The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Do you need a book that teaches people how to be fragrance-free?

Discussion in 'Hypersensitivity and Intolerance' started by Dainty, Oct 22, 2017.

  1. Dainty

    Dainty Senior Member

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    Anyone with MCS, or family/friends/caregivers of someone with MCS...

    Do you need a book that spells out exactly the sorts of steps people need to take in order to safely (or safely-ish) be in your presence?

    I ask because for me it was one of the most isolating factors of this illness, affecting everything from social life to medical options to caregiving solutions. When I was most severe my mom and I tried to communicate all the things people needed to avoid before seeing me, to little avail. So many people would insist they weren't wearing "any of that stuff" even as it was closing my airways, and so obvious my mom could smell it too. Or they would be like "just for you, I didn't wear perfume today!" and a simple hug to them required extensive decontamination protocols afterwards.

    It had me thinking that I was too severe, that I was asking too much of people.

    But now that's changed.

    I've been working at a place that successfully caters to quite ill MCS sufferers, but also allows non-sensitive folks to stay there as well, provided they follow the strict rules about fragrances and toxic products. Regular folks often have a bit of difficulty adapting, and so things need to be spelled out to them, e.g. they must begin avoiding fragrances 2 weeks in advance of staying there.

    If someone begins using a problematic product, we recognize it right away, identify the offending product, and bag it up, with a note that the guest unfortunately may (EDIT: I meant may NOT!) use it until after they leave.

    If someone's clothes were dry cleaned, they are bagged up and left in the garage to take with them when they go. Sometimes guests have to buy or borrow clothes, because they're too contaminated to even risk washing them in our washer!

    What surprised me is it actually works.

    Guests I had to always wear my gas mask around, were suddenly okay to be around. Because they were educated on what they had to do. Many come assuming they are fragrance-free, and leave with a much better understanding of what that actually means.

    And it's got me thinking - what if this knowledge was out there? Like, if MCS sufferers could refer someone to a short book that spelled it all out, rather than attempting to explain everything from scratch?

    Before I attempt such a feat, I want to make sure I'm not the only one who would read it. What do you think? Would this be useful to you? If not, what would be more helpful?

    (If anyone is uncomfortable replying publically, please feel free to PM me, or if you'd rather do email I can share that by PM too. :) )
     
    Last edited: Oct 23, 2017
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  2. Jesse2233

    Jesse2233 Senior Member

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    Do it Dainty! Make it an ebook and get some nice side revenue from Amazon. It will help many, there's definitely a market!
     
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  3. Dainty

    Dainty Senior Member

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    That's the idea!

    Thanks for the encouragement. It's a tricky subject, but I can't think of anything similar out there that's meeting the need. And I think a lot of people *want* to be able to interact in person with MCS folks and be safe for them. The disconnect isn't from the desire, it's from understanding all of what's involved.

    I think it's also one of those things where if it was coming objectively from a book, it's easier to stomach than when it's coming from a friend telling you you can't use your favorite hair product, or whatever. :p
     
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  4. Alvin2

    Alvin2 If humans were rational...

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    I don't have any of these sensitivities but i do have some questions if its okay to ask?
     
  5. Dainty

    Dainty Senior Member

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    Go for it!
     
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  6. Alvin2

    Alvin2 If humans were rational...

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    Thanks

    I wear no cologne or aftershave nor so i smoke (legal or otherwise) since the dust will bring on an asthma attack even second hand, and i try to avoid scented laundry detergents (when i can afford to, sometimes only the scented is on sale), but are things like shampoo and soap and scented laundry detergent or dish soap problems if you come into contact with someone who uses them?
     
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  7. Dainty

    Dainty Senior Member

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    Fantastic question. The knee-jerk answer is an automatic "YES, yes, a thousand times yes."

    The precise answer is "it varies". It depends on how recently you used those products, whether I'm visiting you in your home or meeting elsewhere, and also the degree of severity of the chemically sensitive or fragrance sensitive person.

    So take dish soap, for example. If you and I were hanging out somewhere other than your home, I'm unlikely to come into contact with fumes from your dishsoap. Now if you had just come from washing dishes by hand, without gloves, and we shook hands, then the residue could transfer to my hand an cause me problems (it happens a lot, but not necessarily from dish soap-any fragranced soap.)

    Shampoo and conditioner residues are worst for me when the person's hair is still wet. When dry it is less problematic, but I'd still have to keep a bit more distance between me and them, and must hold my breath for hugging or any other time their head is near me.

    Unfortunately scented laundry detergents, and particularly fabric softener and/or dryer sheets, are the worst.
    Often times clothing contaminated by them can never really be fragrance-free again. In fact, often times the laundry machines themselves have residue that gets into subsequent loads of laundry, even if you switch to using a safe detergent. I am unable to wash my clothes at public laundromats for this reason.

