LIFE. BUT NOT AS YOU KNOW IT.
For more than 6 years, I’ve lived in virtually ONE SINGLE ROOM.
Yep … you read that 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 this?
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. [For a more information about EI/MCS, triggers, causes and treatments READ ALL ABOUT EI/MCS
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.”
MIND BOGGLING? … I hear ya.
IMPOSSIBLE? …Think again.
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 a 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.
ALL THE THINGS I’VE EVER LOVED AND THRIVED UPON, in many cases, have been erased.
GONE are my collections of clothes, fabrics, artworks, design tomes and the comforts of familiarity and home. Gone are scrumptious salads, Superfood smoothies, reading the Sunday papers, lunches with the girls … side-splitting belly laughs, fun days out & about, DVD nights on the couch … romantic dates, toe-curling smooches, long drives with the radio on full blast … spontaneity, freedom and hugs, oh HOW I’VE MISSED BIG SQUEEZY HUGS.
COUNTLESS landmark moments have escaped me too … my best friend’s wedding, my niece’s Calisthenics performances, once-in-a-lifetime career opportunities, Birthdays, even Christmas … I’VE MISSED THEM ALL.
It’s the people, places, possessions and experiences that give our world colour, dimension, reference and meaning … infusing our lives with joy, excitement, pleasure, a sense of adventure, fulfilment and soulful purpose.. It’s these beloved things … the currency of our physicality, that makes life … well …Life. Some may even say, makes life worth living.
What would you do, if all those those precious things, the uniquely YOU collection of things that gifted you pleasure, passion, purpose … what if they were all erased ? …plucked from your world one by one until there was only empty space where they once were?
Would it still be YOUR life?
Could it still be an AMAZING life?
A MEANINGFUL life?
HOW IT ALL BEGAN
I was just 15 years old when my seemingly healthy body changed it’s course. Over the space of a few short months, basic tasks were suddenly became a struggle. Walking, talking, eating, even breathing. Scary? You bet.
Doctors shrugged their shoulders. Despite my sudden explosive array of symptoms, they could not really explain my mystery illness. Maybe it’s a virus? Maybe Post-Viral Fatigue? they prognosticated. Some even suggested that I was imagining it all. Too weak to argue, I was carried back to bed. Some imagination.
Without a concrete diagnosis or prescribed treatment plan, what was I supposed to do? How would I get better?
I was a young girl facing a tough battle and a heap of MONUMENTAL LIFE LESSONS …grown-up lessons … mortality, isolation, fear, abandonment, uncertainty. When all my teen friends were immersed in school Formals, dates with cute boys and Chow-Wows with greasy burgers and vanilla thick shakes, I studied health books, discovered alternative healing, recited affirmations, learned to meditate. I ordered special wheat-free bread and ‘Green Magma’ drinks from the local health food shop (this was circa 1990… Gluten-Free and Green Smoothies hadn’t been invented yet!) My entire wholesome new lifestyle raised a few eyebrows and provided fodder for nasty back talk. Worlds apart, my Besties and I grew apart. It was tough.
Over the next 3 years, I applied everything I had learned and slowly, slowly, I got stronger. I finished my education, got a part-time job, a blue-eyed boyfriend and moved out of home. I still got tired and a bit short of breath at times, but I really thought that I had my do-over. I believed the worst was behind me.
Over the following years, I grew up, carved out my career mojo, started my own fashion label, nabbed styling gigs with high profile clients and chased fun with my friends. But, my health was never 100% … far from it. Plagued by perpetual fatigue, shortness of breath, nausea, pain, anxiety, weakened immune function, periods of total bed-rest, and a growing list of weird, unexplainable ‘sensitivities’. I engaged in a daily dance between what I wanted to be or achieve, and what my body would actually allow me to keep up with. Ashamed of my physical limitations, I hid the extent of my suffering from my friends. But behind the scenes, I continued my quest for answers.
I sought counsel from countless medical specialists, naturopaths and healers, and even though test results showed a few irregularities, no one could tell me definitively why I felt so horribly ill. Blood tests, X-rays, spinal crunches, pills, potions, yoga poses, juicing, fasting, psychotherapy, prayer and spiritual healing. Traditional, Alternative, Conventional … and holy moley guacamole, you wouldn’t believe me if I told you. But desperate for a cure, I did it all.
Vacant stares, dismissive remarks and invalidation were common across the clinician’s desk. And with a bulging medical file and a barrage of appointments with fanciful ‘experts’ under my belt and still no diagnosis … I was labelled a hypochondriac.
Feeling OVERWHELMED & DEFEATED, my self-esteem crumbled and my enthusiasm for living departed. A string of full-blown panic attacks followed, along with several treacherous bouts of depression.
I felt broken.
I felt powerless.
I felt TRAPPED within a body which didn’t work properly AND with zero hope of it ever being any other way. Worst of all? No one seemed to really believe me or take my symptoms seriously.
I felt completely alone.
Unwell for almost 20 years, exhausted, humiliated and thoroughly abandoned, I’D HAD ENOUGH. Desperate to regain my health and lead a normal, full and happy existence, I took a radical new approach.
Perhaps this was just “all in my head”, as a couple of ‘experts’ in white coats had told me. I wasn’t really sick, I just THOUGHT I was… so I decided to take (GULP) their word for it. Ignoring the rampant cries of distress from within my body, I hammered through my physical pain & excruciating fatigue and pushed myself like never before. Mind over matter I told myself. I pursued my dream career opps and ramped up my social life to match my peers. Nothing was going to stop me from living my life. I WAS WRONG.
DIAGNOSIS
In 2008, just before my 33rd Birthday … MY BODY GAVE OUT. Virtually overnight … that was it. Bedridden and too weak to sit up, to speak to wash or dress myself … EVERYTHING seemed to make me sicker, including three weeks in hospital. Food, dust, clothes, smells, sounds, mould, my bed, the shower, the TV, my books, nutritious supplements, even people … MY BODY APPEARED TO BE REJECTING THE WORLD.
My Mum & Step-Dad came daily to feed me, dress me, comfort me. Mum held my head up and washed my hair because I couldn’t. She sat with me when I couldn’t breathe and my lips & nails turned blue … which was often. We pleaded for medical intervention & support … but we received more shrugged shoulders. When electricity started to trigger even more symptoms … I didn’t know what was happening to me. When I tried to explain it, people thought I was losing my mind. I spent almost one year minus lights, TV, phone & heating. I lay in bed 24/7 with a torch by my side for emergencies.
My neighbour’s chemical-based cleaners drifting in through my vents & windows made my airways close up and left me shaking in the corner of the room, drifting in and out of consciousness. It was horrific. When the Landlord switched the shower water from rain water to mains water, my body rejected that too. My Mum then carted in bottles of twice filtered water & bathed me from a bucket. Sleeping in a newly vacuumed house sent me to the Emergency Room.
I felt SO toxic, SO poisoned … sick, sick, sick. My sense of smell sky-rocketed to Super-Hero status and my airways burned all of the time. I was miserable.
