I made it out of here once

There is in every true woman’s heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity; but which kindles up, and beams and blazes in the dark hour of adversity. ~ Washington Irving, The Sketch Book, 1820

I made it out of here once. After being tested for sensitivities to particular chemicals and then being diagnosed as sensitive to those chemicals, my treating Immunologist, in Victoria, Australia, Dr Colin Little, suggested I make major changes to my living environment. I did just that. I threw out all my perfume-washing-powder-fabric-softener contaminated clothing; I found a rental property out near the ocean at Portsea back beach: a beach house with no carpet, or fresh paint, it wasn’t musty or mouldy. It was a three bedroom, all polished floorboards, lovely, well looked after place, surrounded by tea-trees that were filled with parrots and kookaburras by day and possums by night. It was in an area where the neighbours were all holidaymakers, only around on weekends and school holidays (to torture me with their fabric softeners, lawnmower fumes and chimney smoke). And best of all, it was up high, and had kitchen windows I could open, allowing fresh sea air, straight off the ocean to come rushing in, blasting my senses with the magic balm of soothing sea breezes! (I tell you, when the sinuses are aching, and the eyes and nostrils are burning from the inhalation of chemicals, there is no drug, anti-histamine, or nasal spray half as effective as standing in and inhaling a blast of fresh salty air.)

The only air-borne chemicals I had to contend with were outdoor moulds and wood smoke. I took my seven year old out of school, moving her to another one; and started my life again. Sans chemicals. An anomaly actually, because chemicals are everywhere, and we, as a human race, need them. Apparently.

(Acquiring intense chemical sensitivities once again is testament to that need! Even though, it sure is a let down to be this way once again, I’m grateful for having been through this once before: I don’t have the maddening stress of questioning myself (and medical practitioners) over what’s wrong with me; or the mind-f–king craziness of trying to eliminate item after item from my life (and my home) in search of the singly elusive cause of my allergy-like symptoms. I don’t have to sit back and ponder if Reiki or Angel therapies or NLP will cure me, because I know what works. I’ve done it, and blessedly I’ll do it (and am doing it!) again. (Look, if those ‘therapies’ work for other people, that’s great! It would be an insult to them—and their therapists— for me to, even merely, suggest that they don’t work (because I’m sure they can and do help people in their own esoteric way, I just don’t have the energy or time or money to investigate avenues that are not a sure thing—for me! Except for meditation, but more on that in another post.))

When this life-changing condition that is chemical sensitivities, first reared its volatile-organically-compounded ugly head in 2004, it robbed my world of almost every material possession, and most of the social life, that I held dear. But by 2009, my life had improved so much: I hardly needed to wear a mask. And come 2010, I was talking myself up, over my amazingly, rapid recovery (chemical sensitivities, often called Multiple Chemical Sensitivities (MCS) (but, note: MCS is not what I was diagnosed with)), is seeped in this gloomy knowledge that it’s a permanent condition, because devastatingly, for some people it is)! It must have been a case of ‘transitional allergies’, I joked, or ‘over-toxicity’ in my body; I seriously considered that answer, because even though my diagnosis came from a respected immunologist, whose view was, “Chemical sensitivities is like and allergy, but the mechanisms are different.”, and the Doctor of Environmental Medicine (who I was also seeing at the same time) who told me a different theory,  “Your body is too full of chemicals; its reached its limit and, like a tank too full, it’s over-flowing with toxins and unable to filter them correctly.” I sat on the fence, right in-between these two ‘theories’ and just let the slow but obvious improvement in my sensitivities to chemicals wash over me. To me, it was something unexplainable, but also something I didn’t need to question either: so I just tried every reputable avenue and went with the flow–because something was working.

However, chemical sensitivities, or MCS,  just wasn’t something that people where commonly cured from (I had heard of two people, and that was it. Those two people were my inspiration–and that I’m grateful for too). And, I was better, so consequently, I felt as if I’d awoken from a nightmare, didn’t question it all too much, and (I was so excited about this) I moved back to the city, enrolled in a Professional Writing and Editing course (PWE), at Victoria University (VU), and got on with my life. I went to weddings, and christenings, I shopped for new shoes. Boy did I shop. I died my hair again (blonde) and I painted my toenails (to match my mood, often). I spent my afternoons sitting in coffee shops, writing on my laptop, and people watching. I loved people watching. I suppose, living in isolation can have that affect, on a social creature, like me! The best thing? Speaking to people, face to face, without my mask. I can’t describe the feeling of freedom to you right now—the hurt of not being able to do that at this time, is just too raw… And besides, I’m busy hiding behind the bravado, that I need right now, for talking myself up into wearing it so I can still partake of life.

