I don’t think I ever really understood how detrimental loneliness and isolation can be, until I got ME/CFS and POTs. Being chronically ill can be an incredibly isolating and lonely experience, and it can feel as if there is nothing you can do about it; as if for as long as you are sick, you… More Chronically ill and isolated
Care giving relationships (particularly unpaid) when caring for disabled people can be difficult to manage for both people in the relationship. For the disabled care receiver it requires a trust and a vulnerability to allow yourself to receive care, and for the care giver it can feel as if you have too much responsibility. Having… More Care giving relationships can be tricky
After years of knowing that a wheelchair would be helpful but being too scared to use one, exactly one year ago I bought my first manual wheelchair. So, on my wheelchair anniversary this year, I want to challenge one of the most common things that people are told when they start thinking about mobility aids,… More Using a mobility aid is not giving up
“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