Barely able to talk due to severe shortness of breath, I scribbled words down in pencil. When my arm tired, hand gestures, whispers, smiles and tears had to suffice. My weight plummeted. I survived on just a handful of foods. I struggled to hold my body upright in a chair. Volunteer Carers stopped coming. Doctors suggested a Nursing Home. Even after years of fluctuating fatigue, I had never known weakness like this.
EXCRUCIATING.
CRIPPLING.
Honestly … I felt I would die.
So fragile, it just seemed that my heart would stop beating, my lungs would stop breathing. Scared, deteriorating and with no way out. I was at the end of my ‘Cope Rope’.
One evening, alone in the dark and craving human contact, I flicked on the TV for a few moments of company. That one, seemingly innocent decision, would prove to be PARADIGM CHANGING.
On the box that night, I saw a young man talking about his own health battle. I had never seen or heard of this person before, but I felt compelled to watch. I’d heard a gazzilion stories over the years, but this time, something was different. His recount sounded familiar. Too familiar. His words reached right inside my brain cells & FLICKED A SWITCH. Something told me to act.
I tracked down his sister on-line, then the doctor who had treated him. Within a fortnight, I was in contact with that very same doctor on the other side of the Globe. After studying my entire history and copious test results, the doctor responded… “So, you’ve had MCS for quite a long time it seems.” “MCS?” I questioned. He replied … “Multiple Chemical Sensitivity”
And there it was. Three words I had never heard before. In all of the 100s of conversations with ‘top’ medical experts, no one had ever mentioned these three words to me. NOT ONE, NOT EVER.
Within days, I had located an on-line community of people from around the world who were living my EXACT life. My EXACT symptoms. It was a complete relevation.
Imagine, two decades of invalidation, uncertainty, crippling chronic symptoms with NO explanation. A plethora of unanswered questions had littered my past and future like a series of blurry random dots stretching the length and breadth of my life. Then, those three words … MULTIPLE CHEMICAL SENSITIVITY… like a line of unification, intercepted them all at once.
Suddenly, everything was crystal clear.
My entire story made perfect sense.
I took a deep breath and drew a line in the sand. But, after 20 years of misdiagnosis and wrong-treatment, my body had deteriorated to a dire state. No one was sure I could ever recover. I FINALLY had the answer I had been searching for my entire life, and now at last, I could connect myself with actual physicians & health professionals in the field of Environmental Medicine who had a real clinical understanding of MCS. But it was becoming clear that it might be too late.
TURNING POINT
I soon learned that MCS/Multiple Chemical Sensitivity was often (but not always), triggered by a singular, significant chemical exposure. A common trigger is pesticides. And, as we delved into my past history, we recalled that the home we as a family had moved into a few short months before my ill health mysteriously began at age 15, had been chemically treated for termites. The most chemically concentrated area, had been right underneath my bedroom (genetic testing recently confirmed that these pesticides are still attached to my DNA some 25 years later). It was now looking very likely that I had been chemically injured by that significant exposure & this was responsible for my ill health.
With this new found medical intervention & support from other sufferers, I also discovered that MCS is a complex, multi-system illness with few avenues of treatment and even fewer stories of recovery. The most crucial factor in management & treatment, is TOTAL CHEMICAL AVOIDANCE and living in a chemical-free home environment.
Minimising daily environmental exposures can lessen the total body burden of chemicals in the tissues and hepatic detoxification pathways, reducing symptoms and allowing the body to repair. Failure to do this, can lead sufferers to experience the – ‘SPREADING PHENOMENON’ – which is a mass sensitisation to additional chemicals & other environmental factors which were previously tolerated like… foods, clothing, fabrics, bedding, paper, water, essential oils, wood, supplements, electrical appliances etc This is a very fast, slippery slope, and for me, the dreaded ‘Spreading Phenomenon’, HAD ALREADY BEGUN.
I was room-bound in a house infiltrated with all the things that made me sick … mould (verified by a special test which showed an elevated indoor mould spore count), interior fittings like carpet, vinyl flooring, furnishings and belongings. And, from neighbours, pesticide/herbicide sprays, chemical cleaners, wood smoke and Wifi. I HAD TO MAKE A CHANGE. But, a long search for safer rental accommodation proved futile.
I couldn’t see a way out.
I couldn’t see a way forward.
So, I decided to go public with my story and reveal to the world what MCS had done to me and my life.
After years of illness induced isolation, millimetres away from total collapse, I felt exposed and scared – what would people think? “Look at that Bubble Girl- what a Freak!”
Yes, there were a few people who turned away, some even ran for the hills & boy, did they run, but overall, the positive response outweighed the negative. A letter writing campaign and fundraiser was organised to support me. People from across Australia & the Globe sent me messages of encouragement, love and prayers. I WAS FLOORED. I WAS HUMBLED. They thanked me for my courage. They shared with me their own healing battles. Many of them also living with MCS just like me. Quite a few had also become ill following pesticide treatments to their homes, workplaces & schools.
I began to see my story through the eyes of others, and felt love and compassion for myself for the very first time. A strength began to swell inside of me … I wanted to survive this. I knew I had to fight for my life. I was ready. I wanted to live.
Riding on the back of courage, I was bundled into a car and evacuated to a tiny Atrium Room at my Mum & Step-Dad’s house.(1.5m x 4 m) where I stayed 24/7 for three long, cold Winter months while a larger room was stripped, modified and sealed to make it more tolerable for my highly sensitive body.
I got worse.
My weakened body was so fragile, toxic & hypersensitive, it struggled to cope with this dramatic change in surroundings. It was rough, really rough, but we hung on and eventually I plateaued.
Another line drawn in the sand … I started over.
Over the next two years in my new ‘Safe Room’ and with the tireless support of my Mum & Step-Dad, I celebrated every small milestone I could get my hands on … standing up, dressing myself, showering myself, reading a book (through a glass wall as my Mum turned the pages on the other side), watching some TV, touching my feet to the earth … the first time in three long years. UNBELIEVABLE. And the most amazing milestone of all … a five minute trip in the car to see the world at the end of the street.
Yep, there were tears, LOTS of them. GRATITUDE BEYOND MEASURE.
Being completely room-bound & hypersensitive to the world has its handicap and its heartache. Specialist Doctors and healthcare workers are NOT in the habit of offering house calls … it’s a RARE thing to find one who is even willing to speak with you over the telephone. The last top allergy specialist I appealed to (uh.. begged) to please help me with my severe food allergies … (I’ve eaten the same 6 core foods cooked, puréed to mush on a mono-rotation diet for two long years) … sent me a letter some weeks later stating that unless I was well enough to actually sit in his office, he would NOT speak to me. Another closed door. And not the first.
My heart breaks for the many MCS sufferers who spiral into severe mental illness or even take their own lives, but I completely understand why. I have felt that heavy weight of depression before.
The repeated rejection, invalidation and lack of support, treatment and understanding, breeds utter soul-destroying hopelessness and annihilates even the most positive minds.
Many sufferers have lost their homes, their careers, the biggest dreams for their lives, hobbies, passions, relationships and all of their treasured mementoes and possessions. Many are ostricized by their own families, friends, entire communities. Many are labelled ‘crazy’, ‘weird’, ‘hyperchondriac’, even a ‘freak’. A reality too difficult to imagine and even harder to live.
