A quick post on what its like living with an un-cooperative body and the challenges of invisible disabilities. Set during one day at university.
Symptom management is a really important part of living well with a chronic health condition. For symptoms like fatigue and pain, Pacing is an essential skill to learn 1 . There is no easy fix for life with long-term health conditions but there are a lot of little fixes that can help. To make the most…Continue reading Pacing – when is the Boom worth the Bust?
It was all fun and games on the ward last night, we had a power cut just before 10pm…the emergency lighting came on in the ward but not in the bathrooms so I got ready for bed in the dark using my phone as a torch! The emergency lighting was stuck on until the power…Continue reading The Rehab Saga: Jam Packed & Working hard!
This is a topic I’ve discussed a lot over the years since my health started to decline due to Ehlers Danlos. There is a lot of stigma associated with mobility aids, I’m often questioned why I use a wheelchair when I can walk or why I use crutches when I have a wheelchair. The reasons…Continue reading When is the right time to use mobility aids?
I Posted this photo as part of EDS Awareness Month to highlight just some of the effects that Hypermobile-EDS has had on me and many others.. well the response was phenomenal! By the time I went to bed yesterday an amazing 41,312 people had seen that photo! There is no way this would have happened without…Continue reading EDS Awareness Month Continued!
EDS is a part of me, A part of my life and despite all of the problems, the pain, the endless fatigue, the tears, the sleepless nights, and the fact that as soon as I learn to manage one thing another one pops up! I wouldn’t change it for the world. I have met amazing…Continue reading May is EDS Awareness month! I have Hypermobile Ehlers Danlos Syndrome