I don’t want to go back to a life of isolation, seclusion and exclusion. I really, truly don’t!

Lucky for me, I have my retrospectorscope!

Now, looking back through a retrospectorscope, can be a guilt inducing, self-blaming experience, unless of course, this retrospectorscope is used to reflect on past mistakes, and then, further used to illuminate these mistakes so that they can then be used to make the necessary changes to any future actions, using them to improve, beautify and pave the path out of The Labyrinth of Chemical Sensitivities with the precious golden nuggets of wisdom mined from lessons learned!

So, these are the things I did over that five-year period that may have helped me get out of this Labyrinth of Chemical Sensitivities—the first time:

Avoiding chemicals:

I wore a mask everywhere I went

I didn’t go to many places (no restaurants, shopping malls, social functions, or confined spaces with other people)

I asked kind friends to do my weekly shopping for me

I sent my daughter into the supermarket for emergency items—yes, she was only eight at the time

I only saw friends or family who were willing to not use chemicals, including fragranced hair products, perfume/aftershave, deodorants, hairspray, fabric softener, and washing powders. It was a lonely time.

I only socialised with other chemically sensitive people—some with Multiple Chemical Sensitivity (MCS) type symptoms. It was an eye-opening education; one I’m truly grateful for.

I made my boyfriend and his children wash their clothes four times in bicarbonate of soda before visiting to come up and stay with us. And shower using fragrance free products on arrival. (Trust me, not a way to impress a guy and his kids!) (But, I highly recommend giving your man/woman this task as a way of measuring their utmost devotion to you

😉

I purchased foods from local organic farms, and I went in and did my own shopping. The people who worked in, and ran these farm-gate shops didn’t wear clouds of hydrocarbon dispersed solvents and fragrances, so I didn’t need a mask. It was liberating, and I made new friends (non-chemically sensitive people who didn’t surround themselves with chemicals!?).

I stopped colouring my hair—eventually. It took a few salon visits of getting sick, for me to stop completely.

Treatments

Sublingual testing with Immunologist, Colin Little, and using his drops (I had some car exhaust drops that helped amazingly with exposures), but the twenty or so other ones I tried were mostly non-eventagious.

I took vitamins, anti-oxidants and minerals from a Doctor of Environmental Medicine (Dr. Rob Allen, Donvale, Victoria, Australia): a liver function test showed part of my liver was not working correctly; I had high uranium levels (apparently a lot of us do), and mercury levels. I had low omegas as well.

Expensively, I had all my mercury fillings removed. (This was like a shot in the dark for me. I’ve always sat on the fence in the debate about mercury fillings being unsafe; the same way I’ve always sat on the fence about organic food verses chemically sprayed food– trusted in the experts. (No, I’m not being sarcastic; I’m a trusting person. Or rather, I was.) But still, I can’t say whether the mercury removal helped or not because the chemical sensitivities came back, and no, I didn’t have any more mercury based fillings placed in my mouth. At the outrageous cost of removing them, who would?))

The use of eye-drops (Bion Tears, preservative free) constantly because my eyes had stopped producing tears

An alkaline diet, high in fruit and vegetables.

I gave up junk food, replacing it with dates, dried fruit, apples (lots of apples) and dark chocolate

Other things

Long, long walks on the beach, and through the National Parks on the Mornington Peninsula. Daily, sometimes twice a day

Jogging on the beach, three times a week

Yoga, and weightlifting lightweights

On most days, I sat out in the sun, for at least half and hour

I meditated, daily, like a mad munk (okay a mad Miche)

As you can see by these lists, I took really good great care of myself. Another magic ingredient: instead of coming down on myself about my situation, I accepted it, and asked myself, “What’s good about this?” The answer, of course, was that I had this amazing opportunity to live a healthy, whole organic life. And, although it was a journey to get to that point, I was, and still am, grateful for the wisdom my illness has taught me! (But, I admit that, yes, lately I been using my retrospectorscope to bang myself over the head for not continuing that healthy lifestyle! All those articles in the news, the ones where ‘they’ talk about the skeptical issues surrounding organic food verses non-organic food? Learn from my lesson, don’t let ‘this’ happen to you. Believe in organics!)

I used only Akin unscented shampoo, conditioner and body wash.

I used Almond oil and apricot kernel oil on my skin as moisturiser

I found a natural way to colour my hair, I used to sit in the sun with lemon juice in my hair, this worked. I also used 3% peroxide, and chamomile tea (a really strong mix). My hair was lighter, but had a yellowy-slight orangey tinge to it; I liked it, it was satisfying to have done this myself.