    People's clothes are often the worst culprit. If I hug someone who has that stuff on their clothes, it contaminates my own clothes. I get home, take off my mask, and then have to put it right back on again! I undress, put the contaminated clothing in sealed bags, and have to air out the place before I can safely remove my mask. Then I have to wash out those clothes separately before I can safely wash them with the rest of my clothing. It's a pretty extensive process.

    I hear you on the fragrance-free stuff being out of budget. :( Thanks for doing what you can...I know we're a picky bunch, but the effort is definitely appreciated!
     
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  8. Alvin2

    Alvin2 If humans were rational...

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    Anytime and thanks for your detailed reply :)
    That reminds me, i don't use dryer sheets or lotion of any kind or fabric softener (the VOCs in them are possible carcinogens so the reason i avoid is because why expose myself to chemicals that may be dangerous for no reason).
    Is any unscented laundry soap or dish soap or shampoo fine or only some?
     
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  9. Dainty

    Dainty Senior Member

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    Great questions, keep 'em coming!

    Honestly, I'm not sure. I do know some fragrance-free products actually contain what they call "masking fragrance", which is just as bad. That definitely complicates things!

    I'm actually looking into collecting some data on various products from fellow sufferers. I'm having a few people I know send me lists of the products they either use themselves or that people close to them use without causing them problems. My idea is if I can compile a "safe list" - maybe check it by having a group of volunteer sufferers try out samples of it to weed out any problematic ones - and publish the list, perhaps it would make things easier for non-sensitive folks. (If anyone wants to be involved in this, let me know!)

    @Alvin2 do you see a list of exact products being helpful for you? Or are general guidelines on what to get more up your alley?
     
  10. Alvin2

    Alvin2 If humans were rational...

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    I don't have any particular sensitivities, i just like to know how these things work.
     
  11. Dainty

    Dainty Senior Member

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    I meant being helpful for you, in terms of if you knew someone with these sensitivities and wanted to visit them, and needed to make adjustments to the products you use and such in order to be able to do so.
     
  12. Alvin2

    Alvin2 If humans were rational...

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    Not at the moment, i'm what i call a knowledge junkie, i like to know about everything so if it comes up i already have background knowledge. Its an odd hobby for sure but when people who know me want to learn about something they always knock on my door :redface:
     
  13. Strawberry

    Strawberry Senior Member

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    This is a fantastic idea! I'm also curious, if you all ready have a list of what "fragrance" products are safe (if any) and what "scent free" are not safe? (as in the scent maskers)

    I know 30 years ago, the only thing I had to avoid was perfume. I could use any laundry product, minus Tide or any other heavily scented. Now I can't use scented laundry products. I had also switched to Method hand soap (because they are septic safe) but I can no longer tolerate Method scents and am searching for a replacement. And you saw me react to the swiffer mop. That was a first! So now I am just going to use your trick of a wet cleaning rag on the swiffer. I don't know why I never thought of that!

    I definitely need to get my house "aired out" so that I can detox, but it would be nice to get it scent free enough for you. "M" is supposed to stay until I get back from Honolulu so that Pixie isn't completely alone, and "M" is my biggest problem with heavily scented products. So hopefully she doesn't drag her feet about moving out. (I originally asked her to move end of June!) Sorry about the rant, ignore this last paragraph! :D
     
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  14. Dainty

    Dainty Senior Member

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    You know, you're the second person today to ask me for that! Not only for a safe list, but basically a list of products that APPEAR safe, but actually aren't. :( I don't currently have such a thing on hand, but I hope to at least have a working "safe list".

    I think every individual with MCS has they own personal "safe product" list, even if only in their heads. If I could convince you all to share them with me (hint hint ;)) I could maybe compile them all into one big one?

    Yeah, no more swiffer mop chemicals for you! ;)

    It would be so awesome to detox your home! Can I help? :D It does sound like M needs to move out before that would be an option. The moment I came home my fiance was like "You spell like fragrance and cleaning chemicals." :(

    Regarding hand soap, I have a few recommendations offhand. I'm sure there are many more good options than these, but just to get you started:
    • Nutribiotic Pure Coconut Oil Soap, liquid (link)
    • Tropical Traditions coconut oil foaming soap (link) or solid soap (link - scroll down,l unscented version)
    • Dr. Bronner's baby unscented liquid soap (link), bar soap also avaialble but I have no experience with it, probably okay
    • Sappo Hill's fragrance-free bar soaps (link)
    • Cetaphil Gentle Skin Cleanser - not "natural" or paraben free, but totally fragrance-free (link)
    The first two options were the only ones I could tolerate when my MCS was most severe. They are still my preference at home, but will dry your hands out if used frequently. The Dr. Bronner's soap has some inherent natural scent, even though it's unscented. It's kinder on your hands, and it's what we use at the bed and breakfast.

