Ive always just wanted to be me, not me + a chronic illness. So I was always quiet about my illness and diagnoses. They really only started to hit me most when I was 17 and was hard to hide as much then. At 19 I was diagnosed with a rare muscle disorder called Myasthenia … Continue reading Fundraising For Your Life
When you come out of a place of complete darkness back into the light, its like putting on a pair of glasses. You can see clearly again, perspective pushes through. I listen to music again and hear lyrics and musicality. I talk to people , communicate again on social media , I can answer the … Continue reading The Chronically Disconnected.
Arent you lucky!! This is one of my regular # to use on Instagram #butyoudontlooksick. I see it used a lot too. Its something as a chronic illness community you hear all the time. Some people take offense to it and I understand why. It can be said in a way of belittling of your … Continue reading But you don’t look sick
I always face each trip with so much anxiety. The whole week before I'm not myself as its constantly on my mind. Will I be well enough to travel on the day? Will I be ok after all those injections? What if I take a bad turn over there? All viable questions as they are … Continue reading London Update Pt 2
Its hard to process and comprehend hours of consultations with some of the leading Professors and Consultants in the world in my condition. They can be refreshing to listen to their vast knowledge, their empathy for the unlivable situation you are in and most of us all when they give you hope they are going … Continue reading London Update (Why Im choosing to blog) Pt1
I have a very abnormal life living with Ehlers Danlos Syndrome, Chiari , aai instability, pots and gastropaerisis. I try to show the most positive side of my life through my @eds_mybeautifulstripe Instagram page. Check it out 😊 This is a place where I'll talk all things living with chronic illness which is just living … Continue reading Hello world!