15 facts about me
- I live in the UK
- My middle name is Sara
- My favourite flowers are peonies
- I love Moomins! - my favourite character is Little My
- My favourite colours are turquoise and pink
- I love rainbows
- I love anything sparkly and glittery
- I'm a Quaker
- I love writing letters to my pen pals
- I enjoy arts and crafts
- I'd love to learn to braid my own hair
- I have more nail polishes than I dare count
- I'm learning British Sign Language (BSL)
- I love listening to audiobooks and I'm trying to get back into reading books and I've recently gotten into reading poetry too
- I'd love to learn how to make my own clothes
My medical diagnosis'
I'm trying to navigate life with my chronic illnesses/disabilities. My 'main' illnesses are:
- Severe M.E (Myalgic Encephalomyelitis - this is a neuro-immune disorder though it affects every part of my body. 1 in 4 people with M.E are severely affected. M.E leaves me housebound with most of my time spent in bed. Some of my symptoms include chronic fatigue and pain, a lowered immune system, cognitive dysfunction, post-exertion malaise (often just minor things to most people are big activities for me to do), hypersensitivity especially to light, sound and touch, dysautonomia (problems with the bodies automatic functions), orthostatic intolerance meaning I struggle to be sat upright and many other symptoms.
- hypermobile Ehlers-Danlos Syndrome - a hereditary connective tissue disorder that affects my joints and various organs. EDS is a rare illness so EDS patients are known as 'medical zebras'. Having hEDS means that my joints are prone to subluxing and dislocating; its quite a painful condition. It also affects my organs especially for me my heart, he whole of my digestive system and my bladder. The latter has meant that I now have a catheter due to bladder failure as a result of my EDS.
- Functional Neurological Disorder - this is a problem with the brain's autonomic messaging system which results in me expereincing many different difficulties. I have different types of non-epileptic seizures, poor mobility, certain organs not working as they should, dysautonomia, chronic pain, muscle weakness, problems with my nerves and central nervous system and more - (often symptoms overlap between my different diagnosed conditions).
- Chronic Migraines with aura - migraines are a neurological disorder. They are classed as chronic when a person experience 15 or more migraines a month. Along with my migraines I experience a visual aura which can feel like a torch being shone or other visual hallucinations. Thankfully my migraines are now better with both preventative medication and also finding the right medication for when I do get a migraine attack.
- I also have other secondary illnesses and complications such as Postural Orthostatic Tachycardia Syndrome and certain organs not working as they should. PoTS means that my heart rate gets too high and my blood pressure too low resulting in me passing out so often sitting down is the better option. Also in the mornings I have to slowly raise the head of my bed so I can adjust to being sat upright. My PoTS also causes other things such as dizziness, heart palpitations, nausea and headaches among other things.