Abandoned by many traditional parameters of illness, sometimes it has felt like I’m left to research this disease & any possible treatments entirely by myself. A task made even more frustrating & near impossible because of my reactions to computers, telephones and books.
As a result of the years of misdiagnosis & wrong treatment, my body has deteriorated to such an extent, that it now struggles to tolerate the MCS treatment options currently available.
A safe living environment free from environmental triggers is a CRUCIAL component in MCS management & treatment. My temporary ‘Safe-room’ was never going to be a long-term strategy. I had to think bigger.
MY NEXT MOVE? A ‘Safe-HOUSE’ … a new larger living space constructed of safe/inert building materials. A completely Environmentally Friendly and Chemical-free Sanctuary for me to live. A place with greater space & independence, and most importantly, a place to HEAL. Sounds like a colossal project? It is. For more info on my Safe House Building Project READ All about Safe Pod
BRAVE NEW PERSPECTIVE
Serious illness was never a part of the dream I had for my time here on Planet Earth.
But what I now know first hand is this …
A crisis of health is ALWAYS a game changer. A back-flippin, mind-blowing, reality-stopping, identity re-shaping, belief-busting, life-rewriting, GAME-CHANGER. A radical and cataclysmic catalyst for TOTAL Self-Transformation. NOTHING ELSE COMES CLOSE.
Relentless physical suffering, heart-wrenching decisions, isolation, fear & a near constant stream of seemingly insurmountable obstacles completely shattered my personal paradigm and catapulted me onto a fast-track of unimaginable self-discovery and spiritual evolution. No other experience has ever required me to require so much of myself.
Alone, I dug deep and was gifted with the unexpected – an all-mighty new-found strength, an absolute clarity of vision, an all-encompassing gratitude and self-love UNLIKE ANYTHING ELSE I HAD EVER KNOWN BEFORE.
Confined to just one room for so many years, and consumed with a TOTAL HEALING MANIFESTO, sparked within me a revolutionary type of inner dialogue, AN UNBRIDLED TUTELAGE FOR THE SOUL.
A rare and highly provocative conversation with my deepest most sagacious self, one which I had never explored to these depths before, one which I could never have anticipated and one I probably would never have had, if not for the illness itself.
The toughest and most gruelling questions and the most beautiful, profound truths all wrapped up into one reality-shifting brain-bomb.
EVERYTHING I ever thought I was or could be.
EVERYTHING I ever knew to be true.
EVERYTHING I ever valued, believed in, longed for.
Every word, every dream, every idea … rewired, rewritten, refashioned, re-prioritised in a nanosecond. A completely new way of thinking, being and seeing myself and the entire world around me officially downloaded …. This girl was CHANGED FOREVER.
When all the fantastical things, the people, places, possessions, experiences, hopes & passions that filled my life with colour, dimension & meaning were gone … the emptiness was stark … the aloneness, palpable. These were the very things that I thought made me who I was. Made my life meaningful.
But, it it was only when my world became completely stripped back … empty, void of form & distraction … & I was faced with some of the toughest challenges I ever could have imagined, was I gifted my greatest, most game-changing treasure. The real me.
Now I know, without doubt, that I am stronger & more courageous than I ever realised. I’ve proven to myself, many times over, that I absolutely have what it takes.
And not only did I finally understand that I was enough, exactly as I was… illness or no illness, but who I was, had nothing to do with anything external. The REAL me would always radiate beyond the boundaries of the physical world. Beyond test results or the opinions of others … beyond the things I felt constrained by, limited by, including the four walls which had become my home.
From this perspective, a BRAVE NEW PERSPECTIVE … my healing … after 20 plus long years of searching … my healing finally began.
Your current scenario may have flattened you.
You may feel like the world has served you more than you can handle. You may not even recognise yourself.
But this is what I know.
Within you is a power.
A force of enigmatic proportions which is no match for the obstacles you face.
And your absolute brilliance, your immeasurable potential, your innate worth as a human being cannot ever be tethered by anything. Not by circumstance, by pain, by mountainous barricades, road blocks or seemingly unconquerable setbacks.
Who you are. Who you REALLY ARE … the REAL you, is INFINITELY brighter than all of it. Your suffering, your story, your past, your possessions, your pain, your losses, even your health status. NOTHING can ever limit what makes you, you. Your soul identity … THAT’S the real you.
So don’t be afraid of back-flippin’, mind-blowing, reality-stopping, identity re-shaping, belief-busting, life-rewriting, game-changing moments.
Because I believe, when you choose to seek out the power-clad wisdoms, the crucial evolutionary lessons and even the unforeseen blessings which lie within every situation, every challenge, every conundrum, every hardship … even within the paradigm shattering scenario of serious illness, you will discover some things so profound, that they have the potential to reshape your entire perspective, your world and even your destiny.
Phheww! That was a lotta words! Thanks SO much for reading my story- want more? Check out {12 Moments That Changed My Trajectory} and {Media}. Let’s get better acquainted – share some deets of your own health quest below!
Beautifully written Amelia! Thank you for sharing yourself with me today across the large, blue pond. I, too, am EIMCS with severe electrical sensitivity. I am on my Iphone that is burning me. I shared your story on my FB adding my own bits. Coming out of the closet and wondering how people respond. Thank you for your light to help shine my way.
You’re a wonderful writer. You have a gift and I’m grateful to your using it. How do you write if you can’t do computers? I hemorrhage after short snippets in the cell.
You are a blessing. I am so happy to read your story and feel a sister out there.
With compassion and appreciation,
Raven
Hi Raven,
Thanks so much for reading my story & for your kind feedback. I really appreciate it!
Yes, Electrical Sensitivity can be truly horrible. I’m so sorry to hear of your symptoms. I am now able to use my iphone to check social media & type in short bursts. Anything more and I have to write by hand with pencil & paper & ask someone to type for me.
Thanks again for your message & I’m sending you some healing hugs from the other side of the pond!
A xx
Wow, honey. What an amazing story to read from start to finish. Beautifully written
You, wonderful woman, really are the ultimate proof that each of us already are who we seek. We may try and do it through a myriad of external things, but most of the time this actually distracts us. A lot of the external (or the Maya) prevents us from coming back within and truly striking the deep vein of priceless gold within us.
And you’re already there, shouting: ‘EUREKA! Check this out!’
You’re such an inspiration. Sending you so much love and light from Brisbane.
Love Carly xxx
Hi Carly!
Thanks so much for reading my story.. I know it was a long read!
I so appreciate your kind feedback … & yes you are so right … It took me going through this experience to figure out once & for all that thing I was searching for was there all along.
Sending love & light back your way too, Gorgeous.
A x
Thanyou!!!! For being you, and for sharing all the beauty that you are with us. Sending love and healing vibes, Always. XO
Thanks for those healing vibes, Leah! Feels SO good!
I so appreciate you taking the time to read my story!
A x
Amelia, what an incredible story! I am weeping because I feel your truth so deeply. Your story and your awakening has deeply inspired me. You are an incredible, gorgeous human being and I am very grateful that you shared your experience. I am sending you love across the ocean. May you always know your truth.
And I am so grateful that you took the time to read it. Thank YOU lovely, Teresa for your generous words. I believe we are all here to inspire each other on our individual journeys… because we are all in this together, right?