I spent my spare time gardening, and in touch with nature; it soothed my soul immensely.

I sat back and watched my daughter evolve into a miniature wildlife expert. This could not have happened if ‘this’ didn’t happen to me, and we’d stayed in the city.

But wait, there was more:

I made my own olive oil soap.

I made my own lip balms, toothpowder, and then, excitingly, I started my own small Internet business, EcoAware – Personal Care.

I gave my time to a volunteer organisation, AESSRA, helping other people like, or worse of than, myself

Small milestones = Stepping stones out of the Labyrinth…

I noticed that breathing some chemicals, chemicals that had previously made me sick, no longer did. The washing powders on other people’s clothes did not affect me; in fact I couldn’t even notice them. Also, wood smoke coming from a distance away—not out of a chimney at close range—was not effecting me. Human instincts are amazing (I’m talking about the Limbic system in our brains): I’d have these moments, that I’ll call ‘Pavlov’s dog moments’, where I’d smell certain chemical odours that previously would bring on symptoms, and I’d think, Oh, quick, I must go, leave this place, or go inside, get away from this chemical smell (take avoidance behaviour), but then I’d realise, that yes, I could smell them, but no, it was not effecting me: my breathing, my eyes, my sinuses were fine. Can you imagine what a discovery that was? Can you see why I was convinced that I was almost cured from this affliction: chemical sensitivities? I could smell chemicals that used to make me sick, and nothing was happening, or if it did, it was way minimised! Chemicals were losing their impact on my health.

By 2010 (six years after my diagnosis and onto the path of recovery), these were the things that may or may not have contributed to becoming sensitive to chemicals again:

I used products containing essential oils. They weren’t effecting me, and it was so nice to be able to use a product where the scent of it was just that, a scent; a scent that smelled nice. No irritation in my sinuses, no stinging of my eyes, no rashes, no pain breathing through my nose. I loved Akin products and being able to use the scented versions was amazing. (My immunologist warned me to be careful with essential oils, some are known sensitisers, even though they’re natural. By my instinctual love of them told me different!) I also used Kosmea, even before my (almost) full recovery, and I adored being able to use scented products like these. Sadly, I miss them.

My love affair with scents progressed and I became less fussy with ingredient lists and used many products with ‘natural’ claims. Some of these contained fragrance, but hey, it wasn’t effecting me. No symptoms… At that point in time. (Hand creams, like L’occitane Shea Butter (lightly scented, and delectable, at the time).) However, I used no spray products whatsoever, but of course, I was still breathing in products other people were wearing (Isn’t everyone?). I slacked off, on the anxiety producing (on my part) and animosity producing (on their part) task, of asking people to not wear them. And you know what? There was freedom in that too!

I said yes to every invitation: weddings, engagements, christenings, church visits, shopping expeditions, dinners, parties, and restaurants: I was starving for the excitement of socialising with others. I always took my mask, and used it if necessary, leaving early if people’s personal care products (fragrance/deodorants) effected my health, causing symptoms; and there were a certain set of symptoms that happened quite often (a headache, a mysterious dull ache (unexplained by any doctor) on either side of my lower back, and sinus pain). Obviously to me, solvents were still a problem, and exposure to spray type deodorants and hairsprays on other people, or from air-fresheners, still bought on symptoms. I didn’t head the signs: the symptoms. (Yes, the retrospectorscope says I should have. Bang, bang. (Hits herself.) Ouch!

I let go of my expensive organic diet. I began eating sugar again, in the form or Cadbury Chocolate, for comfort.

I smoked a few cigarettes here and there, in social situations and under stress. (That is a shocking thing for someone who is sensitive to chemicals to do—and admit to—but in the interest of being authentic, and helping others, I confess that’s what I did.) Old habits die hard, and yes, maybe, just maybe, it has come back to bite me on my arse ability to live a healthy life.

I coloured my hair again, *but the products were organic*: Aveda hair colours (these have organic essential oils (not fragrance) and claim to be 99% chemically free and naturally derived), used by the same hairdresser where I used to get my hair done, in the same salon before I became chemically sensitive. But this time, instead of using fragranced hair salon shampoos and conditioners, she washed it out with my own unscented shampoos and conditioners (Akin by Alchemy). I was so happy to be able to colour my hair again. (It was sans mask too!) Then she changed hair colour brands, and silly (vain) me, let her use them on my hair. Of course I got sick for weeks afterwards. And my hair stunk of fragrance chemicals for ages. (If the topic of hair colouring and chemical sensitivities, resonates somewhere within, then you should check out my friends blog post ‘A Girl Just Wants Her Hair to Look Good.’ It’s insightful of the challenges that women who’re sensitive to chemicals face when it comes to choosing between their hair or their health; the choice should be blatantly simple, but for some of us, it’s not!)

