My Mom jokes about “Helpful Hints from Heather.” (There was a column way back when called “Hints from Heloise” for housewives.) These are things I picked up along the way that I don’t see in books, with help from Green Canaries Yahoo Group and a private MCS group on facebook. Other hints, especially about money, come from people who work in domestic violence shelters.
When asked what the single best purchase they made for their MCS, all answers were one of the four: air purifiers, water filteration, safe bedding, and activated carbon filter masks. If you are wondering where to start, start with these big four.
Remember you may react to some air purifier filters, activated carbon and bedding, so ask for samples first.
If you are receiving social services like SSI and someone is including you in their will, they could put you in a vulnerable place. You may lose all those benefits (Medicaid, food stamps, etc) you fought so hard to get when you get $4,000 from your Aunt. Make sure anyone leaving you anything sees a lawyer about how to do this in a way that does not risk your security. Having the money placed in a trust that buys you “gifts” with the money seems to be the way to go. Each state has its own rules. All parents of a child with disabilities should do this.
When shopping, be prepared to return everything if necessary. Check return policies before buying. Test all clothing/textiles one at a time for reactions. You cannot send things back if they were washed.
If you cannot write with ink, try metal or hard plastic mechanical pencils.
If you have a doctor who will vouch you have MCS, you can ask for your government subsidized housing to have an extra bedroom for offgassing as an accommodation.
Have your escape route planned and an emergency bag or box (bug out bag) packed. If suddenly for some reason your home becomes toxic, know where you will go and have what you need ready. I have extra medication, mask, trisalts, extra B12 methyl, MCS letter from my doctor, my medical information, lip balm, change of underwear, socks, throat lozenges, hat, sweater, gloves, electronic charger from the lighter for the “emergency only” cell phone and my tablet. In the parking lot of a library we can check and send email that way, plus there’s books, a camera, my address book, etc. The car already has the travel bathroom in it. Know of one place where the air is usually tolerable. We have a state park.
Can’t flee? To pay for an oxygen machine your insurance will probably want a cluster or migraine diagnosis. Check “Resources” for where to buy a porcelain mask if the plastic makes you sick.
Sleeping bag: Two organic cotton and wool exercise mats from Heart of Vermont, one below, one above, is very warm. Add a metal camping cot with springs so you are off the cold ground and you may be rather comfortable. (The earth sucks the heat from your body.) The mats also make great body pillows.
Audio record appointments with any doctors, healers, lawyers, insurance agents and social service persons since you might be so out of it from their toxic office, when you get back to the nest you may have forgotten everything. A paramedic told me to do this. I have a 20 year old tape recorder I used in college for recording notes. We actually found a place selling cassette tapes. Be very suspicious of anyone who has a problem with you taping the appointment.
Vote by mail.
Some appliances seem fine until you turn them on. Then the burning tire smell happens. If possible, have a product on before you decide to buy it. Turn on and leave new TVs, computers, vacuum cleaners, and other electronics running in a safe, off gassing space for several hours a day. (It is recommended that you use an electrical timer to switch them on and off.) Many of them will become more tolerable after weeks or months of doing this. You may try buying used but make sure you can return it, as it may have smoke or cleaning products poison. (Electronic parts from overseas are sprayed with pesticides. You need those to burn off. Made in America doesn’t tell you where the parts are from.)
Accept the fact that a lot of money will be wasted as you search for what works. There will be many mistakes. It’s OK. Well, it is not OK, because it makes more trouble for you. But you are OK. It’s not your fault. How can you know for sure if something is safe? Self compassion. One woman calls MCS Wasted Money Disease. Keep receipts and try to return what you can.
Run from anyone claiming to have a cure no matter how desperate you are. If there was a cure, we’d all know.
When searching for housing, home health aides (“cleaning and cooking and errands”), etc, put flyers in or call your local food co-op, natural health center, organic farm, farmers’ market, home schooling groups, local environmental groups, etc. These are where people who may be wiser than others about petrochemicals and have changed their own lifestyles congregate. (Due to greenwashing and some people’s fanatical obsessions about one thing, you may still have to educate them.)
