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.

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 )