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 […]
Health
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 […]
Another spoon use
While writing the actions speak louder than words post I had a thought. When your lack of spoons causes you to lose parts of your identity, then you end up needing to spend spoons to work out what your identity is now… Losing so much energy (and therefore functional levels) in the past few […]
Actions Speak Louder Than Words… Or do they?
What happens when you lose the ability to take action? Are you denigrating words? It’s much like eons ago when I saw supposedly wonderful disability activists shitting on people who couldn’t go to in person protests. Apparently using “only” a keyboard is “slacktivism”. (This was a long time ago when I wrongly assumed all […]
Respect does not require understanding
This has become a theme for me. For me, it is in the context of my needs. My chronic health conditions disable me and I have needs due to that. Fatigue is misunderstood not only by society but by lots of ignorant people in medical professions who won’t (I refuse to believe can’t is […]
Oh, that’s terrible!
I’m tired of people centering their reactions to my “stuff” when I’m the one who has to live through the shitty parts & they don’t. This is what I got when I was job hunting in 2023. I had people telling me how awful it was that I was housebound. It wasn’t about me, […]
The problem with long covid and ME/CFS research
I started sharing some ad-hoc thoughts online after filling in a Long Covid research survey. Then I thought I might collect all my random social media thoughts on this topic into a blog post. The trigger for thinking about this was a LC survey asking if I will participate in blood samples… I ticked […]
Luxury is relative
Luxury is relative. Fatigue is misunderstood. These two topics have been colliding for me throughout my life, but especially in 2023. I think to understand luxury you need to respect fatigue. Fatigue is not curable by a sleep. Conditions like mine are defined by a lack of refreshing sleep. No sleep problems, but […]