Common barriers against fragrance and other chemicals used to make a safe nest: Denny foil, AstroFoil insulation, ShutTape, aluminum foil, clear plastic tarps, and Tyvek sheeting. (Test for yourself!!!)
Have a major purchase to make from a national retailer? Get a change of address package at the US Post Office. In it is all sorts of coupons for things new home owners and builders might need.
Get a Lyme test. Several. Lyme tests are only less than 70% accurate and the one lab in the US that is good doesn’t take any insurance aside from Medicare. Most of my friends with fibromyalgia have had Lyme for years! I had it and babesiosis, undiagnosed, for seven years, including when I first started this website when left to die, unable to walk, with no heat, no change of clothes, no toilet, no help, in a 22 degree F field for 6 weeks.
Therapy may be helpful, not because this is a psychiatric illness (all of which are physical, too, although the “chemical imbalance” theory still has yet to be proven no matter what way BigPharma spins it), but because coping skills are helpful. Learning to distract, self-sooth, breathe in ways to counteract stress, relax muscle groups, handle cruel people, and having someone to witness your mourning process if often important. Phone or Skype peer counselling and some books or DVDs can fill this void. (See Resources.) Also the majority of people with disabilities have a depression and/or diagnosis. It’s depressing and anxiety provoking to be disabled in an ableist society.
Because exposure often causes short term memory loss, I made labels for every drawer and cupboard. It helps with the dazed wandering and guides anyone helping me. First aid kit, linens, silverware, snacks; easy to find when I am dizzy and have a massive headache.
Tyvek coveralls help protect me from other people’s chemical poisons somewhat. Dupont Tyvek Coveralls 1414 I like. I got them from PK Safety; now Amazon has them. Although not anywhere near perfect, this what home health and repair persons wear to my home. They are reminded the day before to not wear perfume, use mouth wash or chew gum.
Doctor shopping is scary until you realize something: Many people with MCS have no doctor and of those who do, most don’t have one that has done anything that helped their MCS symptoms. Yet they are alive. The doctor is secondary to air filters and safe bedding. If you don’t have any other serious medical conditions, don’t freak out about not having a doctor who knows about MCS.
Find ways to get others to do in person shopping for you. They can go to the grocery store, the pharmacy, the post office, library and other toxic sites. Ask your friends to tell you when they are going shopping. Make a list with brand names and sizes. You can have a saved list on your computer and email the ones you want at the time to the shopper. No one knows what you want when you write “peanut butter.” Specify.
When I was told this by others, I didn’t believe them, but it is true: You can get better. It took safer housing, air and water purifiers, a safe mattress, an accurate Lyme disease test, a Metabolic Functioning Test, DNA test, supplements doctors suggested based on test results and my sensitivities), never leaving the house without a mask, changing my diet to less than 10 foods as my intestinal health improved, finding my new zillion food allergies, B12 methyl shots, dry brushing, O2, tons of prayer and devotion to my ancestral faith, peer counseling, self compassion meditation, art, demanding home health obey the ADA, a nightmare of bad doctors and terrible (anti)social services plus a lot of rewarding Actionist community service. And my case is unusual because of having two serious, possibly fatal tickbourne diseases that weren’t diagnosed for years.
My mother can wear some non-organic clothing, go to one restaurant, the health food stores, walk around town, pop into a few shops, chat with friends and not need her mask very often. She’s never seen a doctor for MCS. She takes no supplements. Our home is a nontoxic sanctuary and she eats well. Her reactions are less severe, far less common and happen much less.
If going somewhere toxic like the dentist, wearing Tyvek overalls can protect your clothing.
Stuck in a year-long gym membership you cannot use? Have a doctor write a note explaining you cannot attend the gym. It broke my contract. If a doctor can get you out of a gym membership, explaining to your landlord that you must break your lease is often easier. Saying you need to move to be closer to health services works well.
Call a store in advance and ask if they have what you need. If they do, ask them to have it ready at the check out for you because you are disabled. Small businesses often will go far beyond the call of duty to keep loyal customers. Make sure they know that you appreciate them.