A x
I am so happy that you are finally able to tell your story! You are a fierce fighter Amelia, and I am so blessed to have you in my life. We have celebrated some beautiful moments together on opposite ends of the globe and I know our victories are far from over. I am cheering you on every step of the way! XX
As I am blessed to have you in my life too, Jenny!
And yes, what a journey we are all on … if not for this healing journey we may never have met!
Cheering you on too, Girl!
A x
Hi Amelia,
I too suffered with Environmental Illness for over a decade. I too was down to only 4 foods. I too was confined to my safe space unless extreme measures were taken to protect myself.
I am cured.
Please consider the findings in neural plasticity, and read the book, “The Brain that Changes Itself” by Dr. Norman Doidge. Our brains continue to make neurons and neural pathways, and for whatever reason, people who get mcs/cfs\fm etc start to develop neural pathways that lead to illness.
There is a cure:
http://dnrsystem.com/ is Annie Hopper of Canada. Read her story and the testimonials to her program that she has developed from curing herself.
http://www.guptaprogramme.com/ is the program I adapted to my mcs (before he had made if for people with mcs.)
It isn’t all in your head… it’s all in your neural pathways which are misfiring.
I do not benefit in any way from this. Except to know that I would have wanted someone to tell me about this, back then. So please consider this. It works.
Debbie
Hi Debbie,
Thanks so much for your message & for sharing your experience here. I am SO thrilled to hear about your full recovery… CURED? That is truly music to my ears!!
I studied the Gupta programme 2 years ago & the DNR programme 6 months ago. I also spoke with a trainer. I practice every day & have applied all techniques & even developed my own as well.
These techniques have helped me in so many ways, yet I still experience severe reactions to chemicals & other triggers.
I would love to understand why some people experience a dramatic physical healing with brain retraining and others, like me, do not (yet).
Would love to hear your thoughts on this, Debbie?
Wishing you all the best,
A x
Hey Debbie,
You may not remember Amelia from Planet Thrive. She has been a long time member there, but was more active before she become EMF sensitive and had to limit her online time. She was active there during the time brain retraining became popular. Amelia, just want to remind you that Debbie Livealot (used to be Debbie Itchalot) has shared so many nuggets of brain retraining wisdom in the Gupta support group on Planet Thrive. It might be well worth a revisit to read her motivational posts – she helped many of us move forward when we were stuck in a rut and helped us to understand some of the more complicated concepts. xxx Julie
Thanks for the reminder about Debbie xx what an inspiration!
I used EFT as well as a variety of Limbic retraining techniques to gain my health back. To all extents and purposes I’ve cured myself of MCS.
That’s WONDERFUL news! Thanks for sharing this! I have been actively practising Brain Retraining for a long time- has helped me immensely but has not cured my chemical sensitivity yet. Do you have any advice?
Cured? That’s SO wonderful! Thank you for sharing your success!
Did you do Gupta & Annie Hopper?
Hi Amelia,
I noticed that Kath linked her name to her story on Limbic Retraining where she shared her process: http://www.limbicretraining.com/contributors/kath/getting-my-life-back-using-eft/. Just wanted to mention that since it does not appear you realized she shared that link. She used both the Gupta and Hopper programs but did not start to see real improvements in her chemical sensitivity until she did Matrix Reimprinting, and mostly, EFT. xx Julie
Thank you for posting the link. I have the Matrix Reprinting book. x
Amelia, this website sharing your life, your courage and your spirit is fantastic. I, too, have EI/MCS and reading your story came to me at a time when I really need some strength. My husband printed out a copy of your story for me so I can read it without kicking in the Wifi symptoms. I read it and re-read it. I do not exaggerate when I tell you I meet each day with more courage because of the example you set. You are phenomenal!
A big Texas hug from me to you,
Lucy
Lucy … Your words just touched my heart. Thank you, Sweet One. I am so happy to hear you found some inspiration in my story, but I have a feeling that you have so much inner strength & courage of your own. Keep moving forward as best as you can, I know you’ll get there xx
Have you considered heavy metal toxicity as one cause of your health issues? Also the disturbances this creates in your methyl cycle and nervous system.
Hi Jenny,
Thanks for that suggestion.
Yes, I have investigated Heavy Metal Toxity and fortunately it hadn’t been a major issue for me. I do however have some Methylation abnormalities which I am working on. Are you?
All the best,
A 🙂
Amelia, Thank you so much for sharing your journey. You inspire me to keep fighting for my life and to be grateful for the things that I am still able to do and experience. I wish you all the beauty and happiness that this universe has to offer! Thank you and here is a virtual hug. I am one of your MCS sisters. 🙂
Hi Marie,
Thank you so much for your lovely message & for taking the time to read about my story .. I know it’s pretty long!
Wishful you every happiness & I hope you’ll stop by here again soon!
A x
Amelia, you have had such an incredible journey. I don’t think very many humans could endure the struggles you’ve had and remain positive.
You are a beautiful person, inside and out!
Hi Matt, that’s so kind of you, THANK YOU!
Never in a million years did I think that I could face these challenges either… but I believe that we are all much stronger than we realise.
All the best to you .. & thanks so much for stopping by & reading about my story 🙂
Hi Amelia,
so sorry to hear your story. Mine is very similar. I got sick in 1979 at the age of 22 when I married my 1st husband. I got a weird flu-like illness, from which I never recovered. As time went on I developed severe MCS and food intolerance. I was treated like an idiot by the medical profession. Eventually they said I had ME or CFS, depression, anxiety or possible MS. We spent a fortune on doctors, tests, treatment that either didn’t work or made me sicker. I lost my career in Pharmacy, friends and my marriage due to 22 years of misdiagnosis.
My 1st husband had a peculiar, recurring rash in his armpit. Initially, I treated him with eczema cream which didn’t work. The rash was about 10cm wide and had a red ring around it. I thought it could be a ringworm, but it did not respond to ringworm treatment. Long story short, the doctor gave him cortisone cream which cleared it up and we forgot about it. Over the years I would pray and ask God what made me so sick. Often, during prayer I would get a flashback of my husband’s rash. I had no idea what it meant.
In around 2001 Professor Garth Nicholson came out from the USA and spoke on A Current Affair. He said that Australian CFS patients here were suffering medical negligence and that they usually have chronic infections which need treatment. This sparked my interest as on the RARE occasion I had abx (antibiotics) some of my symptoms cleared up completely.
I contacted Garth and sent lots of info. I found a doctor who would give me low dose intermittent abx. I got onto an internet support group of people who were using this protocol for CFS, RA, Scleroderma and a number of other “weird” illnesses. Seven months into the treatment I emailed the group, asking when I should get a turning point as it seemed I was constantly herxing. (when you kill certain pathogens they give off nasty neurotoxins, causing a Jarisch Herxheimer effect, which can make you feel shocking.) One of the ladies from the USA emailed and said she believed I have Lyme disease. I had heard of Lyme, but living in Melbourne all my life, I had never been bitten by a tick or even seen one for that matter.
She emailed back and said Lyme can be sexually transmitted. As I prayed about it, I got the flashback of my ex husband’s rash! I Googled “Lyme rash photos” and there it was!!!!!!!!
