EVERY DAY, for hours on end, Amelia Hill sits inside her plain 4m x 4m room, its large galvanised-iron door closed against the outside world, and quietly plans her escape.

She has no television, no radio, no computer, no books or magazines. She sleeps on a metal cot. Her only interaction with visitors — the few she gets — is through the single glass sliding door that last slid open many years ago, and which has long since been permanently shut.

But for the large windows overlooking the lush Adelaide Hills cottage garden outside, her room would resemble a prison cell. But she is not a prisoner, not in the conventional sense anyway.

For the past six years, Amelia Hill has been held captive in her own home, and her jailer is one of the world’s strangest, least understood medical conditions.

Amelia Hill is allergic to modern life.

Look around you. Everything you see — your clothing, the chair you’re sitting on, even this magazine — are, in Amelia’s world, sources of unimaginable pain.

Yet this isn’t the tragic story of someone beaten by a disease the doctors can’t figure out. It’s about one woman’s inner strength and persistence in the face of overwhelming adversity. And how her determinedly positive outlook has helped get her to a place where she might, just might, be able to see a glimmer of light at the end of a very dark tunnel.

Amelia had always been a bright, happy child. Intelligent and pretty, with delicate features and long brunette hair. An Annesley College girl, she’d had plenty of friends, and dreamed of a career in fashion. Then when she was 14 her family moved house and her life began to turn upside down.

“That year we moved in there I was sick all the time, and by the end of that year I couldn’t move, couldn’t walk, couldn’t do anything,” she says.

“Basic tasks were suddenly a struggle. Walking, talking, eating, even breathing. I had low energy, couldn’t do things.

“I went to the doctor and they said ‘oh maybe you have a bit of asthma’, but I just never got better. I got progressively worse. No one could work out why these symptoms were there.”

As her friends discovered boys and dating, partied and planned for formals, Amelia slipped into social isolation, incapacitated by a mystery illness. Plagued by constant energy slumps, migraine headaches and breathlessness, she dropped out of school to study part-time. Her work fell behind, her friends withdrew.

Doctors were baffled. Test results and scans came back negative. According to all medical advice, she was a healthy girl — a healthy girl who sometimes couldn’t stand or get out of bed.

With no diagnosis, and therefore no treatment or cure, Amelia fought through her teens and twenties. She scored her dream job as a freelance stylist and magazine journalist, collaborating on fashion campaigns for clients such as Country Road and even started her own fashion label, Envious.

But sickness hung over her like a pall. She always felt tired. She endured nausea, fainting and splitting headaches, seemingly brought on by nothing. A normal life seemed more and more unattainable.

Then one night in 2008, on the eve of her 33rd birthday, everything came crashing down. “My body gave out, virtually overnight. That was it,” she says.

The rising young fashion designer was suddenly bedridden, too weak to sit up, wash, dress herself or even speak. Everything became a source of pain — her food, clothes, bed and beloved fashion magazines all started to make her inexplicably sick.

Smells would set her off — the scent of her neighbour’s cleaning products drifting in through the window would cause her throat to close up and leave her shaking in the corner of the room, drifting in and out of consciousness.

Even tap water became like poison, making showers an excruciating ordeal. Sleeping in a newly vacuumed house was enough to send her to the emergency room.

And then she became allergic to electricity. Most of us don’t register the constant buzz of electricity around us, radiating from our appliances, light bulbs and the wiring in our walls, but for Amelia it suddenly became a toxic force.

“I spent about seven or eight months without lights or television, without a phone, without anything. Without a shower. It was severe,” she says.

“I couldn’t even have the lights on, so I would just sit in the dark. I had a torch for emergencies, and that was how I lived every day. I had no contact with anyone, no one visited me, my parents just kept me alive, basically.”

Her mother Danija and stepfather David came by daily to care for her, washing her with purified water from a bucket, trying to feed her something, anything that wouldn’t make her sick.

“My airways burned all of the time. I was miserable, barely able to talk. My weight plummeted. I survived on just a handful of foods. I struggled to hold my body upright in a chair,” Amelia says.

“Even after years of fluctuating fatigue, I had never known weakness like this. Crippling. Honestly, I felt I would die.”