Use ATMs and online banking to avoid having to go into the bank or be near ink. Once you have made your car safe, even opening the window in the drive thru lane at the bank can ruin your hard work, especially if others are running their engines. Money you have probably noticed carries years of toxic stuff with it, which is why I wear a mask and gloves when handling it, and keep it in a metal box.
When dealing with any social service, find the one helpful person, get what you need and get out asap. This was great advice given to me by a psychologist. She said otherwise I would go crazy. The system does not work, so if you expect it to, you will have a terrible time. Having worked in nonprofits and knowing what an underfunded, understaffed mess they usually are, I can vouch for this from being on the other side as the very overworked, very underpaid service provider who feels guilty she cannot help anyone but also wishes they’d stop screaming at her. Many started out young and idealistic and got in trouble many times for helping “too much” and making people “want” to use the “system” again. Many low level case manager types are “phoning it in” while getting an online Masters. Many are bitter and hate humans now. A MSW gets you the lowest paying job of any masters. Government employees are waiting for their own lay off. Nonprofits depend usually on government grants, so if the governmental organizations are broke, so are they. No Rockefeller is bankrolling your food shelf. It is well known in nonprofit land that nonprofits have two kinds of staff: dedicated hard working caring people and people who could not get a job elsewhere. I am not trying to make excuses for their bad behavior, but just hoping you’ll see it is not personal.
It is easier to hand someone a list of what works for you than what doesn’t. The list will be much shorter. If your family cannot understand that unscented often means fragranced with a masking chemical or says “so and so can handle beeswax candles” your list is a short cut.
People like hikers better than the homeless. The main difference is accessories. Make a walking staff and sew a few patches from Canada and Switzerland on your pack and ta da, you are now a hiker. Hikers actually have their own community.
To ease the panic from cognitive dysfunction and memory loss when intoxicated, I have a list in the car of how we “do” the car. Rule lists help. Here is what is on the car one. Air is recirculated. (No outside air in our car! Who knows where it’s been!) Air Purifier is on. Windows are up. When the car stops, we wait 2 minutes for the exhaust to blow away before opening the door. All new items, paper/ink, outside contaminated clothing, etc is in a clean metal garbage can. There is a list on my apartment’s hall to remind us of safety standards. Groceries out of stinky bags and brought in with an old milk crate. Receipts in a cheap metal box. Mail carried in a small tool box to the “ink room.” Take shower and put on new clothing. Rest, drink water, and recuperate before doing anything else.
Cannot be near the medical or social service forms you have to fill out because the ink is so toxic? Have someone you trust fill them out while on the phone with you. I later read it in a plastic page protector to make sure the information is correct. Wearing my mask and gloves outside of my nest, I sign where I need to sign. If you have social services they have to do this according to the ADA. Be nice and succinct when asking for this accommodation and mention the ADA only if they get difficult.
Anyone says you are doing things wrong, especially in a very lazy MCS group or a judgemental family member? You reply, “I am so glad you know a better way to do this, as I am exhausted. Thanks for volunteering. Whew, that’s a load off me! Thanks! So when will you have this solved?” They will be very very very silent. (I used this at work a lot. The 20% of the people doing 80% of the work don’t need other people’s nonsense.)
Save all receipts that have anything to do with your health. You may need them for taxes and other possibilities. This includes organic food if you have a letter from a doctor saying you need to eat organic only.
Know of one public bathroom that does not make you very sick. Mine was the co-op’s.
A friend who worked in a homeless shelter told me about the illegal advice they gave people on the verge of losing everything, like turn all your cash into silver dollars. No one can trace that and you have a fall back fund. When you apply for Disability you cannot work, yet the process may take 3 years and you cannot have any money. You do get to have your home and car. (Ditto for bankruptcy last I heard.) What I have heard other people did: Buy staples in bulk before applying. Pay electric, phone, car insurance, etc months in advance. Get all records from every doctor you have ever seen for your health concerns to establish the problem is real and long term. Even tests that showed nothing show you put yourself through a lot for a real reason. With all that done, then quit your job and apply for disability that day. If you win, you’ll get benefits going back to the day you applied. Expect a rejection – almost everyone no matter what the disability has to appeal. The second time people usually win. It’s a strange system.
