Imagine How This Feels…

A while back, I came across this post.

A part of this woman’s life mirrors of my own. It’s freaky, actually. I admire her bravery and tenacity; but most of all, I admire her artistic merit. Her blog is full of creative insight. Seriously, you must visit. Just click here.

“I don’t know if there was an initial exposure that started this sensitivity, but I wasn’t always sensitive.  It started in my mid-twenties with a few perfumes and gradually escalated over the years to the point where low level exposures or even one whiff of a certain fragrance will make me very ill.  Right now, given that the “why” is unknown, the “why” to me is not as important as the fact than “I am” sensitive and need to make significant adjustments in my life and choose my health.  Other health issues themselves are already isolating enough, but fragrance and chemical sensitivities make it even worse.  This problem affects many decisions I make, and my social life is very limited.  Some of the decisions I’m faced with frequently are:

  • What products I buy – from household cleaning products to soaps, lotions, makeup, etc.  They need to be “fragrance free” or “unscented.”
  • What stores, restaurants or other establishments I visit – Will there be air fresheners, scented candles, or too many fragranced people?
  • What public events I attend – Is it indoors or outdoors?  Outdoors is better with fresh air.  In the last few years, I haven’t been able to attend events that I enjoy, like family get-togethers, ballets, musicals, concerts, parties.
  • What volunteer or other community service activities I get involved in.
  • Who I can be around and who I can socialize with – Will they be wearing fragranced products around me?
  • Whose car I ride in.
  • Who rides in our cars – Hubby has had to “de-fragrance” our vehicle when people wearing fragrances have ridden with him.
  • Whose home I visit – Do they apply perfume, use air fresheners or other scented products?
  • Who can enter my home – I have to be strict about who enters where I live.  It is the only place where we can make it safe for my condition.  Fragrances, especially many scented laundry products these days leave lingering fragrances, especially in upholstery, for several days or weeks.  Sometimes I have to leave my home and stay with my mother while hubby “de-fragrances” it.
  • What home projects hubby can work on and when – Most likely I will have to leave the house if chemicals are involved.
  • When I can go outside –Smells from fragranced laundry products emitted from neighborhood dryer vents trigger a reaction.
  • Who my “true” friends are – True and caring friends will help you.  They will be considerate, respectful and nonjudgmental of your sensitivities if they value a relationship with you.

Chemical and fragrance sensitivities is a growing problem, and it is concerning to me to learn about the types of ingredients that make up many fragrances these days.  I will post more about this later.  Over ten years ago when I was searching the Internet for information and resources, I came across only a couple of websites with passing mentions of the problem.  Now, when you Google “fragrance sensitivity,” “chemical sensitivity,” “multiple chemical sensitivity” etc., there seems to be endless hits.”

And then she linked to my blog.

It’s something I could have written myself. When I recovered. Before I moved into the Mouldy House of Horrors. However, now I hope to be able to get to that state where “de-fragrancing something might be even possible”. Even though, I know it’s not the de-fragrancing, but the recovery of the immune system that makes us less sensitive to the fragrance, which in turn, then allows us to de-fragrance items because our bodies can better handle the minute amounts left after washing things *4-5 times!*

My life is like this at the moment: if someone touches something of mine while wearing actual sprayed on fragrance chemicals, well then, I have to chuck it out (you know, give it to charity or a friend or something…). My only other choice is to leave it out on the washing line until the sun fades it, which makes it useless (for wearing) anyway.

It’s unfair, the way fragrance adheres to material possessions, totally wrecking them. Unfair in a first-world-problem type of unfair. (I mean, at least we have clean water to wash our clothes? Image being chemically sensitive in a third world country? Kind of puts things into perspective, hey?) But what’s even more unjust than this first world chemically sensitive mindfuck is that the chemicals in fragrance wreck havoc with our immune systems, leaving us sick—in various ways—sometimes for days. And, what’s really fucked up, and an injustice on our government’s part (for not creating awareness of this issue), is the viscosity of damage that seeps its way into some of our, already fragile, relationships, flooding them with animosity, destroying any semblance of hope of them ever being repaired—or saved.