I eventually tested positive for Lyme. (Australian tests are not good.)
Four years of abx did not work for me as I was in the very last stages and had lots of neurological problems. I was also housebound as I had trouble breathing and car fumes made it worse. I believe I was dying. I could hardly breathe, eat, swallow or speak. I spent 4 years on a walking frame and many times in a wheelchair. I lived on pureed food for a year.
Then I discovered and alternative treatment at http://www.Lymephotos.com.
I went on this treatment 10 years ago and finally began to get well, after 3 decades of tremendous suffering.
The more I killed the pathogens, the more tolerant I became of foods and chemicals. My theory is that when your body is fighting chronic infection (often more than 1) your immune system is on red alert and treats everything as an enemy. Garth Nicholson also had patients who, when they killed the bugs, their MCS went away.
I am now back working in Pharmacy, driving, eating anything and living a good life. I swim most days, ride a bike, etc, etc. I no longer relapse. In fact, I don’t seem to catch all the bugs that my colleagues do.
I am still on maintenance dose and all my tests are excellent.
I don’t know if Lyme is your problem, but in the USA they found that over 90% of CFS patients have it. It may also be connected to MS, Parkinson’s, Motor Neurone Disease and others.
The bacteria is a spirochete similar to Syphilis, but much worse. It wipes out the immune system, so you can’t get well. If given abx in the 1st few weeks it is completely curable. After that it goes into the brain and nervous system, which effects every body organ. That’s why the doctors don’t believe you.
Anyhow, I hope you find my story helpful. I, too, tried many orthodox and alternative things which did not work. It was a living hell. I am so grateful to be as well as I am.
The Northern beaches of NSW are Lyme hot spots. I believe Lyme can also be transmitted by fleas, bird mite, sandflies, blood transfusion, breast milk, in the womb, mosquitos.
If you have any questions, please ask.
Wishing you health,
Rosemary.
Hi Amelia
Dito my MCS/elec radiation sensitivity/CFS/IBS. I too am nearly 100% well.From a wheel chair 6 years ago to walking on the beach every day, eating (organic/slow)nearly everything,tollerating a very stinky-world! & shopping,cafes & even dentist! The foundation of my healing journey is a natural therapy called BODY TALK.Its Energy Medicine, a bit like a holistic version of kinesiology which stimulates our own “inner-pharmacy” so we can heal @ our own pace & in the order our body is ready to do.. Amazing results for me & my younger brother who was @ rock bottom with CFS & a skin disorder, but very painful & debilitating. When he saw me getting well, he tried Body Talk & within 2 weeks his skin was clear! Like a miracle for him as he’d tried everything. My sister was so impressed with our healing, she is now studying to be a BT practitioner! Practitioners r Australia wide
if anyone is interested chek: ibaglobalhealing.com (International Body Talk Assosiation).
No I’m not on the payroll!!! just spreading the word for people who cant tollerate medications etc. & who r super sensitive, will find this therapy so gentle & effective. I still go to my Body Talker every 3-4 weeks for maintenance, but in the 1st few years i went every fortnight.
Others might only need a few sessions, depending on the individual. And ZERO HEALING CRISIS.
Unlike all other therapies I had tried, (alot!) each time I have a session I just feel better & better in every aspect of my life. Many thanks for your beautiful story Amelia, very inspiring.
Warm Regards Tracey O.
Hi Missy A,
Was reading through the comments here and your comment “I would love to understand why some people experience a dramatic physical healing with brain retraining and others, like me, do not (yet)” jumped out at me. It’s true that some people respond and others do not. It’s true also, that some people respond to slight variations in approaches, for unknown reasons. So I wanted to remind you of the Limbic Retraining website http://limbicretraining.com and all the success stories there. I encourage you to re-read the stories by T-Can, Linda, Bernie B, Kath, and even this article http://www.limbicretraining.com/contributors/julie/multi-sensory-brain-therapy/ and see if any of the techniques they used (EFT, FasterEFT, HAMR) or the exercises I mention in the autism program article might be things you could try. Someone on PT also had success with “Psych K”. You never know…I would try these other variations to see if you gain any improvements.
Also, wanted to ask – has anything you’ve done improved your reactivity levels at all? Is it really zero improvements on that level, or is there some improvement, even minimal?
As far as why some people do not improve with brain retraining, some people’s brain may not be as “plastic” as others, whether due to medications that reduce brain plasticity (e.g., Lyrica, Neurontin), or possibly a brain virus. I don’t know all the reasons but you could research causes of reduced brain plasticity or ways to increase brain plasticiy.
For myself, my brain was not very plastic for so many years I was doing brain retraining and it was not until I did a 2 week EMF fast that my brain all of a sudden could accept brain retraining much easier. So – think about potential brain inflammation triggers. If you’ve had mold exposure, but never took mold toxin binders 2x day or more for weeks on end, maybe you could try activated charcoal and/or bentonite clay. If you are exposed to WiFi or cell transmissions 24/7, turn it off for 2 weeks. Give the brain a chance to heal and then try the brain retraining again. Just some food for thought based on my own experience.
Praying that you can experience some relief soon. xx Julie
Hi Missy J! Thanks for sharing your thoughts, insights & recommendations… I really value them.
I will revisit your incredible Limbic Retraining website & recovery stories & articles etc.
I know I have been dedicated in my practice but you are right… There are so many unique ways to target & tweak practice for every individual. Everyone is different. I have developer my own techniques and evolved my personal practice routines as well. Being on my own most of the time, with limited online time, I’ve had to go courageously in new ways by myself really. But I always welcome further improvements & guidence from those in the know. Thanks for the reminder.
I spoke with one of the DNRS coaches on the phone early on in the piece too.
I must admit used to be so inspired by all the dramatic recovery stories (still am), but I noticed my frustration etc increase when I heard people who were doing much less practice than me etc and announced their total cure in a matter of weeks.
I’ve definitely noticed many signs of successful brain retaining in myself in other ways. Just not in the physical symptom capacity.
Thanks again for your thoughtful & detailed commentary, J xx
Hi again Amelia,
I also want to recommend you check to see if there are any Myofascial Release (MFR) Therapists trained by John F. Barnes practicing in your area who might be able to do home visits with you. Here is one therapist but I don’t know if West Perth is near you: http://mfrtherapists.com/listings/?state=Australia&country=AU. I would also search for myofascial release therapists on Google and ask them specifically if they were trained in the John Barnes technique. During his Healing Seminar last month, he said that MFR brings the body out of fight or flight mode. It also helps release trauma trapped in the fascia that keeps us stuck in physical and emotional patterns. This work has been LIFE CHANGING for me and continues to be so. I can’t say if it helps MCS or EHS since I was already improved in those areas, but it resulted in a huge reduction of inflammation in my majorly arthritic hand joints. I could not hold a pen or write when I started the treatment and now I can with no pain. It’s amazing. This might be a great avenue to explore since brain retraining has not helped much in all this time you have been practicing it. If you find physical therapists who do MFR (as opposed to massage therapists) you may get insurance coverage on treatments, depending on the system in Australia. I think you would really tune into the theory and concepts behind MFR. John was talking about how there are microtubules of light in the fascia system, that carry consciousness/love. The MFR work releases restrictions so the light/love/consciousness can flow without blockage. I had amazing experiences with energy moving through me after treatments. I can share more if we ever do a phone or Skype call in the future. Sending hugs. xx Julie
Is she near you? http://www.patriciafarnsworth.com/
Also just need to caution you… my doctor had warned me not to do MFR due to potential detox reactions to the work. Turns out my doctor had detox reactions to the work (and she does not have MCS). I, on the other hand, had the opposite experience. I did 3-4 hours of intensive therapy daily for 5 days, 3 weeks in a row. The only time I had a detox reactions (migraine) was the first weekend when I was not in therapy. It turned out that the therapy improved my detox abilities. And the improvements were permanent (so far). I have a much higher tolerance for die off from herbs and probiotics now. I typically do not have issues with detox and massage – and my doctor does. So if you do badly with massage, I would say not to do MFR or at least to proceed very slowly and cautiously.