Some towns have Time Banks. When you join, you post something(s) you can do for an hour. I have astrology as mine. Other post what they can do. This was developed in part so people could get services without money. It is Ok to go hours into debt, as that means others have credit. I had records put on CDs, received great drumming lessons and a yoga class at my home. A hoarder I knew got her house semi-manageable with volunteers cleaning. If you need someone to get your groceries, give you Reiki or rake your yard, the Time Bank probably has someone who will do that. People also post free things, like glass supplement jars. If you are in an activist group, the group can join, and here are people who will do mailings, help at nonprofit events, play music at benefits, and pass out flyers. There is a membership fee, but you can do a couple hours work for the Time Bank. Even though you probably won’t have anyone coming to your home or go to theirs, when people join they mention if their home has stairs, pest and any smokers. A Time Bank is hit or miss. I have been in 3 and only one had anything I needed. Many people who start them badger their friends who are not really interested and forget they joined. The largest one I was in, with 300 members, was the least active.
I was one of those perfect credit freaks who never had a balance on her credit card and then I had to buy wacky luxuries like medication. On SSI my income is about $700 a month. My credit card payment was $65. 1/10th almost of my income was paying for past medical needs when I had current ones to cover. My lawyer said to make a copy of my social security income amount letter and send it with a letter asking to be written off as I obviously have no way to pay them. It’s been four years since I should have paid my payment and no one has called. They are not going to waste their money on lawyers for small fry.
As someone who has done animal rescue volunteer work, if homeless, please do not get an animal companion. I have seen permanently sick parrots who lived in cars being fed the wrong food, endless crusty punks with neglected dogs as fashion accessories, and people who illegally domesticated raptors like hawks and the raptors almost died from the wrong food. Unless you can take care of the animal totally reliant upon you, do not make them suffer with illness, starvation, and potential abuse. Some semi-homeless people can make the dog thing work if they have a few on again off again friends to rotate from home to home between, but with MCS you probably do not have that option.
If you dumpster dive, the key is to look like a normal person for the area who is between jobs. No political slogans on your clothing and no “funny hair cuts.” Wear thick soled boots – You don’t need to be stabbed in the foot. Wear gloves – You don’t need an infection. Do not lean in and have the lid crash down and kill you. A long poking device helps to see what bags are filled with what. Do NOT leave a mess and ruin it for the rest of us. Some employees when they find out about you might “accidentally” leave the day old food and other good items on top, clearly in view. Especially if they are your friends. For more info, read the “Art and Science of Dumpster Diving”.
If ink exposure makes you ill but you have one or two sheets you must read, have someone slide them into plastic page protectors and zipper freezer bags. It doesn’t help me 100%, but it is better. Yes, I break my no plastic rule sometimes. Or you can ask someone to scan things.
My TV remote is synthetic rubber. I hate it. By putting it in a zipper freezer bag I can use it again. The plastic hose on the mini-washer makes Mom sick. I wrapped it in aluminum foil. Warning: There is a concern that wrapping power cords in aluminum foil will make their EMFs stronger.
Ask offices to open windows and even if you can bring your own fan if outside air is better than inside when you have an appointment. One woman does this at the dentist’s.
Camping gear is a great place to look for house ware made of metal. Growing up off the grid and in tents, we used the greatest utensil ever: the spork.
I sometimes cannot touch synthetic fabric, plastic or paper treated with chlorine. I have gloves with me at all times, just like the mask. (This is where I do start to feel again like I am in a movie. Feeling like we were in a sci-fi or post-Apocalyptic horror film was pretty common at first.)
If you are dealing with any customer relations on the phone especially health insurance, ask immediately for their supervisor. A friend’s friend does this and adds “You do not make enough money to deal with my problem.” Having had many friends who worked in call centers, I can vouch for this also being true. They are in a bad mood from being yelled at all day and usually are not paid enough to care if you are being helped. This also works if you are having trouble understanding someone’s accent in another nation. Just ask for a supervisor. Usually they are from the nation that outsourced the jobs. It is easier for everyone. If there are any medical bill issues, keep a log notebook of the day time and to whom you spoke with at the billing office, the insurance company, and any other parties involved. Write down what they say but leave no spaces between entries. If you leave spaces, it doesn’t work as well in court because they could say you added things later. The same is true if dealing with malpractice or other legal issues like housing.
