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 […]
Health
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 […]
Advocacy and Change
Note: all definitions below are based on my perception. I’ve always wanted systemic change. If a company does something wrong and then apologises to me, I’m not really interested in the apology. What I want to happen is for them to change their systems so that it doesn’t happen to anyone else. Only […]
Cognitive Fatigue and Communication Preferences
Take a look at the second slide on this Instagram post. Embedded and screenshot versions are below, with the text transcribed below both image options: View this post on Instagram A post shared by Anja Vesterhus Knustad ♥ Chronic illness • ME/CFS • Spoonie (@this.is.the.illness.m.e) The post says “Being social; […]
Normalise Living Aids
A chronic pain/migraine account I follow on Instagram did an update post about their peer support groups. And something caught my eye… they talked about coming as you are. With your heat pack. In bed. And so on. Which reminded me of the job I had last year/the job that went under in Feb […]
Empower Does Not Equal Outsource
I jumped in a twitter conversation and found a really good distinction that seems to come up in disability/chronic/however the fuck you identify life. The concept isn’t new but the wording made it much clearer for me. People always want to empower you to do more, but don’t want to remove barriers. You should […]