At just 33, Amelia was facing death from an illness she couldn’t even name. Then one night, in a bout of desperate loneliness, she turned on the television despite the pain it would cause her, and a reality show saved her life.

“It was The Bachelorette,” she laughs.

“Literally the moment I flicked it on, this guy was having a conversation and sharing his health journey. He was being treated for environmental illness, and part of it was all these symptoms that I just totally related with. There was some kind of ‘aha’ moment ... and I just knew that I had to pursue it.”

With help from her mum, Amelia found the man through Facebook and got a number for his US doctor.

“He was like, ‘Well you’ve had Multiple Chemical Sensitivity for ages. When did that begin for you?’,” she says.

“I was like, ‘What?’ I had never heard those words before, and it was this revelation. It all made sense. From there everything became clear.”

Environmental Illness/Multiple Chemical Sensitivity (EI/MCS) is an allergy to modern life. Sufferers have a hypersensitivity to chemicals in everyday objects, triggered by everything from perfumes to fabrics, furnishings, plastics, cosmetics and cleaning products, adhesives, inks, dyes, building materials, dust and certain foods, as well as the electromagnetic fields from appliances, wiring and wireless internet.

Symptoms can include fatigue, dizziness, nausea, headaches, breathing difficulties, muscle pain, skin rashes, chest and abdominal pain, depression, mood swings and even psychotic episodes.

Perhaps due to its sensational nature, the condition has received increased exposure over the past few years. It even features in new hit drama Better Call Saul, in which actor Michael McKean’s character suffers from a form of electrical sensitivity.

Yet EI/MCS is not a formally recognised disease. Medical opinion is divided on the nature of the condition. Some doctors believe it is psychological, a form of somatic symptom disorder in which a patient’s emotional distress manifests itself as physical symptoms. Others believe, as most MCS sufferers do, that it is triggered by chemicals. Amelia thinks hers was brought on by exposure to white ant pesticides.

Some critics claim the illness does not exist at all and that sufferers are faking it.

However, MCS is recognised as a real condition by the Australian health community. A 2008 SA Health Department report said about 16 per cent of SA adults identify as having some sort of chemical sensitivity, with 1 per cent self-reporting as having MCS. In 2010 the department introduced public hospital guidelines for dealing with MCS-affected patients, which were later adopted in Victoria.

But without any diagnostic or clinical guidelines, there is no way MCS can be formally diagnosed; “medically unexplained symptoms” is the typical diagnosis.

“It’s not like you go to a doctor and there’s some magic test or blood test that proves you have this,” Amelia says. “There are a couple (of physicians) in Australia that treat it, but very, very few. It’s very difficult to find people who understand.

“It’s just an endless quest for answers and understanding. When you don’t have a diagnosis or a test result or an explanation for why you’re sick, there’s always that endless pursuit.”

“You’re a bit fragrant actually, do you mind if I give you the sniff test?” Danija asks the minute I enter the house, a modern bungalow set off a winding road in the Adelaide Hills.

Amelia waves softly from behind the glass door of her “safe room”, the edges of which are stuffed with bubble wrap to prevent any outside air from entering.

Usually the pane is covered with things for her to read — newspaper articles, postcards from friends overseas, photographs of New York, her favourite place. Sometimes Danija sits in front of it with a book, turning the pages for Amelia to read. She calls it their “communication door”.

Danija leans in to my neck and takes a deep whiff; I am wearing no make-up, deodorant or perfume as requested, but she determines my dress has traces of laundry powder on it, even though it was last washed five weeks ago.

“It’s amazing how much chemicals just stick to you,” she says, telling me not to get too close to Amelia’s door. “If I’ve been out shopping, or if I’ve been to the chemist, I have to have a shower because it gets in your hair, it clings to you.”

Danija, who cares for Amelia full-time after quitting her teaching job several years ago, is wearing a slick of lipstick for today’s SA Weekend photo — a rare treat in a house where chemicals of any kind are forbidden.

“If I go out I might put a little bit of lipstick on and a bit of mascara, but never in the house,” she says. “I haven’t even dyed my hair since 2010.”

