Housebound musician’s fight to get her life back
SHE was a brilliant violinist who danced for 16 hours a week, worked as a carer and had big dreams of helping others through art.
Now after being struck down by a life-changing illness, a simple turn could dislocate Charlotte Hiller’s head from her body.
“My head is trying to fall off and my brain trying to fall out,” said the positive 31-year-old, restricted by the permanent brace around her neck.
Laughter is her way of coping with the crippling reality that she is largely housebound – and has been for the past five years.
The Birmingham City University student, who used to look after others, is “completely dependent” on carers herself every morning.
But despite everything, positive Charlotte refuses to give in, saying: “I’m not done yet.”
Over the years, she has been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Chiarimal formation and Atlantoaxial instability.
The pain she feels on a daily basis is “like someone’s smashing an axe into the back her head”, she says.
With the hope of getting her life back, Ms Hiller has launched a GoFundMe page to raise almost £30,000 for life-changing neurosurgery.
Charlotte says she isn’t able to get the surgery she desperately wants on the NHS and has now found someone to do it privately.
But she says it will cost £26,725 and £3,000 for post-op rehabilitation.
Ms Hiller first had symptoms of chronic back pain and wrist ache when she was just 12 years old, but dismissed them.
She said: “Because I thought, ‘well to musicians’.”
But then the pain worsened when she was a student at music college and she was diagnosed with Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.
She managed the conditions as best she could, trying to push through and still work.
However, in 2015, as she graduated from Birmingham Conservatoire with a music degree, her health deteriorated and she was no longer able to work as a music teacher and carer.
Charlotte, who also suffers severe headaches, migraines and neck pain, says her symptoms make it nearimpossible for her to complete her current part-time psychology course at Birmingham City University.
She claims her health deteriorated after she was prescribed a “very high dose of steroids” to avoid losing the sight in her eye while suffering from an inflammation of the optic nerve.
“That screwed up the rest of my body. They had a domino effect and
I was a musician it’s what happens within weeks I was housebound, in unbearable pain and my body changed out of all recognition,” Charlotte said.
“I’ve been stuck in my house for the last five years, staring at the same four walls – and in pain. It is horrible. I literally feel I want to remove my head from my body, the pain feels like someone’s smashing an axe into the back of my head 24/7.
“Nowadays I get out of the house to go to the doctors, that’s pretty much it. Just the doctors.”
The severe headaches come within just ten minutes of standing, meaning she spends all day in her house and most of it lying down.
“I have balance problems too, if I shut my eyes I fall over, which my flatmate finds hilarious,” she said.
“It’s not that funny but you have to laugh. I laugh quite a lot at myself.
“My memory is shockingly bad these days, so I forget conversations I’ve had.
“I lose the feeling in my legs and hands for weeks at a time, I have little in the way of sensation on my skin. I’ve been told if I keep my head turned, I’d end up with a stroke, so not ideal.”
She also has other neurological problems including difficulty swallowing and double vision.
Charlotte said: “My main aim once I get back is to go into art therapy because I’ve had experiences of mental health problems and I really want to help others who are going through a similar thing. That’s my drive. The benefits of being able to build my body back up and get out of my own bubble, and be able to do all the things I’m desperate to do.
“I would be able to be up and about, I would be able to study, potentially work again in the future.”
The pain feels like someone’s smashing an axe into the back of my head 24/7
Charlotte Hiller