Saturday, 21 October 2017
I am aware I haven’t been blogging as much recently, life has been a challenge, but I feel quite passionately that more awareness, understanding and insight needs to be out there for those with complex and chronic conditions. I’m aiming to blog mostly about my conditions and the ups and downs, the things that help and the things that don’t, the things others don’t realise, and tackle some stigma that is there around having these conditions. I also want to put out there the kind of information, resources and helpful tips I wish someone had told me when things first deteriorated!
So a brief update, which I will do further posts about at a later date; I have recently had my official diagnoses of EDS-3, POTS and CCI (don’t worry I will explain those shortly!) by Professor Grahame; I have also been journeying through the process of finding suitable accommodation; I passed my first year of OU and have started my second; and many other things I’m sure will be spoken about in due course!
A brief guide to abbreviations:
EDS = Ehlers Danlos Syndrome
POTS/PoTS = Postural Orthostatic Tachycardia Syndrome/Postural Tachycardia Syndrome
CCI = Cranio-cervical Instability.
Also, if there are any specific topics you want covered just let me know and I’ll see what I can do!
Love to you all!