“Yoga might cure you?” “You should try a vegan diet” “Have you tried meditating when you have a panic attack?” When you are chronically ill or disabled, people often try and give you helpful advice or tips on how to get better or how to deal with certain symptoms. A lot of this advice is… More Unsolicited advice can be hurtful
TW: suicide, death, euthanasia Recently I found out that in the Netherlands (and actually some other countries) you can get euthanasia if you have ME. My illness. Since finding this out it has been something I have thought about a lot. There is something kind of strange about finding out that living with my illness… More Euthanasia, suicide and ME/CFS
Learning a new language is quite a daunting prospect for anybody. Add in a chronic illness, with fun symptoms like brain fog, energy deficiency problems and memory recall issues, and it can seem very overwhelming. I am currently spending a lot of my time learning Dutch, in order to pass exams at the end of… More Language learning with a chronic illness
A couple of months ago I went to a demonstration for the first time since the pandemic started. This demo (by transzorgnu) was organised as the start of a movement to fight against the state of transgender healthcare in the Netherlands. Throughout the many speeches and social media content surrounding the demonstration, I was constantly struck… More Healthcare, ableism and transphobia
Video version at the bottom of the page – coming soon! Last night I was too sick to get out of bed. I had managed to put some pasta on to boil but had then gone straight back to bed. My housemate, rescuing the pasta from being overcooked, came into my room and offered to… More Asking for help is hard: chronic illness edition
A video version of this blog can be found at the bottom of the post for those who find video easier! I love the Olympics and I love the Paralympics. As an ex-athlete I love watching people compete at the highest possible level and achieve their dreams and goals. Every athlete puts so much hard… More The Paralympics with a chronic illness
I started using a wheelchair around about a year ago. Since then, I haven’t really been able to use it all that much, other than for trips to the supermarket and walks in the nearby area. But recently, thanks to living in the EU and being fully vaccinated, I was able to take myself and… More My first time travelling with a wheelchair
Sometimes non-disabled people will ask me, ‘what do you do all day?’ If I don’t work, surely I have to do something. And I always find this question difficult to answer because saying “not much” is not true, even though, often, I haven’t ‘achieved’ anything specific. Some days, all I do is lie in bed… More Crip Time, my timey-wimey disabled existence
Chronic Epstein Barr Virus, Systemic Exertion Intolerance Disease, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis. What do all of these have in common? In fact, they are all names for the same illness. But why does one illness have so many different names? And why does the name of the illness matter? Well, like almost every other… More ME/CFS; a disease with many names
A couple of nights ago, just before I was about to go to bed, I started getting a creeping uneasy feeling, that turned into a fully-fledged paranoia that I was going to get thrombosis, have a blood clot, and then a stroke. It was something that I then spent the next couple of hours obssessing… More Health anxiety – I’m terrified of getting sick