They’ve made an exception for me, but usually visitors are asked to shower and change into something from the family’s “safe clothes” stash — a basket of tracksuits, pants and T-shirts that have been repeatedly washed and “detoxed” with bicarb soda and vinegar to rid them of any chemicals.

Despite the ritual, which has to be undertaken every time Danija and David enter the house, there are many places they just won’t go. Dry cleaners, hardware stores and gardening centres are off limits.

David even had to return a brand-new car after they discovered the invisible chemical residue it left on their clothes sent Amelia into anaphylactic shock.

“We went up the hill to have a little meal together, less than five minutes drive,” David says. “We came home ... I had a shower and got changed and I went into her, and she just went ...” He winces as he mimes her recoiling.

“She couldn’t breathe. We realised that I wouldn’t be able to live in the house in any kind of a normal way if I kept that car. I was so upset about it.”

It’s part of a process they’ve got used to since Amelia moved back home, into what used to be the living room, now specially modified. The decorative archway that once led to the front hall has been covered with a large metal door and the old hardwood floors were topped with galvanised iron and tiles, all of it handwashed multiple times with vinegar and bicarb.

The airconditioning ducts in the ceiling are closed shut, the old gas heater covered and inoperable. In summer Amelia relies on wet flannels and trays of ice cubes to keep cool, even though the floor-to-ceiling windows mean temperatures in her room can reach over 40C. In winter, when the Hills can sometimes dip below zero, she stays warm by cuddling flasks of hot water.

But despite all their precautions, it’s exceedingly difficult to keep Amelia entirely protected from the outside world. When council workers arrived unexpectedly in their street and began feeding tree branches into a wood chipper, she collapsed from the pain. Fire retardant sprayed near their house by the CFS during the January bushfires caused her to have an anaphylactic attack.

And sometimes the outside world is forced to come inside — like the time Amelia had to have a tooth extraction, without anaesthetic, on the kitchen table.

“They told me ‘this is going to be the worst pain of your entire life’. It was worse than I’d thought,” she says.

For most people, a tooth abscess means a routine trip to the dentist. For Amelia, it meant 12 months of constant pain as she desperately searched for a dentist who would not only do a house call, but perform 19th-century style surgery without any chemicals or anaesthetic.

“I think there are two or three people in Adelaide who would even consider it. I found this guy and begged him, and he agreed to do it,” she says. “They came and set up a mini surgery with all the tools. We set up in the kitchen. And then he just ripped the tooth out of my jaw.”

In the old days, people prepared for such trauma with a slug of rum or brandy. Allergic to every drink except purified water, Amelia didn’t even have that luxury.

“I said a little prayer. You gather yourself, dig deep, and you just have to go with it and trust you’ll be OK,” she says. “I can handle a lot of pain — from what I’ve been through, you learn to deal with a lot. But this definitely topped it ... It was like ripping nerves out, incredibly sharp and awful pain.

“Fortunately it went better than we could have hoped for. It just came out, it didn’t break or shatter. The whole thing was probably 20 minutes — it was OK.”

It’s a typically upbeat appraisal of a situation most would see as totally grim. Then again, to an outsider, much of Amelia’s life looks grim.

There is no furniture in her room save for a small metal table holding a water jug and a set of shelves with a few knick-knacks. Her metal cot has no mattress — it’s impossible to get one that doesn’t contain irritant materials — so she sleeps on piles of folded-up blankets, exacerbating her back pain.

She can use her iPhone for a few minutes a day to check text messages, email and her Facebook page, on which she has more than 1000 fans who follow her health updates. She spends hours composing posts in her head, preparing to type them quickly before her phone’s electrical field plays havoc with her body.

She can’t read books or magazines because the ink makes her ill, and listening to music tires her out. She can watch a bit of TV — up to half an hour at a time on a good day — and prefers live morning shows such as Sunrise and Today because, she says, she misses seeing people “naturally chatting and interacting and laughing”.

“When you’re an isolated person, you don’t have that interaction of watching people’s faces when they’re talking to you ... and you don’t realise you miss that until you don’t have it,” she says.

She meditates. She sleeps. She can look out the window at the garden, and even open it for a short time “if it’s not hugely windy or if the neighbours aren’t mowing the lawn”.