Yes, as I mentioned don’t do well with massage. Thanks for sharing this added info!
Sounds truly incredible, Julie. It makes me really happy to hear how life-changing this process has been for you. Wonderful xx
Perth is across the other side of the country unfortunately. The massage person who comes to our house is not trained by your person, but has done some subtle trigger point work on me. I don’t have traditional massage because of my fatigue levels.
I will look into this technique though. Thanks for sharing your experiences w me. So appreciate. And again, SO awesome to hear how it’s helped you xx
Hi Amelia,
Thank you for sharing your story, and reminding me of the strength of the human spirit – yours, mine and others. It was encouraging to hear of the improvements you have had over the last 5 years – even though it may seem painfully slow sometimes. I have had heath issues for over 25 years that seem to be best managed by reducing my chemical exposures, which as you know is not always an easy thing to do. I have had multiple up and down cycles as I have not always been able to access healthy housing. My personal experience is that improvement is not always liner. On more than one occasion, I have had a period of stability/slow improvement which was followed by some small intervention that propelled me into a period of rapid improvement. I used to think those little interventions were nothing short of miraculous but have learned over the years that it is the months and years of hard slog that are the most crucial to my healing. I hope that you also find someday that you reach a tipping point of rapid improvement, but if not, slow progress is progress none the less. Also, tell your mum I think she is an amazing woman (mine is too).
All the best,
El
Ps. What sort of fold out bed do you use (sans mattress)? Does it have metal springs or is it more like a trampoline mat. If you or your mum could remember the make/model that would help too. Thanks, El
Hi EI,
Thanks so much for your message. Sounds like you understand this journey well. I am glad to hear of your improvements… Yes, sometimes those milestones may seem small, but they can transform quality of life.
Thank you for your well wishes too. I will continue to stay focused on brighter days ahead because I believe healing is possible for all of us.
I will definitely pass on your kind words to my Mum.. xx
& my bed is an IKEA chair which converts into a foldout bed. It’s a powder coated metal frame with untreated wood(birch?) slats. I used the mattress for s while, but after some hot weather 18 months ago, (MAJOR off gassing & reaction) I lost tolerance to it.
Hope this helps x
Thank you for sharing your story in such a beautiful, relatable manner. I have severe MCS and much of your story resonates for me. The impact of isolation (and yes, I so miss hugs!) can be profound and yet you have found meaning and hope where sometimes it appears fleeting. I appreciate your strengths based perspective and your story of inspiration that things can get better – don’t despair too greatly, time truly can heal with a bit of action! So trite but I always think about “one foot in front of the other”. Thank you for sharing, please keep writing as it is a wonderful medicine it and of itself : )
Hi Amelia,
I read your story in the paper and I almost cried. I don’t know what life would be like with hugs!
I hope they find I cure for MCS as soon as possible. Thank you for sharing your story in such a beautiful way.
Rosie xxxxx
Amelia, thank you for your sharing your experiences. The loss of “normal” life makes how you shine even brighter. It is so easy to dwell on losses rather than what we gain. Some days are good, granted not many,but appreciate what we do have. You mom sounds like an awesome person.
How are you doing now? Have you found a safe house yet?
I understand your suffering completely. 23 yrs following ross river, EBV, barmah forest unfathomable pain, mcs last 12 yrs. i have lost 1/2 my life, any chance of a career, family & friends. I did 5 yrs in a car. Even when I did find a balcony with glass around it I still couldn’t cope. I was on my own and emf sensitive I couldn’t even make friends online. So I have had no human contact. I have just been diagnosed with lyme but am very confused as I am not finding too much success with antibiotics for chronic lyme. I must have got it when I got the other. Now of course, I have so much more; addisons, thyroid, pancreatic, liver, kidney, immune, digestive, neurological problems. I see the remarks about gupta. I did nlp 15 yrs ago, gupta & biofeedback. I think nlp & gupta is a great way to live your life & especially useful for emotional issues. It certainly did nothing for any of my symptoms or my organs or my postural problems. Is there anybody in Brisbane who needs some company?
Hi Amelia, I have MCS too, but nowhere near as bad as you. Electrical sensitivity comes from heavy metal poisoning. Look for causes of toxicity in your body, particularly your mouth. Do you have amalgams (silver-coloured fillings)? That is mercury, the most common cause of all these problems. Did you have them before but you had them changed to the white filling and they were drilled out without any safety precautions? Do you grind your teeth or were you ever in an accident where you hit your head and gnashed your teeth together real hard, releasing the mercury in one large dose? Have you ever had titanium dental implants, bridges, crowns or braces? Your body can be allergic to these metals. Do you have a root canal? All root canals harbour anaerobic bacteria which produce highly toxic toxins which are spread throughout the body. There are no symptoms at the site. Have you ever had a tooth extracted, especially wisdom teeth? It is very common for that to turn into a cavitation, which harbours even more bacteria than a root canal. Do you have a metal implant or screws in your bone? Do you have a breast implant? All these are toxic.
Have you ever been vaccinated? Vaccines contain mercury and aluminium, which are highly inflammatory to the immune system. They also breed candida (a fungus), which grows in your intestines and causes leaky gut. This is the cause of your food allergies. Have you been exposed to mould? Perhaps a house where you lived had mould in the basement or the bathroom which you were not aware of. Many of your symptoms are common with a fungal infection.
I suspect you have had one of these between 15 and 30, which pushed you over the edge. Pesticides are not solely to blame. They do not take 15 years to sicken you. Look for other sources of toxins.
Also, a suggestion – get a desktop or notebook computer with a landline. This is way less radiation than a smartphone.
Oh, also many doctors do online consultations via Skype. Much cheaper than house calls.
Wow, I just saw your article on Daily mail. I can so identify with you, but my symptoms are not to your extent.
When I was about 19. I got bad chemical poisoning which caused my hands and arms to turn temporary yellow. I was sick for several months. Since that time, I have been sensitive to chemicals.
In 2014, it was like you, my body felt like it broke. I was reacting to everything. It was scary. Like I needed to be in a bubble.
I was also diagnosed in 2014 with Adrenal Fatigue, hyper sensitivity. Fodmap, salicylate & histamine intolerances just to name a few. I was scared. The reactions where scary.
The only thing I can safely eat since 2014 is meat. Nothing else. I have found eating fresh meat only has helped my health as it doesn’t cause inflammation.
