleaner unfortunately.

2024-03-05 03:50:35

Honeybees are neat but did you know there are soooo many kinds of native bees and wasps that are diverse and fascinating and unique to your area?? Worry about them as well as honeybees!
If you're lucky enough to have custodianship of a patch of ground you might be able to significantly improve their local habitat! 😍

2024-03-05 01:00:06

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(sorry for the strident tone, but I'm sick of seeing articles etc casually blaming lockdowns for problems they shone a light on, but DID NOT CAUSE)

2024-03-05 00:46:12

If covid lockdowns helped some kids realise there were options in life aside from going to school every day and being made miserable as a result, and they didn't want to go back to school after the lockdown, THE LOCKDOWN WASN'T THE FUCKING PROBLEM, WAS IT??

2024-03-01 02:10:13

- reply

@npub1t3d…qnlg
I'm often mistaken as abled because people forget (or never learnt) that invisible disability exists.

2024-03-01 01:53:53

From video in the last boost: over 80% of the deaths due to heatwaves in Australia are of disabled people 😱😡

2024-02-29 01:07:57

Employers and governments should be shamed for creating the conditions that lead to workers coming in to work while sick.
I'm sure there's the odd boofhead who would go in even if they didn't have to, but surely the vast majority would prefer to rest at home.

2024-02-24 02:18:12

- reply

@npub1d7t…2f20
😥
About AUD$30 here
https://www.healthylife.com.au/products/ivabradine-coralan-5mg-56-tablets

2024-02-23 08:49:54

#POTS Pals in Australia, if you've been wanting to do recumbent exercise but the equipment has been unaffordable, there's an unusually cheap Pilates reformer coming up in Aldi's Special Buys on March 2nd!
https://www.aldi.com.au/special-buys/special-buys-sat-2-march/saturday-detail-wk09/ps/p/reformer-pilates-machine/

2024-02-22 00:23:51

Yay, got the "first day of school" photo done!
(I maintain that you have to be scarily together and organised to do this on the actual first day - I'm happy with any time during term 1, personally)

2024-02-16 04:21:03

- reply

@npub1qk5…jlda
Thanks. I think this is the highest forecast maximum I can ever remember seeing here. We're used to a few days of 41-42, but this summer we keep getting 43s :(
I'm glad you're not in that situation any more!

2024-02-16 03:57:27

THE FORECAST FOR SUNDAY HAS GONE UP TO FORTY FUCKING FIVE DEGREES CELSIUS 😭

2024-02-10 03:56:56

'"I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."'
🥺

2024-01-31 03:33:16

*sigh*
Was just sent an article titled 'broccoli could hold the key to treating autism'.
Can I just throw the broccoli at the article's author, and anyone making life more difficult for autistic people in general?

2024-01-29 02:23:19

While there's a lot of talk about fatigue going around, here's your regular reminder that you might as well do an active stand test to check for #POTS: it's absolutely possibly to have POTS and not be aware of your racing heartrate, not ever faint, and to have fatigue as your most obvious symptom.

2024-01-23 10:21:55

Might have to give up on the attempt to finish top of the diamond league in Duolingo, the aftereffects of the GP appointment have kicked in and my brain is saying no thank you to cognitive effort :')

2024-01-22 11:33:43

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@npub1jgx…xtkz
Whaaaaaaatttttt?!?
This makes so much less sense to me than when HCW just don't care at all. How can they be disapproving of everyone else and STILL NOT MASK??? I wonder if maybe they just don't believe in asymptomatic transmission? 🤨

2024-01-21 01:58:01

This is really good.
"The COVID-safe strategies Australian scientists are using to protect themselves from the virus"
"Australians can and should take precautions against COVID to reduce transmission and protect their health, experts say."
https://www.abc.net.au/news/2024-01-21/covid-safe-strategies-australian-scientists-virus-infection/103335466
#CovidIsNotOver #CovidIsAirborne
@npub1j92…6nfj

2024-01-19 08:56:46

*Literally any company asks me for some form of opinion or feedback*
Me: "Ok, are you sitting comfortably? Got a pen? I'd like to talk to you today about the measures you're taking (or not taking) in reference to the ongoing mass-disabling pandemic, and the ongoing climate crisis. Any questions before we start?"