We all know that family issues can be complicated. But if you’re not chemically sensitive, then just imagine your most difficult or distantly distant relative (or extended family member), and then imagine asking them not to wear fragrance to the next family function. Or, imagine asking all of them. The ones you get along with, the ones you don’t, and ones who you know secretly harbour fantasies of you accidentally slipping—or being hit in the back of the head with a shovel so that you fucking fall down—off a cliff.

Now imagine them just ignoring you, and sitting there all smug, and all self-righteous in their cloud of Armani or Dior… Knowing that they know it makes you ill. Imagine how that would feel on an emotional level? Then imagine it on the physical level, which in my case would be swollen eyelids; dry eyes, from lack of tears; burning, dry nostrils; a hot stinging rash on my face; a tight chest, along with pain breathing? And if I left the function, and showered straight away, I could recover the next day; however, if I stayed, say out of obligation to the person whose birthday/wedding/whatever it was, then it may take me days (or a week) to get over the inflammation, and fatigue part of it.

Later, when I, or people who love me, explain it to that particular person, and the le-douche-da-smelly-arse fragrance wearer says: “It’s my right to wear whatever I please.” Imagine how that feels? (Yeh, I know, think back to the smoker’s ‘rights’ in the ’80’s! Caused by companies who were paid to ‘doubt monger’.)

Now, imagine the psychological anxiety caused by anticipating seeing that person? Especially, when, yes, again they have been asked, and there is a hint of expectation for just a modicum of respect for my human right to breathe; oh, and the high-held aspirations for our relationship to grow; and the desperation for them to just bloody get it right and care about my health: all this, and more problems (think arguments, glasses breaking) leading up to the event?

Of course it’s all bloody doomed! (If I feel like that, then I don’t go… anymore.)

If people can be so attached to their designer perfumes, and become so offended when asked to “please not wear it” because its effecting our health, how is it that they can’t understand that it’s not the ‘smell’ of their Aftershave (or French Parfum) but the Bloody, God Damned ‘Chemicals‘ used in the manufacturing of the contents of that prestigious, shiny, sparkling bottle they egotistically spray out from each day? (In my case I’m venting about people I no longer, or hardly see. Because of the ‘Fragrance Issue’.)

Because even though I’ve been so much better lately, there are parts of this life that are still full of things I must do, organise, plan, buy, wash, air, or investigate just to get by. It’s necessary for survival. And they take up a lot of time. Many of those objects on the list end up as failures because I can’t have them near me. And that makes me tired.

With material possessions, it can be disappointing to find that they can never come into the house. But it’s the human failures that I try to ‘fix’, and finding I can’t, that really frustrates the fucktard out of me… Especially where extended family, immediate family, and friends are concerned. I’m so close to heading into isolation because of this. (No, not heading out bush. I’m already an hour and a half drive away, living out near the ocean. Just being assertive and saying (in metaphorical terms), “Look, just fuck off!” but in my usual diplomatic, yet blunt way… “Look, just fuck off!”)

I know, I really shouldn’t complain…

Because, yes, I’ve been so, so lucky with my classes at Uni. All of them were fragrance free this year apart from one where I had to leave and go to the perfume free room in the library (it’s no biggie; it’s a lovely room). Approximately 43 people helped make my classes fragrance chemical free for the first semester of 2013. My dentist, my doctor, one of my councils (I live on the border of two), my neighbours, my real estate agent, the owners of the house that I rent, they’ve all understood and made accommodations for me (not just with fragrance, but with notification of lawn mowing, spraying, painting and burning off too).

My daughter’s 18th Birthday turned out to be a fragrance free event. Some of the above needed a lot of negotiation but it’s worth it when the end result is positive. And I’ve learnt some really good people skills out of this. It’s turned out that organising places, people and appointments to be/go fragrance free is turning into a talent. I’m getting really good at it. No, isolation is not an option. I’m here to stay; I just need to be judicious about my choices.

