This week I’ve been looking at how you make a complaint to your health care provider. Surprisingly many people don’t know they can actually make a complaint about the treatment they receive. Like many things with chronic illness this is yet another thing you don’t get told about. So let’s break it down! There is […]
At some point along your journey I hope that someone has told you that your illness is not your fault but how much do you actually feel that? Our brains are designed to analyse information and make meaning out of the chaos that is life. When something as big as chronic illness happens it’s very hard […]
So it’s been a hot minute since we last spoke and a lot has happened in that time. Don’t worry though this is a completely C word free newsletter! (A rarity in this day and age!!) Over on the ‘Gram I have been speaking about the ways in which brain fog affects me and the […]
AAAAAARGH inappropriate questions! Where do I even start? We get them day in and day out and the worst part is always that the askee never understands why it isn’t ok. Sometimes we are too tired to educate people, others we just don’t have the time but how do we get this information across so we […]
Oh medication, having been around free range humans (aka those who are not housebound by chronic illness) I’ve been reminded of how much they cling to the idea that medication can fix everything. That when you get sick the doctor’s hand you pills that magically make it all ok again. Any one who’s been chronically ill for […]
WHY IS ACCESSIBILITY ALWAYS LEFT TO THOSE THAT DON’T HAVE THE ENERGY TO DO IT??? If you haven’t been watching my stories you won’t yet of seen caption gate. While making my first IGTV video I came up against issues that those from the disabled community always face. Access it seems is something only we care about […]
I am breaking the cardinal rule of pain club and I am actually going to talk about pain. It was only the other day, when I was talking with a fellow spoonie friend that I realised to some extent we all actively avoid talking about our pain. I think in the beginning it’s about not creating […]
Isn’t that heart just the best image for when you keep putting others needs above your own? You just end up bleeding out. Now don’t get me wrong, I am so guilty of this too. I think as people who suffer from chronic illness we have this awful tendency to try and put others needs […]
Chronic pain (that is pain that last for six months or more) is largely misunderstood and worse still when it comes to women and pain. Which is astounding considering that 70% of chronic pain patients are women but 80% of pain studies are carried out on men or male mice. That’s just not ok! We are […]
I have a confession to make, I still worry about getting access needs wrong, so it’s no wonder non disabled people can often feel completely out of their depth with this too. Access is an incredibly personal thing and I am a true believer of the idea that you will never truly understand access issues […]