Today, I still cannot cope with chemicals, anything that smells(purfumes, smokers, paint, toxic cleaning & personal care products etc etc )
I can’t even be near fruit & veg without them causing pain & inflammation, breathing issues etc.
I have to live in a chemical, non toxic environment.
You’re the first person I have come across that reacts like me, or worse, to many factors in modern life. I am sure there are more out there too, that we don’t know about.
I don’t know myself, what my future holds? I am nearly 50 now. Having histamine & salicylate intolerance means I cannot take medications as they have both these in medications. I am really at the Mercy of God & my times are in His glorious hands
Each day is a gift & I take it one day at a time.
Thanks so much for sharing. You’ve really inspired me. Thank you.
Superb and uplifting writing Amelia. Given what you have suffered, anyone and everyone should take inspiration from you and your journey. Thank you immensely for sharing this with the world, and best of luck in your healing. You have the determination and heart to make it, and I and many others wish you the success you deserve.
Now – if I may be a pedant for one moment! Towards the end of your piece you write “Within you is a power. A force of enigmatic proportions which is no match for the obstacles you face.”
I believe you meant to say that “the obstacles you face are no match for your inner power”. The way it is written means that one’s inner power cannot overcome any obstacles, which is clearly NOT what you have inspired! Sorry for being nitpicky – I’m an editor!
Kind regards – Diego
There is a MCS community in Snowflake Arizona.
Hi Vee,
Thanks for visiting my website.
Yes I am aware of the community in Snowflake.
A
Dearest Amelia, I’ve had MCS I believe since I was very young and noticeably at age 13 in 1975 following multiple pesticide, household and other chemical exposures (both my parents smoked) and primarily from a complete change in my environment when we moved from a large older home in Chevy Chase, MD to a modern ranch pre-fab home in Palo Alto, CA when I was 10. I’m 55 now and I’ve been extraordinarily fortunate to have not been injured physically as much as so many other MCS survivors and to have the support of my family (at long-last). I ended up primarily with neuro-cognitive issues from these ongoing multiple chemical exposures combined with unmanageable levels of emotional distress from ordinary life dysfunctions and poor nutrition common to suburban lifestyles back then. I was misdiagnosed in 1979 and only figured out MY TRUTH about 6 years ago with the help of the Internet and meeting a friend in person whose been in a decades-long struggle with MCS and Chronic Lyme including extensive testing by experts and a wealth of research and perspective from pre-internet through the present online. I just wanted to share here briefly how incredibly powerful and beautiful you and your writing are! I look forward to keeping in touch if I may. I’ve experienced many devastating losses of relationships, education and career opportunities like so many of us MCS’ers. Hearing your incredibly meaningful, musical and magical prose of profound resonance and deep soulful significance to us who “know” and can relate personally is just such a gift. I will be reading more and more as I explore your online offerings here that are already giving me inspiration and that I aim to borrow as a way to light my own path to hope! Thank you so very much! You are such a sweet gentle living angel of love and graciousness. I feel so much less alone knowing you!I don’t read much for “pleasure” ever my since my “formal” public education ended with a few years of college in 1987 had been so un-inspiring from being forced to read and regurgitate everything just to memorize or dissect it so I guess I’ve read what amounts to an overview of famous authors and poets back in those bleak years of my life. I’ve never read ANYTHING more eloquent, touching and from the heart as your writing. You have a very unique talent with words. I will enjoy reading everything you write! All my love and best healing wishes, Jeanne
I am over whelmed and I am so sorry for your struggle to live as I too live like this multiple chemical sensitivities food allergies..( I can only tolerate 3 foods and water, Environmental illness, parasite and yeast infection with leaky gut and with 2 heart attacks and damaged heart now from a 10 hour surgery that went wrong and damaged my heart .I can hardly breathe and heart stops and then palpitates wildly every day…cant take anything to help and so many other serious health issues…living in one room for 18 years and no family ..all passed now ..very alone..I am praying for your recovery and for all of the people who are suffering ..I have so many other health challenges daily to cope with . I was also told about 5 weeks ago by a doctor that i am slowly dying…no help…so I am praying hard for all of us…a big vertual hug to you and hang in there …maybe a miracle can happen for you. Never give up ! I am not…
Ameila, you are a strong, Courageous, Beautiful Young Woman and I can’t thank you enough for sharing your story. I am also so very glad I happened upon your story by accident, as you have given me “Validation”. Yes, I have been living with MCS for the past 10 years. I didn’t know what it was either until my Allergist (my Allergies that were only a nuisance during the Spring suddenly became haywire and I was testing allergic to everything! The Severe Allergies happened at the same time the MCS happened….although I did not connect the two at that time…) happened to give me a handout pamphlet one day in his office about MCS. He told me the National Allergy Association does not recognize this as an allergy, however many allergy patients seem to have it, and that there was no cure. He told me I would have to live this way for the rest of my Life. Even though that seemed like a death sentence, I was overjoyed at actually finally KNOWING what the problem was. You and I “both know” how much VALIDATION MEANS. My journey was also doctor to doctor, prescribed pills, or pushed away saying “we can’t find anything physically wrong with you” or you are depressed, here are some anti-depressant pills….all the while I am losing my ability to swallow solid foods and I have gone from 130 lbs to 97 lbs, and continue to lose weight and don’t know why? I suffered with severe dry mouth for years (no saliva to even swallow!) and was in and out of the ER, drinking 4-5 bottles of water trying to get moisture into my mouth, and no solutions from the ER. (I didn’t know it at the time, but being around and exposed to strong smells such as perfume, cleaning chemicals, etc., was the cause of my dry mouth and breathing problems). I went from choking on chicken and rice, to choking on crackers in my tomato soup, to finally not being able to swallow anything. All tests I had showed nothing wrong? I went almost $20,000 in debt, going from doctor to doctor, and the very last doctor I saw was my Allergist. They could not even perform the usual allergy test on me due to I reacted almost immediately. That, was when I found out about MCS. There are no doctors in my State to diagnose me, and none near that I can travel to so a diagnosis is out. But from reading your story and the stories of others, and having to do ALL of the Research on this by myself….I know this is what I have. I believe mine was also caused by Pesticides. For 18 years our house was sprayed inside (and outside) one time every 3 months (because that is what we were told by the Pest Control Co. that we needed to be sprayed that often.) The only “pest” we had was spiders. Every room was carpeted in our house (except the kitchen and bathrooms) Can you imagine that pesticide just soaking into our carpets and over time creating a Toxic Soup environment inside my home? I rarely opened my windows or aired out my house because I had allergies, and with allergies, you are told to keep the windows and doors CLOSED due to pollen, etc. My family did not believe me, my own husband of almost 15 years at that time even told me “it was all in my head”….I gradually kept reacting to perfume at the work place and air fresheners, new construction and paint, to the point of if someone sprayed perfume or air freshener nearby, I would run from the room (outside) coughing and struggling to breathe. This caused so many problems at work, as most people do not like being told not to wear perfume, etc. I can’t say that I blame them….eventually, I could not work in a public place due to reacting so much (and employers also don’t like you to wear a mask if you are a