Ultimatums

But in my home-life? Where some people just don’t get ‘it’; it can be so frustrating, I could throw darts at people as they walk up my driveway. Repeatedly. Luckily, if I feel like that, I ask people not to visit, to just leave me alone for the weekend. Like one of the last long weekends we had. It was the Queen’s Birthday long weekend and I asked the people who are the closest to me, to not to come up. I hadn’t been well the last couple of weeks leading up to it; and having just recovered, I asked them not to come stay because of the possibility of fragrances on their clothes (and who knows what else).

That way I could breathe without pain or other symptoms that can be bought on by fragrances getting on my furniture and in my house. Fragrances that come from them being in a relative’s car or home that has fragrance chemical emitting devices (not from them actually wearing it).

Then there are the ones that wear it everyday. I try to educate, and explain to all of them that I really need to avoid chemical exposures so that I can get better. I’ve done it before and I know I can do it again. But by the looks of things, and the symptoms bought on by breathing these chemicals, I may have to isolate myself from some people. (It’s five to six people. Two of them don’t use any fragrance products (they care about me that much!) yet the rest use so much that it gets all over everyone else and every possession they have with them: spray deodorants, hairspray, gels, shampoos and conditioners, aftershave; and then there are the fragrance emitting devices in the cars and the homes and the washing powders and the fabric softeners (which absolutely wreck me).

I keep a change of clothes for some people when they visit but some of them resent that (or something?) and the situation becomes fraught with difficulty. Oh, and I buy so many fragrance free products as gifts, so people have no excuse. Yet… It’s a minefield of human sensibilities. One step wrong. One conversation while on the back foot of chronic pain: BOOM! Another relationship destroyed. I’m learning, I truly am.

I’ve persuaded others to change washing powders (that was a long drawn out decade-long battle, which I may blog about another time), and I’ve had the person who does my grocery shopping buy replacement fabric softeners that contain essential oils instead for family members. (Not that I can use these myself but at least they don’t cripple me with chronic pain in my lower back on breathing in the ‘chemical components’ of the ‘scent’!) But just trying to control others who I have no control over is exhausting!!! (In Edit one at VU, we learnt that using more then one exclamation mark generally means that the person is hysterical!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)

Lately though it’s wearing me down. I can’t be bothered. If people don’t want to do it. Why should I beg, plead, bribe, gift, show doctor’s letters (to friends and family, really?) and stress out about their visits? It’s been four months since I’ve visited any of these ‘contentiously impossible’ people. Fuck, I get so sick when in their houses. I get so sick when my family members visit them, then come and stand in the same room as me, forgetting to change their clothes before coming in. If the same chemicals that are in cigarettes are also in fragrances, then where is the education about that?

I’m constantly trying to educate people.

And, yes, some times I lose it. In a bad way. Is that the control freak exploding within? Or is it just the last method, after trying many others, to get my message across? Exploding can damage relationships; but the act of exploding can also show people who love you that something has to change. But it doesn’t feel healthy because my heart feels broken if said ignorant behaviour does not change. And I guess that makes me the bad guy too. (Anthony Robbins, of all people, once said that “the person is not the behaviour”, and I try to remember that. I do.I guess that also means that the person is not the illness? And that when I explode it’s not the true me? It’s just me on the peripheral of my emotions, trying to gain control over a situation I have no control over. No, that last part is a cop-out. Of course I’m in control, when I’m in control.)

Ultimately, ultimatums can be good. If people really love me, or if they really care, then they have to change their behaviour…

Solutions to Family Members Wearing Second-hand Fragrance

Wearing a mask out in public is not fun. It can be embarrassing, at times, because it can be embarrassing for others—depending on who I’m with—and if embarrasses them, then that makes me feel that way too. If the people who I’m with don’t care, then I don’t care; I’m just happy to be out doing something ‘normal’. But in my own home, I don’t wear a mask. And I don’t expect people to walk in while wearing fragrance (I reiterate: usually second hand fragrance (from visiting someone or somewhere where there is fragrance in the air) that has adhered to their clothes) but it does happen.

