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Living With MCS: Coping

Symptoms    Family Living    The Life I Lost    Coping    Being Accommodated    Reflections   

In my home I depend on carbon and HEPA filters. We have removed any carpeting. I have begun trying to use a laptop encased in aluminum and glass which John made for me. It is vented to the outside with a hose and a fan. This carries the fumes outside and removes any reactions to using the equipment. It has opened up a form of communication for me. This is a wonderful connection as this is an illness marked by isolation and loneliness.

My bedding is all cotton. I use a special mattresses untreated (as laws require without doctor's notes) with fire retardants. The mattress that is recommended for my illness, my partner finds uncomfortable and prefers another room at night. My diet is strictly organic at this time, so as not to upset my system with potential pesticide complications.

Iím unable to breathe unfiltered indoor air currently without respiratory distress at some level. I'm living homebound missing all social contact to avoid painful reactions. I constantly am unable to be at any family gatherings, movies, dinners, musicals, concerts, school events, bar mitzvahs, funerals and all social gatherings.

I was under the impression I would heal that summer of 2004. But the isolation and the disability continued. I was home for the fall 2004 school year, crying as I watched the students walk on to school.

My partner works for the school district and worked most of the summer in the space that made me ill. The books were not removed, neither were all of the ceiling tiles, nor the particleboard shelving. These shelves, which buckled from moisture damage, were bolted back into form. When John came home we'd be coping with serious cross-contamination issues. (John would eventually move out.)

He has built a series of specially covered metal stud doors to come through, discard his clothes, shower and then enter my safe space, where I have a HEPA filter running. When I leave this safe space I often need a HEPA mask if someone else has been active in the space.

Items as everyday as grocery bags clearly stored in moldy areas etc, start me coughing and I get dizzy and headaches immediately upon exposure. I have made many changes to my life. One important addition is a clothesline outside my door. Items hang here constantly until they are no longer triggers for me. For example I hang garbage bags in the sun before I use them in my trash. I leave my groceries at my door and bring them in a bit at a time. I often must rebag carrots or meats that I buy, as the packaging is offensive from either picked up fragrances or molds, or simply offgassing itís own chemical packaging. My postman puts my mail onto my unlocked enclosed porch and I leave it there until the new paper product smells dissipate before I bring them into my home. If I need them right away, I use my respirator and place them into sheet protectors until they are old enough not to be problematic.

When I wake up in the morning, if I have not had chemical exposure the day before, I wake rested and fine. If I have, I may continue to have extreme fatigue and have a difficult time getting up.

When the area surrounding my house is toxic with laundry exhaust, I cannot open the windows. This is sad on really nice days. So on those days, I try to walk to the local graveyard, as its a high altitude and the air is usually good there. However, since the path there is a bus route, I usually go between 5 or 6 am for excersice and then stay home. Now I have a treadmill in my home as I find the summer to be far more exposure prone than the winter air. There can be many days in a row that I do not venture out.

Heading to the Grave yard for good air, trying to avoid bus fumes Blocking Passing Bus Fumes with my respirator

When they are grading and oiling the roads, there can be much truck traffic on this route from my house as the town keeps sand piles near this area. I remain home or drive to lakes and wooded areas such as the local neversink reservoir to walk. In the past, though, and in good weather I can meet friends on walks. The outside air dissipates any chemical triggers on them. Facing the loss of health, social life, career, family contacts etc, was overwhelming and it was in outdoor spaces I first had therapy. I found a therapist willing to meet me outside. He agreed to use my products. Being fragrance free goes well beyond simply not using perfume or aftershaves.

When I leave my house I always have my respirator since I leave behind my safe chemical-free zone. The filters are outfitted with carbon and help filters. I now have a permanent bump in my nose from its two-year use at this point. I tie up and cover my hair if I know Iím heading to the bank, or post office. These two spaces prove very difficult for me to enter. I leave ski caps in my car for this protection. Then I bag the hats and hang them at home on my clothesline. These rotate constantly. This works really well. Once I leave a space and take off my mask I then detect my own exposed hair or clothing. Being able to get home quickly is important.

