Diana
I was a registered nurse working in the OR, wife, mother of three and loved life my job, people, golfing, curling and then the sky fell in on my life.
I developed Fibromyalgia in '92. I went from a very active gal to one in extreme pain and couldn't walk out my door. I was off on long term disability.
In '94 I started reacting to everything. I had spent many a nights in ICU, min. I found out the hospital was as bad a place as anywhere. I went back to work in '95 on a modified work plan and in December I thought I had it licked then things started to accumulate in my system and I crashed.
In February '96 I was forced to apply for permanent disability, which I had no problem receiving. My rehab nurse told me sensitivities were a symptom of Fibro. I started the list of doctors with many of them disbelieving that perfumes and chemicals could make me swell. Who in their right mind would make this up? And as if I could make myself do this. After a severe reaction and three Epipens, morphine and nitro, I was referred to Dr. Foley in Toronto, who referred me to Dr. MacLennon, an Environmental Allergist who saved my life. I went through extensive testing for 2 1/2 years each week for 2-3 days at our own expense as he wasn't covered by OHIP and the traditional allergists didn't recognize them. My travel grant was even taken away for the same reason.
Our whole life changed. I was reacting to everything I ate and breathed. I was at one time only eating canned salmon, broccoli, rice and water without reactions. We traveled to Toronto to buy organic foods and foods I'd never eaten from the BIG Carrot since I wouldn't react to them. I lost many best friends because they wouldn't stop wearing scents and didn't believe they would make me swell.
We moved from our home of 20 years to Manitoulin Island as it has no major industry, clean air, our own water supply (no fluoride), low exhaust fumes, limited weed man and no dryers blowing out fabric softeners. I had to wear a mask in my old neighbourhood when I walked. My husband changed jobs. We lost our social life, friends, doctor and the list goes on. I became suicidal and severely depressed. No wonder when your job, home, friends and social life are taken away from you.
I lost my confidence in driving. Hadn't driven more than five minutes away from my home since '96. Had too many reactions from exhaust fumes from the car in front of smog or something I didn't even know. I never travel on public transportation. Traveling is a nightmare. At times it has taken us 10 motels to find one that smells out ok. I can't travel in a new vehicle. I fly now because I have oxygen and charcoal masks on board to last me the whole flight, for which we pay $150 one way.
I have been on three injections since '97 each week that isn't covered. I go to a Massage Therapist weekly and Acupuncturist to manage my Fibro. I have had to give up church because my parishioners won't refrain from wearing scents for one hour once a week. I've had to leave many restaurants, meetings, functions, offices due to exposures. Go were there is new carpet. This life is so complex most have no idea what one with MCS has to endure.
This by no means has been easy on my husband and children. I thought I was doing great until I traveled out West to visit my children. The place we stayed in used strong detergent and fabric softeners. Then we went on to friends in Phoenix and ran into the same problem. I came home chemically overloaded and started reacting big time. And once this happens your are overly sensitive. I know I'm scared again and almost back to where I was many years ago. I know I have been lax at times just pretending I'm normal.
I'm driving now by myself as far as 1 1/2 hours away from my home, running into more exposures on the way. I don't leave in time when I smell something, thinking this time I'll be OK. Well, each exposure adds up and now I'm paying for it. This is the scariest thing in my life.
As an OR nurse I have seen it all and nothing compares to this. I'm a nervous wreck, panicking, crying, scared to death to eat or drink. I have a new family doctor that isn't up on Chemical Sensitivities and doesn't know the severity of this. She just keeps prescribing medications which just put more chemicals in my system which is already overloaded.
I'm staying at home so I will avoid any more exposures. I'm on oxygen three hours twice a day and more if needed. I'm taking a salts mixture three times, eating only one food at a time to see if I react. I wish some doctors, politicians, drug companies, news media would live our life for a week. When and how can we make people know that we are living in a chemical world and getting worse by the day? Why does absolutely everything have to have a scent? We can plug it in, spray it here, put it in our dryers, on light bulbs, in our toilet paper dispenser, it's in public washrooms, motels, and the list goes on and on. How do we educate people about this? Why are allergies, Alzheimers, Parkinsons, MS, SIDS on the rise? I would give my everything to be able to nurse again, walk into a store without worrying, golf, travel worry free, drive forever, eat anything anywhere and this list can go on and on. I know I'm one of many reading the MCS site.
Hopefully soon there is help on our way and understanding and compassion towards us.
Thank you for your time,
Diane Chambers


