I didn't come up with the title for this one, 'Making Our Invisible Visible' is the tag line for the charity EDSUK. I think it's a very important statement and something that needs drawing attention to; not all disabilities are visible. I am lucky in the fact that, so far, my EDS hasn't affected me … Continue reading 12th/13th/14th May; Making Our Invisible Visible: Why Awareness is SO Important.
I'm a few days behind with this blog (which is why this post is for 4 days) so I thought I'd explain why; I've had a serious lack of spoons. Let me elaborate... Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) is one of the more disabling aspects of EDS and, unfortunately, it's … Continue reading 8th/9th/10th/11th May, Spoon Theory; Explaining Chronic Fatigue
*Please read Part 1 first!* So, where my last post left off I was in sixth form and hoping to get a place to study at a conservatoire but I was being plagued with migraines. I decided quite early on in year 13 that I would take a year out between A Levels and Higher … Continue reading 6th May Being a Stripey Musician, Part 2: joint problems
Although musical performance has always been a big part of my life, my relationship with it has been far from straight-forward. The first instrument I started learning to play was the Piano at around the age of 4. My family moved from Aberdeenshire to Derbyshire on 4th July 1999 and my Dad was in the … Continue reading 5th May, Being a Stripey Musician, Part 1: Migraines
Why is this blog called The Stripey Musician? Because I'm a musician (obviously!) and a Zebra. No, I don't literally think I'm a Zebra, don't worry! Let me explain... At medical school, students are taught the saying: 'If you hear hooves, don't expect a zebra' Literally, this saying means that it is much more likely … Continue reading 4th May, Zebra and Proud
*Please Read Part 1 First* The first time I had a migraine was during the Easter holidays in 2010. It was unlike anything I'd ever experienced, and not in a good way. I vaguely remember being curled up in a ball in the dark on my bedroom floor and Mum telling me to go to … Continue reading 3rd May, The long road to diagnosis, Part 2
On 4th April 2015, my mum and I travelled down to London for an appointment at the Hypermobility Clinic at UCLH. The appointment was with Dr Nicola Ambrose and, after about 10 minutes of talking to us and running through my Beighton score, she gave me the diagnosis I had been waiting for for nearly a … Continue reading 2nd May, The Long Road to Diagnosis, part 1
As May is Ehlers-Danlos Syndrome (EDS) awareness month I have decided to challenge myself and write a post every day about my life with EDS... So here goes! My name is Rachael, I'm a 23 year old postgraduate student at the University of Leeds and I was diagnosed with Hypermobility EDS (HEDS) on the 4th … Continue reading 1st May, My EDS