    My understanding from preliminary research is that all soaps that are not antimicrobial should be septic safe. is that correct?
     
  15. Subtropical island

    Subtropical island

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    The Case Against Fragrance (link to goodreads)
    Book by Kate Grenville

    May be too basic but maybe that's what you need for introducing people.
    She mentions that "fragrance free" is what you want, not just unscented or ...something else that sounds good but might still include synthetic fragrances that have been neutralised odourwise. There's a lot of 'natural' and 'green' -washing on labels so looking at lists of ingredients and checking that the unscented product still doesn't have "fragrance"/"parfum" as an ingredient still seems to be necessary.

    I personally find that with food and now everything else I buy: the fewer ingredients the better.
     
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  16. Dainty

    Dainty Senior Member

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    Sounds like a great book, I'll check it out. Thanks!

    One thing I'm realizing, as I research, is there's a lot of material published that boils down to "don't use toxic stuff that has fragrance, it's bad for you!". I'm wondering if a different approach might make a different impact, one that begins with the assumption that the reader wishes to be fragrance-free for the sake of another person's sensitivities. It could neatly side-step the whole debate of just how toxic/unhealthy this stuff is or isn't, and instead get right down to "here's how to do it."

    Attempting to convince people to change their lifestyle isn't actually something that interests me. But providing info that helps remove barriers between people who want to connect with each other? THAT is something I can get behind.
     
  17. Subtropical island

    Subtropical island

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    Sounds good to me.
    I know I find it more motivating to go fragrance free or make other good choices for the sake of others around me than for myself. Realising there's a difference between eco-friendly no nasties brands and actually fragrance free was a surprise to me. I did it for a friend's baby staying with us
    ..and I love how it makes scent a choice and not a constant noise. It makes cutting lavender in my garden or gathering orange blossom's for my friend's bath (actually got her to do it) so much more wonderful on so many levels.
    Yes, bypass the 'how it is nasty' debate and focus on the how to live a fragrance free life ...so that any scent in your life is by choice, and genuinely enjoyed by everyone who has to smell/be around it. So that your whole life is cleaner and healthier as you can smell the real state of things rather than masking them. Knowing that the 'stranger on the bus' has gone about their day without it being clouded by your, to them, overpowering scent (which you can't even smell anymore). Too many reasons why, focus on how sounds great.
     
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  18. Starsister

    Starsister Senior Member

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    Have t read the full thread so maybe this is already discussed, but after over 30 years of increasing scent and chemical sensitivities, I just got it through my head last year that unscented and scent free are two totally different things to the manufacturers. I was on an emergency quest for hair shampoo that didn't make me sick, and nobody in the CVS pharmacy could understand that I truly needed fragrance free. I keep buying shampoos and having to return them because of misleading advice. Turns out things are labeled unscented but that just means they didn't ADD any scent.
    And everyone thinks when you are looking for something fragrance free that you are just one of those "weirdos" and they direct me to everythng that says organic, natural, etc and can't comprehend that scents are different. And folks also don't understand that it is not the SMELL that is unpleasant..(often it may be a scent I love or used to) but that it is an actual physical reaction and illness that it triggers. They seem to think when you say you need no fragrance, that we have a choice to just tolerate the smell for awhile.
    Yes, Dainty, I think it is a great idea to write a book explaining all this to those who haven't lived it. And include things NOT to say to someone with CFS...I've even had friends who have cancer but look fine on their good days say to me, how can I be sick because whenever they see me I look fine. I'm ready to challenge them to come over to my house hang out with me while I'm in bed in pain, since they judge me based on seeing me out a couple of times a year at a social event I knew I could miss without disturbing anyone if I felt too ill. I want to shoot the next person who tells me I look great when I've just finished telling them I'm in excruciating pain! Sorry for the rant. Just had my share this week of negating comments...like hypnosis will heal me...etc. I wanted to tell that person who had heart bypass surgery they should have just gone to hypnosis for their heart.
     
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  19. Starsister

    Starsister Senior Member

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    Regarding scents...I have a sign on my front door to not enter if they are wearing scents. And when they do because they don't know their hand lotion has a scent, I have them wash off and provide them a tee shirt. Embarracing to have to do to someone I hardly know, but once a scent is in my house, it is nearly impossible to get out, especially the fabric furniture they sat on.
     
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  20. Dainty

    Dainty Senior Member

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    I get this too! They think that if we don't like it, we're just forced to put up with it...but that really isn't the case. It causes immediate physical symptoms, that can last for hours or days in some cases. We need no fragrances period.

    Rant away! It really sucks to receive these types of comments. The "hypnosis fr their heart" thing made me smile, though... :)
     
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