I’m having a very frustrating day today, and I think what makes it frustrating is the layers. It’s the layers of expecting to have to deal with shitty humans on top of your shitty body. Why? Can we not catch a break? Everyone wants to celebrate the resilience of people with a disability, but no […]
Health
What if I don’t want to work anymore?
This is a tweet I shared last year. If you were around me in 2023 you know I’ve been through mega fucking piles of fucking ableist wank bullshit. (And yes, that’s the nicest way I can put it.) I’m starting a blog post on an “unacceptable” topic: What if I don’t want to work […]
Not disabled enough
I had a flash back to reading an enterprise bargaining agreement. I know, I have had a wild life. Part of the agreement included a way to kick people out of the university based on health. It did mention that if you’re going through this process, you should engage with your super fund to see if […]
Asking for permission sucks
Was chatting to a friend about library books & she suggested I try neighbour shire card (or something to that effect) but all info says you need to show ID in person. Not helpful for a housebound person. Am so sick of being left out. Now I’m left out of ebooks for fucks sake. […]
No fun at work
Recently I saw someone reshare the Vice article from a couple of years back where someone won a lawsuit saying that their employer couldn’t force them to do fun things. And I think a lot of people were joking about it. I mean, a lot of people don’t like their team building activities and […]
Cut Off
I feel cut off from everything. And you may say that makes sense… I am cut off. I am mostly housebound. I can get out enough to pick up medication and food, but not for anything else. Everything comes down to necessities. But while that is obviously fucking boring and often irritating, it’s not […]
Self Care only for the abled?
Consider people who go for a run during the work day vs people who need a nap during the work day. One is seen as acceptable, and the other is seen as lazy. Both are things that are broadly actions a body needs to function. (As someone with ME/CFS, exercise is dangerous. I want to […]
No Queues
I’ve seen a few people share about this on social media, which means I now feel that solidarity exists. (Also, don’t assume no one sees your posts. Likes and comments and vanity metrics don’t measure the impact you have.) Queues are one of my biggest flare triggers. It’s also not socially acceptable […]
The internet is my only home now
The thing about becoming mostly housebound and struggling with synchronous communication is that it basically leaves social media as the place for my communication. I curate my social media HARD. I block, mute, unfollow very easily. It’s bullshit that you have to allow assholes in to avoid it being an echo chamber. And as […]
Clarity
I saw someone once saying that a rare benefit of ME/CFS is that they had to get really clear about what they want. That hasn’t happened for me. I still want a shitload of stuff. I wonder if this happens to everyone? Does everyone with ME/CFS get really clear on what they want? Does […]