Ellie’s Top Tips
Learn a simplified way to explain what EDS means for you; for people who have never heard of EDS it can be quite complex to understand, so I put a few sentences together explaining that for me it means my joints are loose, it causes chronic pain and I struggle to walk sometimes. Now I just use the same script for new people I meet and want to explain my condition to.
Customise your mobility aids; I put stickers all over my first pair of crutches and it made me feel so much more confident about using them!
Keep trying new things; I used to assume that I would find things too physically difficult but it’s only through giving activities a go that I learned I could do more than I thought and adaptations could be made for me.
Pacing doesn’t have to be boring; As a very active person the idea of pacing was hard for me to understand, until I decided to see it as an opportunity to get comfy and watch my favourite shows or build lego whilst sat on the sofa!
Give yourself time; allowing yourself the time to understand your body and what helps or hinders you is my biggest tip. Because our bodies change from day to day, learning how to respond to pain, extra fatigue or any other symptom is invaluable.