Judith Spence, RN
I am the CEO of the Environmental Illness Society of Canada (EISC), a leading national stakeholder charity representing the interests of Canadians with multiple chemical sensitivity, chronic fatigue syndrome and fibromyalgia
I am the CEO of the Environmental Illness Society of Canada (EISC), a leading national stakeholder charity representing the interests of Canadians with multiple chemical sensitivity, chronic fatigue syndrome and fibromyalgia. It is our mission to raise awareness about these illnesses and to educate both the public and the medical profession about them. There is urgency to this mission. People with environmental illness are prone to iatrogenic (physician-induced) illness. To address this problem, the EISC developed a safe hospitalization program with a local area hospital a number of years ago.
At the time, the guidelines for safe hospitalization for patients with environmental illness were on every nursing station. The Inservice Education Department would be called to the floor to educate and support staff when a patient with environmental illness was admitted. Alternative pharmacies would be called upon to provide specifically compounded medicines and the EISC would be called in to support both staff and patient, when necessary.
Everything changed when there was an amalgamation of hospitals. This innovative program was lost.
Last year I was involved in a car accident. I was lucky. I survived my car being rammed at 60 kilometres per hour. I was glad to realize that nothing was broken. Sure, I knew that there were sprains and strains and there might be neurological injury, but I was conscious and that was a blessing because I would need to direct my care from the moment of impact.
I called 911 and explained to the operator that I suffer from multiple chemical sensitivity (MCS) and I required a diesel-free ambulance and scent-free attendants. But the chemical exposures began almost immediately. Witnesses to the accident offered help and the scented product someone was wearing immediately triggered asthma and headache.
The triggers one often experiences at the scene of an accident are from scented products, auto exhaust fumes, volatile organic compounds (petroleum based) that may be leaking from damaged vehicles, particular local irritants in the vicinity of the accident and chemicals coming off PVC tubes and masks that deliver oxygen. I reacted to auto exhaust from the ambulance left running beside my car and right next to my stretcher.
I reacted to diesel exhaust from the fire truck that was at the accident scene to douse the smoldering engines and I was severely triggered by the strong aftershave of the ambulance attendant that had been assigned to get a neck brace on me.
I was thankful I was conscious and able to speak.
The firefighters were instructed to shut off their engine and the ambulance attendants turned on a special exhaust fan to evacuate the exhaust fumes and chemicals from the ambulance. My reactions were progressively getting worse, yet none of the basic emergency treatments for multiple chemical sensitivity reactions was initiated. (Emergency crews in Canada are not at all aware of the illness and about factors that exacerbate the illness. They are clueless about appropriate emergency interventions they should begin at the scene of an accident. I had managed to minimize my exposures, but a patient in shock can do only so much.)
I developed Parkinson tremors that progressed to very pronounced shaking. My brain was inflamed. The pain was explosive (it was not from the crash but from chemical exposures caused by the emergency crews). In California, at least one police department is trained in MCS management. They know what to watch out for and how to minimize exposures that they would otherwise cause. This needs to become part of the curriculum for all medical and ancillary emergency staff.
When in hospital, my stretcher was parked near a cleaning mop and pail, which left the odours of the industrial cleaners filling the air and triggered a new round of reactions. By the time I was taken into the trauma unit, I was experiencing continuous MCS reactions. Once I was secured, the nursing staff left and the medical resident came to examine me. He wore a strong aftershave and my head began exploding. I had difficulty speaking.
He was satisfied when I whispered that my shaking was a result of my chemical sensitivity reactions and off he went to order X-rays. In the wake of his aftershave I lost consciousness. I was no longer able to speak or to call out for help. Being strapped to a board and immobilized, unable to press a bell and unable to call out because I was having a seizure, was a harrowing experience. Prior to a seizure, I go into a stupor. I am generally aware of what is happening but cannot call out or take evasive action. My muscles become flaccid. In essence I'm a bystander to my own reactions. I am also aware that the end result of this reaction will be my blacking out and losing consciousness.
When I came to I was all alone in the cubicle. My husband arrived shortly afterwards with neutralizing serums, bicarbonate of soda and sugar. Within minutes my reactions began to subside. I was clear headed and the degree of my reactivity was almost back to normal. Every time the doctor came back into my cubicle he triggered a new round of tremors and numbness in my fingers. When he left we neutralized my reactions.
I survived the car crash. Even more importantly, I survived the iatrogenic challenges that an unplanned trip to hospital causes persons like me. But the issue here is that medical professionals and emergency services must be educated about environmental illness.
The EISC has developed a booklet for doctors but we have yet to find funding to print and distribute them. Ironically, at the time of my car accident, we were lobbying the minister of health not to pull out as a partner in the First National Symposium on MCS, CFS, FM: Environmentally Triggered and Emerging Illnesses. That conference was to be the turning point in medical awareness about environmental illness. The Canadian medical community was about to learn the signs and symptoms and appropriate and effective medical interventions that are available in cases of environmental illness. But after a year of development and five months away from the conference, the minister of health withdrew as a Conference partner. This ended the Conference. It also assured that the 4.5 million Canadians with environmental illness will remain poorly served by the medical institutions of this country for many years to come.
The Society can be reached at 536 Dovercourt Avenue, Ottawa, ON K2A 0T9. Tel: (613) 728-9493.