This week’s Campus Cutie comes in the form of Ruby Jones… not only is Ruby a hard-working student, an avid blogger, and an incredibly talented Make Up Artist, she also suffers an incredibly rare disease, Ehlers Danlos Syndrome.
Ehlers Danlos Syndrome is a connective tissue disorder, which means that the ligaments, joints and soft-tissues in Ruby’s body are too weak. There are many symptoms of this syndrome, but for Ruby, the main symptom is chronic pain. This affects Ruby every single day of her life, and some days worse that others.
In Ruby’s most recent blog post, she shares her journey of starting university with a chronic illness. She writes:
“After starting my first year at uni last September, I pretty much forgot all about pacing and pushed myself waaaaay too hard. I went out too much, drank too much and ate crap. All of this eventually put me in hospital for a week with uncontrollable levels of pain that were barely managed by regular doses of morphine”
Ruby was eventually sent home from hospital, but matters took a turn for the worse:
“Just a few days before my 21st birthday, I began leaking clear fluid from my nose and ears, and the headache became a pressure headache that prohibited me from lifting my head even slightly. I was taken back to hospital and was kept there for a week. It was concluded that the Lumbar Puncture had caused a Cerebrospinal Fluid Leak – this is something that is more common in patients with EDS, and this had made the headache worsen so dramatically. “
Living with this incredibly painful illness has had some negative effects on Ruby’s “student experience”- recently, she has decided to stop drinking altogether, as the alcohol combined with oxynorm, tramadol and diazepam gives her week long hangovers (!!), and isn’t able to go on as many nights out as she used to, as it leaves her incredibly fatigued.
However, this does not stop Ruby from living life to the full. Being a second year English Literature student, the workload is pretty heavy. But when Ruby’s not reading she’s pretty awesome with a make-up brush! With Halloween having recently passed, Ruby has taken to instagram (@rubyj0nes) to show off her incredible work.Â
She also nails Autumnal make up to a T.
On top of all this, Ruby also writes a blog documenting Beauty, Disability, and Lifestyle- which inspires many each day, whether disabled or not. Notable blog posts include, “The Reality of Chronic Illness”, “The Repercussions of Chronic Pain”, and “What I’m Doing For Halloween!” We at HCX endeavor to read Ruby’s blogs the minute they are uploaded. They are carefully written to be honest yet laidback, informative yet casual… and we love them.
Ruby has tackled her illness head-on, and refuses to let it dampen her quality of life. She realises that she has had to make some sacrifices, but now enjoys looking at life from a different perspective.
“Now I know that it is okay to do things differently. Adapting situations is what I need to do to live my life.”
Ruby’s blog:Â http://www.rubyj0nes.com/?m=1
Ruby’s instagram:Â https://www.instagram.com/rubyj0nes/
Watch Ruby Speak About Ehlers Danlos Syndrome:Â https://www.youtube.com/watch?v=sSnM7J2myzU&feature=youtu.be
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