One solution: We have plastic boxes with lids in our house. Clothes that are worn out to fragranced houses or supermarkets, fragranced buildings, or weddings, or other social gatherings, get folded up and put in here (later they are washed, re-worn or aired). Then, we have ‘clean’ clothes that are only to be worn in our house or if we go somewhere in the car together. (Makes for a lot of washing, sorting, airing, folding and policing!)

Another solution: We all have clothes that we have agreed are going out clothes. These are our good clothes that live in a state of perpetual ‘airing’ on a clothes rack, in between washes. Family members leave their clothes outside, then bring them in and put them on the rack. I’ve found that wearing the same clothes to three different places, appointments, classes, or shop for the whole week, saves on washing. If it’s an emergency appointment, like at my daughter’s school, and I’m sitting in a room with people wearing fragrance, then those clothes will be washed straight away, or left outside until they can be.

These are rules. If people can’t abide by them, fuck is the general direction they can head off to. It is a clear boundary that has been drawn up by circumstance. Sometimes this boundary breaks my heart, I don’t have a choice about getting sick. And after living two years of chronic pain in that house, and now that I’m on the mend, this matter of avoiding fragrance exposure is serious business. And, as sad as that is, I have to do whatever it takes… Even if I do internally combust from time to time :)

My advice to others going through fragrance tribulations with friends and family.

    • Push on. Gently.
    • Educate (If you are in Australia, AESSRA have some great brochures that tell it like it is (Order 50, give them out to everyone!).)
    • Set up boundaries.
    • Expect people to cross them by either forgetting or not giving a cat’s toss (if you expect it, then you can rehearse what you will say).
    • Set ultimatums.
    • Be prepared to get hurt; but also be prepared to be surprised just how kind some people can be: this physical condition that echoes it’s own social conditions will show you how people truly feel about you.
    • Keep pushing; don’t give up. You have the right to breathe without getting ill.
    • Face the hard cold fact that you may have to choose between getting ill or not seeing people you care about. And if it turns out that it’s the latter, then you just might be better off because you won’t be sick, you’ll respect yourself for caring enough about your own health to speak up or take appropriate action (or in-action), and who knows? They may just feel the appropriate amount of guilt to come back to you.
    • If you lose it and find yourself exploding and screaming at people you love, don’t be too hard on yourself. Sometimes people need to hear the truth. Really. Loud. Sure, there are better ways. However, screaming is a natural response to pain and there’s only so long  a person can sit quietly and politely through pain. (Screaming will reduce your psychological stress. Trust me… )

Ultimatums have a way of forcing others to change their behaviour. After all, they are not their behaviour. They are not that designer fragrance that they wear. No matter how much advertisers tell them they are.

perfume_bottles

What have you done lately to persuade someone to change their behaviour? Do you have any methods you’d like to share? Do you sometimes prefer to be alone rather than have your health harmed by breathing in other’s air-borne fragrance products?

(Featured image from www.freeimageslive.co.uk/image )

Michellina Van Loder is a Professional Writer, Journalist and Blogger. This is where she shares her tales about trail blazing her way out of the Labyrinth of Chemical Sensitivities and Mould. This is also where you will find the latest Research on related topics.

About Michellina van Loder

Comments

  1. Hi Michellina,
    Just found your site today as my partner is pushing me to make up my mind on a new mattress..it literly has a few holes in it from the springs coming out..and is getting way to lumpy for his comfort. I’ve been kindly sent a latex sample from a mattress company but it still smells to strong after many weeks.

    Looking back I now know why I developed chemical sensitivities and would like to share my experience if I can.. just in case my experience may help anyone else out there.

    I started to get sensitive to so many when I was several months pregnant… and yes I knew expecting mums get sensitive to things so I put down all my hurts and illnesses, foggy brain, peeling skin etc on that and not that two huge multi headed mobile towers were constructed very close to our home when I was just over two months pregnant. (this was in the ‘early’ days of mobile towers when there was not information on ‘towers’ and ‘health’)

    I was continually having to add new things to what I was sensitive too..until my child was around 8 months old and we finally moved out. At this stage I was even sensitive to electricity too. I could no longer stand next to my electric oven etc and just turning off a light switch give my hand and arm ‘pins and needles’ feeling that lasted for several hours (so I ended up using a wooden spoon to turn on/off switches). Within weeks of moving away my sensitivity to electricity quickly faded (I can not use hair dryers, electric power tools and other high EMR item still).

