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 […]
Health
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 […]
When Too Much Need Makes Want
I’ve never understood a linear experience of life. Specifically, income. Mine has gone up and down my entire life and the thought of it increasing slowly over time is a fantasy from another era. In 2022 I had one of the highest paying jobs I’ve ever had and now in 2023 I’ve got one of […]
DIYing My Life
Recently, I reached out to a disability organisation who was offering a mentorship program. As you know, in 2023 I spent a horrible bunch of months job hunting. Don’t be disabled and job hunt, people will verbally abuse you for existing. Anyway. Clearly 99% of my career options no longer exist due to the fact […]
Disability Vengeance
Oh I loved this when I saw it recently: First, we had Disability Rights, then we had Disability Justice, and now I would like to unveil my own framework: Disability Vengeance. — Richard Amm ♿️🌍👨🦼 (@Richard_Amm) July 9, 2023 A twitter post by user Richard Amm that says “First we had Disability Rights, then […]
Respite and Recreation
I’ve had a rough couple of weeks. I know the reasons behind it and it’s mostly a confluence of some shitty timing on multiple fronts. Not that knowing “why” really helps me. Anyway. I came across a Facebook memory from this-ish time last year where I worked out I hadn’t had any leave in […]