In 2015 I was diagnosed with osteoporosis, which is a common side effect of living with Ehlers-Danlos Syndrome. EDS causes joint pain, which makes it difficult to exercise, and inactivity over many years can lead to weak bones. I was diagnosed after a bone scan, which is a brief non-invasive process that measures a person’s […]
Five years ago I started writing this blog. My first post ‘Hello World’ talked optimistically about raising awareness of EDS, and sharing my story to help others with the condition. I committed to writing the blog for a year and then to decide if I was achieving anything. If not, I joked I would turn […]
Hello! Sorry (again) for not posting anything for so long. I have limited free time and energy each day, and currently I’m busy working on the 12-24 campaign. Hopefully you’ve all heard about the campaign by now, if not then I haven’t been doing my job very well! The 12-24 campaign is raising money to research […]
Allergy testing has been on my ‘to-do’ list for about 20 years. I’ve always suspected that I’m allergic to pollen and maybe milk too. When I was able to eat I used to avoid dairy products as they made me feel ill, and in my youth I was regularly prescribed an inhaler for hay fever. […]
As I’ve mentioned many times on this site, I can’t eat normal food so instead liquid food is pumped into my body through tubes. Unfortunately those tubes have a limited lifespan and one of mine recently failed. A Hickman line is a long piece of silicone tubing which is inserted through the skin on your […]