2024-01-15 16:01:17

FFS, I am not only writing and deleting toots but now I'm also writing and deleting the toots about writing and deleting toots, send help¹
¹literally any kind of outlet where I can actually feel safe being candid and not feel like I'm gonna accidentally cross other people's boundaries by being open, argh 😫

2024-01-13 08:13:50

FFS, why did Flo have to introduce pretty patterned/coloured mask covers right AFTER I just spent $98 for the shipping on my previous order?? I cannot spend that again just for prettiness 😭😭😭

2024-01-12 02:38:53

- reply

@npub1mm5…9qt8
Me in 2019: "ugh I wish more people knew about POTS :("
Me now: "wait no not like that 😭"
😔

2024-01-08 07:01:45

A weird nice thing about the pandemic is that I no longer suffer from imposter syndrome. I've seen so many people in fancy important jobs say so many self-evidently daft things that I just no longer assume that people in fancy, important, or well paid jobs are any more capable than I am, as a default assumption.

2024-01-02 15:30:03

Maybe I am overthinking a joke toot but now I'm curious: when drinking a hot drink in a mug, do you reckon you usually hold the mug in your dominant hand or non-dominant?
Or is it purely determined by things like what side your bedside table or coffee table is on? 🤔

2023-12-27 02:11:23

- reply

@npub1q9m…zgdu
JfC, the husband mentioned in the article doesn't sound like much of a "best friend and soulmate" if he won't adjust his lifestyle in the slightest to account for his wife's new reality 😡

2023-12-09 02:22:19

Aaargh why are so many research studies like this?
"When did you first see a doctor about your POTS symptoms?"
Idk, is that when I went to the GP because I already suspected I had POTS, is it one of the many many many times I went and said "I'm still much more tired than I should be", or one of the many childhood visits which could be related to POTS but we'll never know because no one tested me until I diagnosed myself in my late 30s?

2023-12-08 06:01:18

Ok, so. This is the first menstrual cycle I've had in ages where my #LDN is causing #gastroparesis, AND I think it's also my first #anovulatory cycle in ages.
I don't suppose anyone has experience of taking LDN either side of #perimenopause/#menopause and whether the side effects changed?

2023-12-08 02:30:52

I've just realised Spotify is pretty bloody expensive considering I mostly listen to 1 album (I did try to switch to Bandcamp but that album wasn't on there). I'll have to check if my husband is using it, if he isn't it might be worth travelling back to the .. 90s? Noughties? and just buying a CD and ripping it to MP3 🙃

2023-12-06 02:31:53

- reply

@npub1u37…rd5c
It sucks, doesn't it :(
The only thing that helps me feel slightly better is attempting to contribute to the formation of strong, supportive communities with community care as a focus. I think having a clear vision of the alternative future I want to come about is a big help emotionally.

2023-12-03 01:57:42

If you grow up somewhere that's snowy and frosty, is it hard to comprehend how unbelievably magical snow and frost looks to those of us from nonfrosty climes? 🥺

2023-11-29 11:36:05

Appreciation post for this little eucalypt in my garden. It's growing in the sandpit, which doesn't seem to bother it at all, and as the surrounding trees have grown up and cast shade, this little fellow has stretched over toward the house to provide shade just where we need it 😍
It's always covered in weird little critters and the birds and bees love the flowers. Good work little tree!
https://assets.disabled.social/media_attachments/files/111/493/628/517/999/300/original/d03b6d5a4ba5c420.jpg
https://assets.disabled.social/media_attachments/files/111/493/628/874/401/502/original/cffe2747bf363575.jpg

2023-11-26 09:05:13

- reply

@npub1h4u…cnpk
Is there some compelling reason to switch, beyond my not finding the vaults in 1Password intuitive?