Receptionist or at the front desk!). It was awful, horrible, and I felt like some sort of odd ball, outcast. I could no longer go out to eat with my husband at a restaurant (due to the smells and I could no longer swallow solid food…) I could not go to a public movie theater….I could not go in most stores due to the smells. I could smell the laundry aisle in the grocery store about 6 aisles away! I could smell a wood burning fire place (inside of someone elses home!) that was at the end of the street! I could not go outside onto my front porch or back patio, when my neighbors would do laundry. I would have to wait hours for the smell to go away, before venturing outside just to sit on the porch. It was really bad when people came to our house with perfumed or scented clothing from laundry detergents / dryer sheets. I would have to leave the room, and could not go into the room THEY were in, until the next day. (It would have to be aired out, etc.) We had to get rid of some furniture (not sure if it was the glues or the press board / mdf) but it bothered me and I could not go into that room. Pulled up all of the carpets in the house, etc. I have not yet reacted to the computers / electrical which I feel your pain on that….I am so very sorry that happened to you. I rely on my computer to work from home – – it is the only way I can support myself. If I developed a sensitivity to that, I would be done. That is the only thing I have. I am in my house 24/7 except once every 2 weeks I have to venture out to get my allergy shot. If I don’t run into too much perfume on my outing or road smells, I am okay. If I do (and I have on many occasions….) I am usually sick for 1-3 days after. The MAIN VALIDATION FOR ME in your story, was not being able to eat. I have survived on pureed, watered down foods for the past 6 years also and you are the FIRST PERSON in all of the research I have done on MCS and other living with that, that has mentioned that!!! I have always thought it was somehow connected to the Allergies / MCS, but of course there isn’t anyone in the medical field that will help me with that. I eat the same thing every, single, day. I don’t rotate as I don’t have much that I can choose from. (I tried many other things, and it either caused a tingling sensation in my lips or throat, or generally made me feel sick….so I stuck with what I could do). My breakfast is low sodium chicken broth with a little filtered water added. (I also have to filter my shower water and drinking water….) Lunch is a can of Healthy Request Campbell’s Cream of Chicken Soup and a can of filtered water mixed in with that – – then, I have to Puree that and strain it, then I can eat it with a spoon. I have one small 1st stage baby food, sweet potato, and one small 1st stage baby food green beans. I can not eat the baby food alone, but I can mix it on the spoon with the soup, and eat it that way. (otherwise, it is too thick to swallow) I eat ice cream (no eggs in the ice cream and as low sugar as I could find) vanilla, and for the past 6 years I have eaten about 3 cups of ice-cream per day, and never gained weight. However, it kept me from losing more weight and getting below 97 lbs. It also helped me with my bowel movements, as I am not getting any roughage in my meals. (I also have to brush my teeth about 4-5 x per day due to the sugar in the ice cream!). I will have a cup of ice cream drizzled with extra virgin olive oil (olive oil is a good fat and it tastes pretty darn good on the ice cream!) with my lunch. Dinner is Creamy Tomato soup that I mix with filtered water and I roast garlic in the oven drizzled with some olive oil, and I put one large clove of garlic in every can of tomato soup that I eat (So I get garlic every day). I have to puree the garlic tomato soup and then strain it “twice” for some reason. I will have a first stage baby food banana with that and another cup of ice cream with olive oil. This has been my diet for the past 6 years, and during the winter I will make a “VIT C / Anti-oxidant Home-made Soup” which has stew meat, onion, garlic, potatoes, vegetables (peas, corn, broccoli, carrots, potatoes, celery, etc.) with tomato paste and tomato sauce. After cooking this soup for hours, I will then have to puree it, and mix it with lots of filtered water to be able to drink it. I have to strain it and water it down quite a lot to be able to drink it, and at most, I have 1/2 cup of this pureed / strained soup (to get some vegetables and beef) and mix the other 1/2 with watered down tomato soup, and I can only drink it when it is not allergy season for some reason. I guess my throat is more irritated (post nasal drip, etc.) during the spring months. I will try to make it this summer as I desperately need the iron from the beef and the vitamins from the vegetables even though it is in liquid form. I have to tell you, I have actually THRIVED on this diet. I even had a full blood work up at my yearly physical and my doctor said it was amazing how well I was doing! My triglycerides and cholesterol were excellent in spite of eating ice cream every day and my heart attack ratio even went down by 3 pts which is outstanding. I was a little low in VIT D, and had to take some drops in my soup for that but that was it. I was healthy other than the sudden unexplained weight loss and the inability to eat solid foods and the MCS. I also have a “safe room” in my house stripped down and basically have lived within these walls for the past 6 years. It has been so lonely. I share your loneliness Amelia. I have a mockingbird that has been visiting me for the past 6 years. He just showed up one day after I became ill, and flys right up to me and lets me feed it from about 12 inches away. It will sometimes sit with me on the back porch for awhile (or until someone does laundry or cuts their yard or puts herbicide treatment on their yard, then I have to go inside). Pretty much the only friend I have had the past 6 years, and I find that to be a blessing. ♥ The MCS has ruined my marriage, however, I am trapped as I can not go anywhere and not sure if I can fully support myself as I can no longer work in public. Trying to see if I have the strength to work 2 jobs from home instead of 1 so I can support myself as I have a feeling I will be alone for the rest of my life. I am also planning on saving up to build a “safe home” for myself. I am looking at building a Geodesic Dome Home! I have been researching low and no VOC materials for the past 4 1/2 years and have quite a lot of information I would be happy to share with anyone that needs it. (Everything from interior to exterior and furniture). I have discovered instead of paint on my walls I can use tile and also I found an inert decorative tin that you can use on your ceiling and the walls! (Think of the decorative Tin ceilings in old Victorian homes…) It has been baked / powder coated and is totally inert. I would not put it in the bathroom where water is used, (will use tile there and might have to paint the ceiling in the bathroom and just wait until it off-gasses for months later….) but will for sure use it as it comes in a variety of stamped patterns and colors. I thought I would share that with anyone looking to change their wall or ceiling color and can’t be around paint. My bed and just about everything inside will be patio furniture and glass or stainless steel (without the chemical glaze). I have even found a recipe for tile grout that has to be hand-mixed but has been around for the past 2,000 years. A little more work for the tile setter, but healthy. Plus, once you position the tile, it is NOT coming off! I will continue to do research as I need a healthy place to live, but also one that I can afford to build, and the Geodesic Dome Home fits that bill. Also, the owner of the Dome Company I am going to use is into Green Living also and eliminating chemicals. http://www.naturalspacesdomes.com
Amelia, I apologize for taking up so much room on your blog, but I am so thankful for YOU and for putting your story out there. Again, validation for me, and knowing that you CAN remain Positive and continue to live with MCS as you have proven in your story, and as I will continue to prove living my life. We can make this a life worth living, and anytime you need someone to talk to, please don’t hesitate to talk to me. It helps to talk to someone that is going through the same thing that you are….you are NOT CRAZY. And we can do more than just merely SURVIVE….NEVER GIVE UP…NEVER STOP SMILING…Stay POSITIVE. For anyone, my email is: livelaughlovepeace@outlook.com
God Bless you Amelia for being brave and strong and sharing your story….Take care of yourself! ♥
Angela