“It all varies depending on if I’ve had a reaction to something, then I might be wiped out for the entire day and I can’t do anything,” she says.

“In this situation, any energy you have you just devote to survival. If I have energy it’s to speak to a doctor on the phone or to look up research. All that other stuff in life just falls away, purely because there’s just not enough energy to go round. You get to a point where you just feel a bit like a robot.”

Her diet consists of five foods — carrot, pumpkin, banana, tuna and lentils — all of which have to be cooked for hours until they break down and turn to puree. Danija and David do all the cooking in a makeshift kitchen under the outside veranda, because Amelia can’t tolerate the fumes.

Each ingredient is rotated, one per day; there’s a schedule pinned to the fridge. Ask Amelia what she misses most and it’s not pizza, ice cream or chocolate, it’s raw food.

“I miss fruit and salads. I really miss fresh juices. A fresh peach, a handful of cashews, but I just ...” She trails off. “I don’t allow myself to go there. You just don’t linger in those sorts of wants. You just learn to hold on to what you have and be grateful.”

This attitude seems extraordinary. But in Amelia’s eyes, she has much to be positive about. Since she moved back home in 2009, she has found new stability. Having just turned 39 and living with MCS for a quarter of a century, she knows her triggers and how to avoid them. She knows her energy limits. She spends as much time as her body will allow researching the condition, communicating with doctors and other sufferers, and every day learns a bit more about how to combat it.

And every so often she reaches a new milestone: the recent addition of turkey to her food menu, or listening to 30 seconds of Taylor Swift’s Shake it Off , the first song she’d heard in years. And in the past year she has started regularly venturing out of her room, wearing a face mask, to use the toilet and shower and reheat her own meals in the kitchen.

The big one is going outside. In September 2013, Amelia touched the earth with her bare feet for the first time in three years. She only lasted a few minutes, but the landmark moment made her cry.

Then came her most groundbreaking moment — a car trip to the end of the street.

“I was inconsolable,” she says. “That surprised me, how much that affected me emotionally, just seeing other people, human beings, just life ... going on without you, people not even thinking twice.

“Here’s me just having to be aware of every moment of my day and figure out solutions and staying alive and keeping focus and staying positive — and everyone just up at the end of the street, a whole world that was just going on with such lightness and spontaneity and being carefree. I was so overwhelmed with gratitude, I was hysterical.”

The next milestone Amelia hopes to celebrate is moving into her own home, a dream that after three years of research and construction may soon come true.

Dubbed the “Safe Pod” but described by Amelia as “essentially a shed”, the new multi-room dwelling is being specially built in the family’s backyard using chemical and allergen-free materials and shielded electrical systems specifically for MCS. It’s a project that sufferers around the world are watching with interest.

Construction has been a long and exhausting process, with Amelia having to test samples of every item, from floor tiles to insulation. It’s also been expensive: an entire shipment of supposedly allergen-free plasterboard from China had to be dumped after it differed from the sample.

No one knows how soon Amelia will be able to move in once the Safe Pod is finished, but the family is counting on it as the key to their return to normality.

“It will be a whole new world,” Amelia says. “I was joking with a friend, saying ‘wow, imagine, I’ll be walking from one room to another room, wow!’ ”

Until then, she says, she will keep her focus on gratitude and positivity.

“The more you ... choose to see the goodness and the positive, the easier it does become,” she says.

“I still have my moments where it all gets too much, but it doesn’t derail me like it used to. I don’t let anything, any setback, derail me permanently from my goal, my vision of wellness.”

Just a few metres beyond Amelia’s glass door, in the family living room, is a set of shelves crammed with books that she is too sick to read. One of them, a travel book, is titled, ironically, 100 Places You Will Never Visit.

Just a few years ago, everywhere outside Amelia’s room was a place she would never visit. Soon that will change. Soon, she hopes, she will have her escape.

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Amelia Hill’s website is AmeliaHill.com She is also on Instagram @AmazingAmeliaHill and on Facebook at facebook.com/groups/HealAmeliasLife. May 12 is also International Awareness Day for MCS — may12th.org