I have changed to a pharmacy with an open drive-up window to cut out having to enter there. I have clothing in my car to change into and bag when I come out, if I have been severely exposed by waiting in a long line for example. Sometimes I simply leave if I see a line.

My car has a filter. My car was heavily off gassed with heaters for several months. I try not to have anyone else in it. Sometimes I have to bring my daughter home when others cannot. I have to wear my respirator and once she gets out I drive around with windows open blasting the air, or if good weather, I run a fan on the driveway from a stand through the doors to blow out the chemicals sheís transported. If neighbors are doing laundry at the time however, this is not a workable option, for that smell is as bad.

There is a local gas station where the owner knows that I can no longer pump my gas, and comes right out to do it for me. When I travel I must wait a long time sometimes for an attendant to be free enough to come out to pump my gas. Even though I have handicap plates some say they cannot do it for me and I have to leave their store and drive on to find someone else. At times sympathetic customers will pump my gas for me. Even if I have my daughter with me, I cannot afford to have her do it and pick up the smells and continue on in my presence.

I feel chemicals thousands of times greater than most people. Upon exposure I grow faint, have chest pains, burning eyes, weakness, intense fatigue, joint pains, inflammation and throat closing. Much of my day is spent trying to stay well: redoing the laundry, preparing to go out, avoiding cigarettes, hot tar roads, people using fragrances or pesticides. My neighbor cleaning out his kitty litter really upset me last month. I never know what others may be exposing me too, all involuntary exposures that harm me. Much time is spent recovering from going out, such as hanging out bags from the store on a line outside to get the molds and fragrances off them for use later. The health food store I travel to in New Paltz keeps incense near their produce- though Iíve complained many times about it. I must rebag what I bring back Ė as packaging transports the chemical smells. I wash fruits extensively. My water use from constant laundry has more than tripled and my electric bill has done the same due to the constant running of air filters.

All my products are vegetable based and not chemical. I use baking soda, non-chemical cleaners and vinegars for cleaning. I use special products for personal care.

I have one neighbor that uses my laundry products so that when his dryer exhausts onto my driveway Iím not made ill. The other neighbor refuses to use my products, not liking that they donít ĒsmellĒ. When they do laundry, I must close all my windows quickly or I will be sick for days from the trapped fabric softener and dryer sheets chemicals. I use duct tape on cracks that allow in the fragrances. Any bit will cause burning and dizziness. These chemicals in laundry products are poison to me. I have fans all over the house exhausting the air should my daughter walk quickly by to get to the shower.

When I was first sick I had a safe box to trap computer smells and exhaust them out an open window to which the box was attached. This box worked for reading books also. The box enabled me to use a computer for short spurts. I can tolerate my laptop now without the box, but new papers can still be problematic, until they are old enough.

Advanced planning and cooperation can render successful unpainful moments of being in company. Recently friends from high school insisted on visiting since I could not go to Westchester for a reunion. They were willing to wash the clothes they planned to wear many times in hot water or simply baking soda. They used non-fragrant products for several weeks leading up to the visit. I wrote to my neighbors asking please that they not do laundry nor run lawnmowers or idling engines that day, so that I could be outside with these friends. Also recently, my sister sent out flyers to all attending my nephews outdoor graduation party, asking them to arrive fragrance-free, as I would be attending.

Employers don't seem to understand or are unwilling to cope with the conditions needed to employ someone so greatly affected by everyday products. Upon exposure Iím simply too tired to be on demand. While I remain unaccommodated, and awaiting constant appeals to my wins, I continue without salary. Furthermore I continue to pay over 1,200.00 monthly to cover my three children and myself with health coverage. I contacted Vesid , but they agreed that new skills was not what I needed, but controls on the space where Iím called upon to use the skills. That help they couldnít supply. The only example of home-based work they could supply in the past year was that of a woman doing medical billing from home and that is no longer an option for her either due to new regulations.

After court or medical appointments or long ventures out with exposures I came home to change, shower and sleep for hours due to exposures and extreme fatigue. The court was a small space with dry cleaned suits and fragrant waiting rooms. I wish I could have testified outside in a park with clean air, and not have tried to speak with the respirator. When testifying words are very important.


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