2023-11-26 08:39:06

Why are 1Password vaults so hard to understand 😭

2023-11-22 18:24:46

- reply

@npub19dj…n6qc
@npub1e8a…ywn3
I hope you're able to rest now ❤️
I love this quote though, I feel like "do not seize the day" has become my motto, an unspoken, deeply embodied mantra guiding me through these years.

2023-11-21 01:16:13

It's pretty bittersweet seeing so many wholesome, moving posts about how much libraries have meant (and still mean) to people as a welcoming, inclusive public space when none of my local libraries have done anything (unless they're doing it secretly, which would be odd) to reduce airborne viral transmission risk during a global pandemic.
Inclusive my butt.

2023-11-18 06:07:41

I remember deciding to have my coffee, I remember changing the bean strength on the machine so it wouldn't turn itself off before I was ready, then I made lunch for one of the kids, and then I put a bunch of recycling and rubbish out, and I have no idea whether I ended up making and drinking a coffee :/

2023-11-10 01:32:12

- reply

@npub19dj…n6qc
Yeah, I hate it :(
I can't remember the name but I've seen a great organisation doing advocacy around this, I think especially with reference to facial differences.

2023-11-09 19:19:42

Ugh. Watching Swap Shop & apparently this old wheelchair is perfect for Halloween decorating/haunted houses. Because apparently mobility aids are automatically creepy 🤨😒

2023-10-24 17:31:19

I'm slowly starting to understand how the fediverse works, and the more I understand, the more it feels like the "clunky but we made it work" technology scrambled together by the resistance in Star Wars, but also somehow with Firefly and Red Dwarf vibes.
This is actually immensely reassuring to me.

2023-10-22 10:41:32

Took my book out to the garden to read for a while, witnessed an epic battle between two skinks. So much chomping! 🦎
https://assets.disabled.social/media_attachments/files/111/278/245/685/419/006/original/061541770544bc2e.png
https://assets.disabled.social/media_attachments/files/111/278/245/917/028/035/original/cfdefa2f9670ba07.png
https://assets.disabled.social/media_attachments/files/111/278/246/243/150/542/original/adad500b027f63f1.png
https://assets.disabled.social/media_attachments/files/111/278/246/549/281/217/original/209bed6b0dbd7493.png

2023-10-19 11:33:16

I really miss the stay at home era when people were making really fun collaborative YouTube videos from home, and you could actually see musical productions on YouTube that you'd never have the chance to see IRL for whatever reasons.

2023-10-18 13:26:34

I need to get up and do the grocery order but I have this snoot leaning on me 🥺
https://assets.disabled.social/media_attachments/files/111/256/246/288/149/889/original/cda12e3186008ece.jpg

2023-10-13 14:51:02

Doctors who think POTS always involve deconditioning are so ridiculous to me. At the point when I became symptomatic enough to realise I needed to seek medical care, I had a baby and a pre-schooler. I'd never been less rested in my entire life.

2023-10-04 07:33:46

Bonus hoverfly with today's #BloomScrolling pigface flower 😍
https://assets.disabled.social/media_attachments/files/111/175/586/226/132/810/original/22da95c61bb1fab3.jpg

2023-09-30 08:45:29

Quiet reminder that literally nothing is "easy" for everyone, and seeing people glibly refer to something you can't do (or really struggle to do) as easy can feel pretty shitty.
Literally nothing, I mean that. Not brushing your teeth, not scrambling eggs, nothing.

2023-09-23 02:06:19

*Resets the Days Since Ableist Nonsense from a Self-Proclaimed 'leftie' sign*
*sigh*
Bigots aren't bigots because they're unhealthy, overweight, underweight, or 'genetically inferior'. JFC listen to yourself, what the actual hell. You sound like a Nazi.