Lend Me Your Spoons

Via one of my favourite creators Colourblind_Zebra

You are not lazy for resting when you’re in a flare, when you’re fatigued, when you’re in pain or ever! 💜

Resting is productive, whether you’re resting physically, mentally or both. Everyone needs to rest, but it is even more important for those of us who are disabled, chronically ill or have chronic pain. Allow yourself to take this time to recuperate 🔋

What is your favourite way to switch off and rest? For me it’s crafting (crochet, knitting, sewing, etc), watching films or series and playing video games!

[ID: An illustration of a black woman with lilac hair that has daisies in it. She is laying on a rainbow picnic blanket on green grass and is wearing a yellow T-shirt with a rainbow necklace and eyeshadow. There are bees in the background. Text on the left side of the image reads “you are not lazy for resting when you’re in a flare”.]

🌻 We are thrilled to welcome Sydney Trains as a member of Hidden Disabilities Sunflower Scheme. 🌻

Travelling with a hidden disability can be challenging. Sydney Trains staff are trained to recognise the sunflower and offer extra support where it may be needed.

You can pick up a lanyard or wrist band from a number of stations across the Sydney Trains network or from their website - https://lnkd.in/gfbjV8Wp

Where being vocal is a privilege and luxury.

Please read this article.

'...this burden shouldn't fall on the disabled community.'

So please, if you are meeting up with anyone, ESPECIALLY anyone in an at-risk category, please declare your current risk status prior to meeting. We need to know if you are masking up (and how often and what circumstances), if you have been in a higher risk environment or situation recently, and if you are vaccinated, etc. All of these factors help us navigate the new space of socialising in a (not-actually-)post pandemic world. Please help it become the norm to have this conversation prior to social situations, because not everyone has the luxary of being vocal about making spaces safe.

When Ajar realised her disability, she felt relieved — but also like a fraud As a brown, Muslim disabled woman, I don't have the luxury of cutting off friends who offend me. If I were to cancel every person who made an ableist, sexist, Islamophobic, or racist comment, I would truly be isolated.

I just broke up with my doctor and now I'm crying. I have doctor trauma and it's so hard to find doctors I feel safe with. Sadly he is over in B (other side of the city) and no longer bulk billing - I can't afford that now I live alone. I have a doctor phobia and this is only one of three doctors I've ever felt safe with. He was lovely, understanding, and even at the last was helpful around my symptoms. I really hope I can find someone local who bulk bills who is even half a good as he has been.

😑

Literally how it is/feels/how yous sound 💩

via Instagram.com/creamcrackeredblog

Event organisers, venues, businesses - please take note of this.

Provide accessibility up front. Provide accessibility information. Don't segregate disabled people further by having a different booking process or entrance. We shouldn't need to disclose our disability to ask for accessibility.

The admin of asking for access (and the denial of providing access) is exhausting

Thank you for this, Elisha ()

Image: a tweet from Elisha Matthews. It reads: "Unpopular opinion.
If your event requires me to use a different method of booking to everyone else because you'll need to know in advance I'll be using a wheelchair, your event is not accessible.
"

❤️

The road to diagnosis can be long, with lots of bumps along the way. Please be gentle with yourself 💜

From discovering that the symptoms we’re experiencing aren’t ‘normal’, to going to our first doctors appointment and thinking everything will get sorted out, to realising that it just isn’t that easy or that simple…

There are so many bumps that appear on this road. Nothing ever happens in the way we’d hoped or imagined, yet it’s still weirdly, unsettlingly unsurprising

If you’re new to this, please go easy on yourself. It’s hard for those of us who have been going through this for years and we know how it feels to be thrown into this world of trying to find answers

What tips would you give to your younger self about this?

[ID: An illustration of a twisting road with cracks in it. A rainbow glow comes from underneath it. There’s grass on either side with flowers and butterflies. Text in the top left corner reads “ The road to diagnosis can be long, with lots of bumps along the way. Please be gentle with yourself.”]

Everyone not disabled needs to read this.

It seems ridiculous that people say they don’t see my disability because HELLO hot wheelz but people do indeed say this shiiiiit to me.

I don’t see your wheelchair just a beeeeyoootoful lady (what do you think I’m levitating Sharon?) Is meant as a compliment but it’s not a compliment it’s someone projecting their ableism at me.

If someone doesn’t think of me as Disabled then they’re also not thinking about my access needs.

Remember when I went to vote and the only way I could get into the building was with Jases help. When I raised this issue I was told “Even if your partner wasn’t with you we would have all helped carry you in!” 👀 Come on now.

If wheelchair users had been seen/thought about in that instance then step free access would have been in place.

When we ignore disability because we think it’s an awkward unfortunate thing we’re also ignoring all the societal barriers that exist for disabled folks that stop them accessing the world and getting the support they need like everyone else can.

We can’t achieve equality and have our basic human rights and needs met if people can’t even bare to acknowledge our disabilities in the first place.

ID: A pink background with white daisies in the corner and a cut out picture of Nina a white wheelchair user on it. Nina is wearing a cream cardigan with cherry’s all over it, a blue crop top and blue jeans. Her chin length brown hair is down and she has a thick fringe. Text on the image reads - If you don’t see my disability you don’t see my access needs.

I needed this

Credit: Andrew Gurza

U-huh

Anyone with ME/CFS or familiar with both it and long covid will NOT be surprised at any similarity between the two. But it is awesome that research like this into long covid may open up research (and funding!) avenues into ME/CFS! I don't expect a cure, but I would one day like to know more about the science of why I have been so sick for most of my life (and increasingly so since 2014 during the esculation of my condition).

National Centre for Neuroimmunology and Emerging Diseases - NCNED
Emerge Australia Inc
https://www.abc.net.au/news/2022-08-11/long-covid-and-chronic-fatigue-syndrome-pathology-overlap/101318522

Researchers identify link in pathology between long COVID and chronic fatigue syndrome Researchers knew there were similarities in the symptoms. Now they've found an overlap in the pathology of the two illnesses.

Today, on Severe ME Day, we would like to acknowledge and reflect on the devastating toll that severe ME/CFS has taken on individuals living with this disease. Over 25% of over 250,000 ME/CFS cases in Australia can be classified as severe, often causing these people to feel invisible as they are unable to access required medical care and support services.

If you have a loved one with severe ME/CFS, let them know you are thinking of them today.

If you live with Severe ME/CFS, we also encourage you to share the little or big things that help you out during the day by commenting below, to make a difference for someone else.

To learn more about ME/CFS and the effects it can have, visit us at https://www.emerge.org.au/