In this new series I will be sharing stories from our beautifully resilient ME community. These chronic illness warriors are not only battling crippling symptoms everyday as they adjust to life with Myalgic Encephalomyelitis, but are also finding ways to continue dreaming, creating beauty and supporting each other, despite their debilitating illness. I hope their stories will help you better understand this life-altering condition, raise awareness and eliminate the stigma that still surrounds ME.
Emma's ME Story
I started becoming ill with multiple infections in 2014 and no one knew what was causing it. An ENT told me I’d have to just live with the symptoms. Then in 2015 I had a head injury and it all spiralled downwards from there.
Misinformation And Neglect
By 2017 I was needing a stick to walk and suffered terrifying symptoms. No doctors would help, a lot of them saying just exercise and sleep and it made me feel judged and disbelieved. I was also told by a “specialist” I need to find a job where I’m on my feet all day when I said I had to stop work!
What ME Feels Like
The symptoms I had / have are; dizziness, nausea, complete sensory overload, difficulty tolerating being in a room with more than one or two people & needing to lie down when socialising indoors, noise sensitivity, burning pain in my body, tingling, neurological symptoms like twitching and “buzzing”.
Imagine you’re sitting on top of a washing machine and you feel the vibrations, that’s what the buzzing is like but it comes with a lot of pain, the twitches like blood popping and boiling under the skin.
In 2018 I found talking on the phone hard and was bedridden for 6 months. I am currently still housebound mostly, but I am making very small progress and can now go downstairs most days and manage to get myself my own water / food on the good days.
Disbelief And Stigma Around ME
I’ve been disbelieved by friends, healthcare professionals & been treated with a lot of stigma.
Luckily I am working with some good doctors now, I meditate regularly & make sure I reduce all stress.
I am missing from family and friends, music, acting, my love of make up, my nature walks, traveling, working and my independence has been lost.
I have a long way to go but with patience and self care I will get there.
You can find Emma on Instagram at @TheChronicSurvivor
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