Welcome to my little part of the inter-webs!
So, about me: I’m a 20 year old with a passion for animals, fairytales, books, lettering, music, and cruelty-free beauty. And unicorns and mermaids. I have various different Chronic illnesses, such as Hypermobility Ehlers-Danlos Syndrome, Chronic Fatigue Syndome, Snapping Hip, PoTS – because of these, I walk with walking sticks and also use a wheelchair. My spoonie status (if you don’t know what I’m blabbering about, you can read ‘The Spoon Theory’ here) is a massive part of my life, but I believe that with positivity and the right support, we can achieve anything that we set our minds to – even if we have to take a few naps along the way!
I have a condition called Ehlers-Danlos Syndrome which means that the connective tissue in my body is faulty – this tissue makes up around 95% of the body so physically I can’t escape it. Along with this, I have Postural Orthostatic Tachycardia Syndrome (PoTS) as well as Snapping Hip Syndrome, Chronic Fatigue and a bunch of other “syndromes.” I also suffer from depression and anxiety, secondary to my physical illnesses.
I’m a big believer in staying positive throughout, well, everything! I’d like to think I have a fair bit of life experience now and I know what my body can and can’t do and although I respect my boundaries, I don’t let them control my life.
One of the biggest downfalls of EDS and many other invisible illnesses is the lack of awareness amongst medical professionals. I was told for years that there was nothing wrong with me and that I was just more aware of pain than any “normal” person.
A couple of amazing & useful links for those who either have a Chronic illness or would like to read more about EDS & The Spoon Theory:
- The Spoon Theory – this is a genius tool that describes my day-to-day life perfectly.
- Ehlers Danlos UK – one of the amazing charities that has helped me profoundly.
- Hypermobility Syndrome Association – the charity that I approached when I was first diagnosed – it’s made up of the loveliest and most compassionate people and they’ve helped me so, so much.
- The Pillow Fort – If you’re a fellow young, positive spoonie then you must check this out – it’s probably my favourite idea ever.