Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

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

    Messages:
    1,709
    Likes:
    2,213
    Seattle
    I'm beginning to pull this project together enough to have a solid go at it, but I could sure use your help. If anyone has their own personal list of products that are safe for YOU, or safe to be used around you, I'd love to hear it!

    I'm also planning to switch over to an email list for updates on the project or ways you could help, so if you want to be on that list you can either PM me your email address or just ask to be on the list and I'll give you mine to send a note to so that I have it. :)
     
  2. Subtropical island

    Subtropical island

    Messages:
    94
    Likes:
    379
    :hug:

    :hug:
    I don't have MCS as far as I know (still finding things that contribute to my symptoms) but I read the book above and it helped me understand the difference between being someone who goes for the no nasties approach (I even grow my own organic food) and actually knowing what's in all these products (the familiar brands that we grew up with aren't even the same as they were, especially in fragrance chemistry). We've been acting on trust without thinking.

    What I wanted to say is just that we could have a society that allows people with mild MCS to get out and about if we stopped forcing these fragrances (chemicals designed to float about in the air long after applied) on them. There are plenty of reasons why not to use them even if you don't have MCS etc and, unlike most food choices or products around your home, fragrance (even if unscented) is something where you impose your choice on others.

    [edited below to reduce OT rant]
    I relate to your rant when it comes to food. (Which I know is a lot easier)
    I can't tolerate preservatives (all the ites: sulphite, nitrite, etc) to the point where now I have eliminated them I can function as mild or moderate but if I, say, eat something with commerical vinegar or dried coconut or canola oil in it I'll be nauseous and diarrhoea for days and then weak for a month.
    I never thought I'd be annoyed at people for food choices but now that I am a lot more sick and it really is serious, I find my patience for people who sometimes get a really little bit bloated for an hour or so or don't have any reaction at all ...and assume that everyone is like them is less. They're the ones who make me feel like a drama queen because I actually have to insist on what I need or not eat (this makes me cry just thinking about it as I'd rather just never eat than fuss). I can't afford a month of nausea because I want to be polite (been there done that).

    I'm very grateful that there are choices though (unlike fragrance).:(

    The hardest part is that, on top of losing your whole life of freedoms, we have to face people in our lives who could support us with understanding but who imagine somehow we're not trying as hard as they are, or they would, to be well. The only thing I can do is to remember that it's not me, it's their own issues. And talk here with people who do have genuine problems and do genuinely understand.
    And cry sometimes when I need to.
    And then carry on.

    Just wanted to say, you're not alone and it's real ...and it's very hard.:cry:
    Because that's what I need to hear and know too.
     
    Last edited: Oct 24, 2017
    Dainty likes this.
  3. Dainty

    Dainty Senior Member

    Messages:
    1,709
    Likes:
    2,213
    Seattle
    Yes!

    It's a matter of consent. We have a choice about what food goes into our bodies. But we don't have much of a choice about breathing air.
     
  4. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

    Messages:
    853
    Likes:
    1,758
    Japan
    I have suffered severe MCS, yet absolutely no reaction to natural fragrances.

    Also, I have no reaction to the fumes of bleach.

    I hope you write this book, the details of avoiding petrochemicals are not the hard part. It's communicating with those who don't have to worry about it that's so difficult. ;)
     
    Last edited: Oct 24, 2017
    Subtropical island and Dainty like this.
  5. Strawberry

    Strawberry Senior Member

    Messages:
    803
    Likes:
    1,500
    Seattle, WA USA
    Okay Dainty, I thought up a question for you last night. And I honestly don't know the answer, even though I have mild MCS! So it might be good for you to cover in your book. If my lilac or mock orange were in bloom (both are quite fragrant), could you be in my back yard or inside my house (after you help me de-scent it from M) if I have a vase full of flowers?

    My most favorite product is Cerave (lotion, bar soap and liquid soap). I have other lightly scented products that work (for me), but Cerave is the only one I would endorse. Oh, micellar water for face washing. My daughter introduced me to that one!

    Thanks for the list! Safeway has the Cetaphil, so I will have that delivered in a couple of days. (LOVE Safeway delivery!)

    Oh, another product question for you. Even though my "sickness" is all but gone, I still can't sing for squat. I read on Yasminia's website that it could be toothpaste irritating the throat. I am just about to start making my own toothpaste to see if that gets rid of the "lump in my throat" sensation. What do you use for toothpaste? Or do you also make your own?

    Also, thought it might be good to tag @justy since she is in the UK, it might be nice to have safe lists from around the world! I know there are many more Europeans on PR that have MCS, but she is the only name that comes to mind.
     
    justy likes this.
  6. Dainty

    Dainty Senior Member

    Messages:
    1,709
    Likes:
    2,213
    Seattle
    Good to know, thanks!

    Agreed!

    That would be incredible to have product lists from around the world! I do want to be really thorough in the lists, so going international would make that a bit more tricky for me personally. But maybe if I partnered with someone in the UK....wow, ideas.

    At this point, I'm thinking the product lists should actually be separate from the book. They'd need to be updated probably yearly as more stuff comes on the market, items get discontinued, ingredients change, companies go out of business, etc. And some people might just want to purchase the lists, and that would be cheaper than the book.

    My thinking too is, you know how there's businesses that strive to be fragrance free? Like hospitals, some doctor's offices, some churches, certain other social gatherings, whatever? How they tend to still have fragrances (though not as bad)? I'm thinking I could offer the lists to them, at a discount or free, perhaps their employees would be more likely to actually follow the fragrance-free policy. It's a win for everyone.
     
  7. Dainty

    Dainty Senior Member

    Messages:
    1,709
    Likes:
    2,213
    Seattle
    I honestly don't know either, I'd have to try it! I have pollen allergies as well, so I think it'd be more likely to set that off.

    I use Cerave lotion too! :)

    I know of a few different options offhand. But first, I have known dentist who have said you actually don't need to use toothpaste at all, it's the friction that does it. Other non-toothpaste solutions I have used in the past is diluted hydrogen peroxide, or salt. My mom has been using just salt to brush her teeth with for about a decade now and hasn't had a cavity since!

    But my partner wasn't too keen on that so I searched for a toothpaste that I could be around or use. One brand is Xyliwhite, I use their "Cinnafresh" flavor because all the other ones have mint, which I can't tolerate.

    Another one I've seen, but haven't tried myself, is Revitin prebiotic toothpaste.

    Hope that helps!
     

See more popular forum discussions.

Share This Page