Chronic illness undoubtedly makes life unpredictable, unfortunately in that it also makes me pretty unpredictable and with that, unreliable. Not by choice but by situational factors out of my control. Reliability is one of the main things people look for when hiring someone for work. And understandably so, but this becomes a barrier for a …
Category: Chronic Illness
Adjusting to life without sound
At 17 I went from hearing to deaf within a couple of months, we still don’t why there was such an extreme decline so quickly or if with my form of nerve damage if cochlear implants will be an option in the future. I never would have imagined at the beginning of 2020 that by …
The true meaning of indomitable spirit
When I was younger I took teakwood lessons. My teacher, another big role model of mine growing up. Taught us about the five tenets of Taekwondo. Courage, integrity, perseverance, self control and my personal favourite indomitable spirit. “Indomitable spirit is that part of a person which makes them unique, that part of a person which …
Rare Disease Day 2021
Rare Disease Day 2021 Today I’m joining with millions of people around the world in raising awareness for Rare Disease Day and #showyourrare. Last year I was diagnosed with Hypermobile Ehlers Danlos Syndrome also known as HEDS, a genetic, lifelong degenerative illness. That affects the collagen all throughout my body, causing issues with every system. …
Draling With Medical Resentment
Its hard not to feel angry when symptoms are ignored by medical professionals or recomended treatments create new problems and or take away more quality of life. If you don’t follow their treatment your seen as uncompliant. You need psychiatry to get over your “fear” of said treatment. But no one says anything when it …
A Letter To My Younger Self | EDS Awareness Month
To my younger self, I just want to start off saying I’m sorry, I’m sorry for everything that’s happening to you, I’m sorry that for a long time no one but your mum will believe you, when you say something is wrong. And I’m sorry for hating you for so long, It was not you …
Why The Treatment Of Chronically Ill & Rare Disease Patients NEEDS To Change
Disclaimer – this post is not intended to bash doctors or the medical system, merely to bring to light the treatment millions around the world face on a daily basis. In honour of Rare Disease Day I wanted to cover a topic most aren’t often aware is an issue. That being the treatment of chronically …
Getting A Diagnosis After 9 Years ~ EDS
I still can’t believe I finally get to share this, I had honestly given up all hope that I would ever get a diagnosis. But on the 21st of January 2020 at 11:00am I received my diagnosis! I have Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder that effects every system of my body …
Honouring The Season Of Life Your In
I was recently listening to The Rise & Conquer Podcast Ep:37 Honour The Season Your In by Georgie Stevenson. In the episode Georgie said something that really hit home for me. ”Honour the season your in, stop looking around and feeling like your missing out or your not doing what you should be doing. Really …
My Biggest Fear Is My Broken Body
The irony of this post is unreal, I wrote it a few days before halloween with the purpose of going up on Halloween night with a makeup look that to me showed how I’ve been feeling on the inside – broken. But that never happened as at 2am on halloween morning I ended up in …