    Besides being chemically sensitive, to so many things, I can not be around mobile towers, Wi-Fi, wireless security camera and mobile phones. I’d like to also say before the two mobile towers were constructed close to my former home I was in great health and had no allergies or sensitivities. I know this was the start of me having MCS.

    However I’d like to mention again that EMR from wireless communications my not increase or induce MCS but in my case I know 100% it did. I’ve since found many articles also linking MCS with Electromagnet Radiation (mobile towers etc).

    Best wishes to you.

    • Michellina van Loder says:

      Hi Vanessa, I’ve heard of and met people who have chemical and electrical sensitivity. I, myself, don’t; however, I make sure to turn off all wireless equipment at night so that EMR levels in my home are kept down. it’s good that people are becoming more aware of this issue; and it’s even better if they understand to turn of their phones when around people such as yourself. I always do. It’s like going fragrance free for someone, instead, we go electricity free (as much as possible). I do know that people with high EMR levels try to sleep away from the power box. Some have even installed metal plates so that they can block some of the EM signals. And others go away on ‘camping trips’ so as to have a break from it all. As far as mattresses go, I think you might be better with a wool futon (if you are okay with wool?) or you could try cotton. The wool is less likely to go mouldy; and given that you can air it out before use, you may find it helps with sensitivities. A good night’s sleep is so important for us. I’m not sure, but I don’t think the innersprings would help for someone with EMR. They may act as an antenna for the EMR signals? Anyway, that’s just my thoughts on mattresses and EMR…

      I have recently purchased another mattress from Aussie wool quilts. They make futons using organic wool however it’s not certified (well, it’s the same as what is used by an organic company they sell it to, it’s just Aussie Wool Quilts don’t have the certification themselves–if that makes sense?). They have a service where they wash the outer cover in bicarb for people sensitive to soaps. I hope this is helpful to you. Thank you so much for dropping by and sharing your story :) Here is the link to where I bought my latest mattress: http://www.aussiewoolquilts.com.au

      Best wishes to you, also :)

  2. I hear you, I understand you, I empathize with you
    …and thank you for giving so much attention to my blog posting and for the link back.

  3. You said it like it is.

  4. Excellent post, Michellina. You continue to educate people about fragrance sensitivities. It saddens me that some people don’t understand or listen to your pleas to stop wearing fragrance or change into the clothes you kindly provide in your home. It is not like you want to inconvenience others… You want to be healthy. I would never fault you for that. Continue with your wonderful work here, my friend.

    • Michellina van Loder says:

      Why thank you, Christy. It saddens me too, but you know the saying, actions speak louder than words? Well, so do inactions. To live healthy is my aim; and it’s the benefit of having this condition: I get to live a healthy lifestyle. Also, I suppose dumping toxic relationships can help benefit the immune system by dissolving stress too–so really, it’s a good thing when I look at it from that perspective. Thank you, you continue with your totally inspiring work too.

      PS: I’m about to buy your book. $3 for such excellent work, is a total bargain! http://redmundpro.com/authors/christy-birmingham/

      • Michellina, you’re so right about ‘dumping toxic relationships’ – it’s amazing how damaging stress can be for the body! I appreciate the kind words about my work too. I am excited for you to read the book!

  5. Thank you Michellina, it was if it were me speaking as I read your words.
    I even am being targeted by people across from my home. It is hell as you know.
    Privacy gets breached, them people use chemicals as weapons against one who is sensitive.
    Nightmare, but all one can do is try to move forward.
    Laws need to change about ‘weed spraying’ by ignoramus people who reside across and around, in fact all people need to be educated as the toxic load is on everyone, and just ‘cos they are ignorant of the injury they are doing, everyone is at risk, and of course we with MCS sense it and become overcome and ill more quickly.
    Thank you for your valuable words. Hope you’re having a good day.