Use a damp sponge to “lick” envelopes so you are not exposed to the glue. Don’t worry people are looking funny at your mask.
Today there are so many sick people who wear masks, if someone looks twice at me I assume it is because I am so fair they are checking I have lips or if they were covered up. Someone who noticed the masks asked our doctor if we have bone marrow problems. Persons with asthma or lung cancer often wear masks. If a little kid asks me about it, I just say I was poisoned once and now have to be careful what I breathe so I don’t get sick. Always remember: Most people are self absorbed and are not interested in your mask. If they do make a joke, like one guy in a waiting room “Is this a stick up?” ignore it as your energy is needed elsewhere. If you have a MCS brochure with you, you could hand it to the person before you leave. That way you do not have to discuss it.
If social security will not pay you disability benefits for MCS but will for some “mental illness,” it may be worth taking it. Yes, you have a psychiatric label, but you also have a (small) income and (some) medical care. 50% of Americans have a psychiatric label and many do not know. Whenever a TAB (temporarily able bodied person) tells you that your illness doesn’t make sense, stay matter of fact and smile, saying you have books that explain the science much better than you can if they would like to be more educated. They would not like to be educated. This means they will be very silent.
With your old toxic stuff, maybe you do not want to make others sick. It is a tough dilemma. Where does it go? Landfill or someone else’s home? If you choose to not add them to the landfill yet and let someone else do it later, here are some ideas. Donate anything you cannot sell or barter to a charity. They need chairs, desks, printers, beds, clothing, paper, books, toys, and more. For home furnishing, many organizations will connect you with a person who needs furniture. They come and move it out. I have done this twice. It made moving really easy. All your toxic furniture, cleaning supplies and clothing? Barter them! (According to the IRS bartering is taxable. However, exchanging gifts isn’t as far as I know.) Example: Someone uses their truck to haul off your mattress, shower curtain, essential oils and press board dresser and takes what they want. If you own anything of any value that is intolerable to you now, have an estate or yard sale. Enlist a friend you trust to help (or two who can do it without you even being exposed at all – ask for this a birthday present) in case you become inTOXICated, along with a lot of small bills for making change and an ad in the local paper. Or sell it on ebay, craigslist, or another online way, if you want to avoid toxic exposure. However you or someone else has to go to the post office of the buyer is far away.
2/3 of bankruptcy in the United States is from medical emergencies. Like a person fleeing an abusive environment, people with MCS face homelessness, losing everything they own, abandonment by those who don’t believe them, instant poverty and loss of medical care. SSI is about $750 a month. It takes 3 years for someone on social security for disability to quantify for Medicaid. (Yes, you’re legally disabled and can’t work but for three years you have to pay for your medical care.) The low income housing wait list in the several upstate New York and New England towns I’ve contacted have three year wait lists that haven’t added names in many years, making it a wait of five to eight years for a toxic apartment that is affordable. Disability housing also has a wait list that varies depending on your needs and family size. A lot allow smoking! And are totally toxic. Be prepared for reality.
Middle class, heterosexual Caucasians seem the least emotionally prepared for the reality of losing their invisible privileges; privileges they believed others had. They become second class citizens. That’s ableism and why you’ve been drafted into the extended Civil Rights Movement. Turn your anger into action. Also, you’re not going to have those privileges again, just like everybody else without them. You’re actually now in the world majority: a marginalized group of people treated like they are worth less. You’ll get used it – other communities struggle with survival issues everyday, too.
My biggest regret is that we threw away my 15 photo albums, my journalism tear sheets and my art in our nontoxic frenzy. We were having exposures, panicked and alone. Today I would have suggested we ask someone if we could store those two boxes at their home for a while. Photos are very hard to lose. It’s my only proof I once had a life involving other people and places.