Sunday 9 April 2017

Woman confined to one room for more than 6 years because of her rare condition. Read her thought provoking story.





For more than 6 years, I've  lived in virtually one single room. Yep... you read right. One room....for all those years.

This has not been a self-imposed agoraphobic exile, a jail bird stint behind bars (although sometimes it feels like it), or even some kind of wacky Big Brother-esque social experiment.

Day after day, month after month, year after year, I remain separated from all of the wonderful and fantastical things that make life amazing. … my beloved family and friends, my greatest passions, my most treasured possessions, long hugs, delicious food, milestone moments, the blue skies above my head, the most awesome dreams I ever dreamed for my future … the ENTIRE World.

Why on earth have i been living like that?

This is what ultiple Chemical Sensitivity (MCS), Chronic Fatigue Syndrome (CFS) & ElectroHyperSensitivity (EHS) look like. And this is what has been happening to me.

People with EI/MCS are often pigeon-holed as “allergic to the 21st Century” or as the “Canary in the Coal mine.” Sufferers become hypersensitive to a multitude of chemicals (synthetic and natural), and everyday items commonplace in today’s modern world.

Some of these environmental triggers include but are not limited to: Fragrances, fabrics, furnishings, food … pesticides, paint, plastics, personal care and cleaning products …adhesives, inks, dyes, detergents, air-fresheners, building materials, dust, mould … even electrical appliances like computers, TV, telephone, heaters, electrical wiring and wireless & WiFi technology. The list of triggers can be vast, perplexing and seemingly never-ending.

Minimal exposure to some or all of these items can make someone with EI/MCS, horribly, horribly ill with disabling and sometimes life-threatening ‘allergic’ type reactions lasting hours, weeks … sometimes a 24 hour non-stop loop of symptomatic mayhem.

Environmental doctor and researcher, Dr Martin Pall suggests  –  “MCS people must be at least 100 times more sensitive than are normal individuals and perhaps a 1000 or more times more sensitive.”

I had BIG PLANS for my life … career endeavours, creative adventures, glorious sunsets, Central Park in Spring, a soul-mate romance, a family of my own. I was a freelance stylist and writer for magazines like House & Garden, Real Living, and collaborated on campaigns for clients like Country Road and MG Cars. I was even a fashion designer with my own clothing label. I loved my work. Surrounded by a symphony of colour, imagination and ingenuity at every turn, I was elevated by the Industry I was a part of, and I relished the opportunities ahead. But when I found myself in my thirties, confined within four walls and up to my earlobes in game-changing circumstances, my surrounds looked very different from the amazing life plan I had envisioned for myself.
I could no longer walk down the street. I couldn't visit the doctor, dentist or even a hospital. I couldn't go to the shops, visit a friend or go to any public place.
I couldn't read a new book, magazine or be around almost any newly manufactured item or regular everyday objects furnishings, clothing or bedding. Considered necessities like a computer TV, telephone or heater render me make me sick. I survive on a handful a foods on mono-rotation diet

Stripped bare of all potential triggers, my single room existence equalled a tiled floor and a small fold out bed. All my possessions went into storage. I spoke to people through a glass wall. Days were sent immobilised in a bed or chair. My Mum became my full-time carer.

 It’s been a stark, austere existence.

 ameliahill.com
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