  6. You have the right to complain, especially to those of us that truly understand. It is completely exhausting to have to deal with these issues on a constant basis, you are always “ON” and on guard about it because you have to be.
    I can’t spare the energy to argue or educate or put up with the selfish, ignorant creatures any more. I am isolated, home-bound, alone, I don’t even go to “church” any more because when I do I have to sit in a room by myself and can’t associate with anyone due to the scented products from the main hall, whether it is cleaning products or the perfumes and deodorants, washing powders etc that people soak themselves in, and I don’t feel that I have the right to make hundreds of people change their way of life just for me, nor do I have the energy to try to train them.
    Going out usually results in days of feeling horrid so is not worth the trouble either.
    I have adjusted my diet recently, finally going Gluten free and additive free, mostly “raw” foods which require preparing and cooking, time and effort, and when I feel unwell I just don’t have the energy or mental capacity to do it, but my stomach and system have adverse reactions if I don’t eat also, it’s a seriously problematic balancing act just to live each day.
    People drive you crazy, they are either totally ignorant or completely selfish, and those who think they understand are quite often a special source of stress because, in reality, they actually don’t. My daughter “understands” because she grew up with me, but she is still smug and intolerant and impossible to reason with because she “knows”, and she hasn’t a clue really.
    My husband, who I love to pieces, has pretty much given up after 30 years of it, and he has his own issues, but after work he doesn’t have the energy or will to do anything and so I am left with the lot, which causes so much anger and resentment in the house.
    I would just like a vacation from it, to feel free from having to think about things every second of every day, free from worry, panic and hopelessness. But it’s never going to happen, even though I am “better” than I have been, I am still not well and still unable to function properly.
    The days are just ticking away and I am simply marking time and getting older and life holds no joy or place for me.
    Wow! Didn’t mean to sound so negative.
    Thanks for the rant.

    • You spoke for me also when you wrote this Heather, thank you Michelina for openeing the way for us.

    • Heather’s letter could’ve been written by me, verbatim. Getting older. Anger. Resentment. Sometimes hopelessness. Not necessary to give another “story”. Heather already spoke for many of us. I’m overwhelmed and isolated. I feel as if I’m in prison for a crime I didn’t commit. Please let us release our anger and resentment. I feel that to adapt it as our “security blanket” means that we’ve been poisoned twice. Let’s move forward and make the best of it. Nothing will change because of bitterness, but everything is possible in spite of it. My thoughts and prayers do go with all of us. Peace.

      • Michellina van Loder says:

        Thank you, John. I’m sure that, you too, speak for many of us who have been sick for a long period of time. There’s the hope that us ‘oldies’ will make it better for young ones to come. And the world will see, if only on an economic level, that they are missing out on a vast array of talented and skilled people who can’t partake in society due to the petrochemicals and solvents, and fragrances with so many toxic ingredients in them (that even the International Fragrance Association (IFRA) admit too) used in personal care products that are not regulated in Australia, Canada and the US.

        Compassion is what’s needed here. I’d like to see the Governments lead the way here!

        PS: by oldies, I mean no disrespect to you (or me), I just mean we have had to battle this for some time now.

        Peace to you; and cheers :)

  7. This resonates with me so much. Fragrance sufferers have to go through so much pleading, requests, wishing, hoping their friend, family member, coworker will listen. When you do not get your needs met it can be devastating and so hurtful. It takes years of practice to build yourself up, grow a thick skin and really say fuck it – I’m not going to put up with this any more! It’s hard to do this with family members but I feel that if they are not going to respect a basic health concern then there are other areas of your life they won’t respect, and usually they aren’t very good people to be around. I wish it was easier for us all.

  8. Thank you for sharing this Miche. I am already following this blog and love it.

Information, products and views presented by guest bloggers @The Labyrinth are not necessarily the same as those held by this blog's author, Michellina van Loder. Reviews are my own personal opinions (unless stated otherwise); and satire is used throughout personal posts. Any health topics discussed are not to be taken as medical advice. Seek out medical attention if needed and do your own research; however, you're welcome to use mine as a start.
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