As I’ve said already, I painted my toenails to match my mood. I did this outside, in the fresh air, and only stopped the practice when it hurt to inhale the fumes when breathing. (And towards the end, before I stopped doing it, the symptoms were so bad, I even wore my mask a few times while I applied the polish (or removed it) and waited for it to dry. And I was using the Three Free Nail Polish brand. For those who don’t know, Three Free are supposedly (non-toxic) nail lacquers, made by Butter LONDON: (as stated by Butter London), the products are formulated without the use of the harmful ingredients like Formaldehyde, Toluene, DBP or Parabens. (Restraining from whacking myself really f–ken hard with retrospectorscope right now.) All I can say about this dumb thing I did, is this: it’s something I’ve done all my life (and yes, my Immunologist did say that it is possible that the solvents in the products used in the application of false fingernails I’d used for most of my adult life may have caused my severe sensitisation to solvents in the first place), and, it’s an ingrained habit that I missed. Because I thought I was getting better, and when I saw women with brightly painted nails, and arty designs, I missed it so much that I truly believed I’d be okay with it, and could do it too. Now, when I look back through the Retrospectorscope, I feel shamed, vain and shallow, because now, one whiff of nail polish (or anything with solvents) makes me sick for days, but if I were to use the learning from that mistake then I could move on and find something good about it, something I can use to educate others, and create some sort of change in my world… (And maybe yours?)

Phuket, Thailand is a great place for a holiday. And Andaman White Beach Resort is the place to go for a honeymoon when you’re not having a honeymoon, and when my boyfriend invited me, I said, “Hey, why in heaven’s name not? I’m on my way to getting better; let’s go rock it for a bit!” Besides, he chose a private beach hotel, in the hope that I’d be fine there. And I was, the air was amazing. While there, I bought myself the most amazing back tattoo of a unicorn. (This act, I refuse to look back on through my retrospectorscope, because I don’t want to know. I love my tattoo, and that’s all there is to it!)

And then, February, 2011, three months later: THE BIG BANG! Three chemical exposures in one week, that for some reason, knocked me so hard, I’m yet to recover (I said YET):

• Someone (a person close to me) sprayed Round Up in the front yard, and didn’t tell me (They didn’t think to tell this *positive thinker*, me, the person that kept *raving on about being cured*.) I had the front door open all week, that is, until I saw the lawn turning yellow and realised, each time the wind blew in through the front door, I had been letting in residual fumes from weed killer into my house. And I didn’t think about this chemical exposure until a year later when looking back through, yep, you guessed it, the Retrospectorscope!

• The next one: A gas heater was removed (because I can’t use gas, it makes me feel vague, and gives me headaches), leaving a huge hole in the wall. That night, not realising that the hole had left a cavity, and an open flew (chimney like pipe), going up through the roof into–and allowing into the house–the outside air, I woke up to a house full of wood smoke (from my neighbourhood’s chimneys) that made me so ill, I was throwing up, with an awful headache, pain behind my eyes, facial pains, and pain breathing. (I hadn’t had problems with wood smoke for ages, and when I had, it was never, ever to that extent!)

• Then, the landlord filled in the huge hole in the wall with a piece of plaster, filling the gaps around it with a solvent based ready-made plaster poly filler (crack filler). This led to three days of exposure to solvents that caused me headaches, sinus pain, and breathing symptoms that I hadn’t had for years either; not since I was first diagnosed. It was pretty scary.

That start of the slippery slope down into the Labyrinth, in February 2011, was swift and savage, an by winter that year, I was so crook, I had cotton wool shoved up my nostrils because breathing through my nose was not possible; it hurt too much. My head was pounding all the time, and I was a miserable mess, taking painkillers, and lying on the couch, day after day, torturing myself with daytime TV; my eyes were so dry, at night my lids would stick to my eyeballs, and my only relief came from artificial tears. And if I cried, real tears, which I did, they stung like hell.

After a lot of rain, I noticed damp patches on the concrete in my bedroom. Then I found black mould on the inside of the windows, and around the frames. I saw the Immunologist again, and was told to run the heaters non-stop, and find a way to seal the floors. After taking action, my health was still suffering, and is to this day.

So here I am, back in The Labyrinth of Chemical Sensitivities. I’m a bit of a grump, and at times it feels as if not an iota of my life is working out for me right now. But back to getting out of here…

Theoretically, all I have to do to get the f—k out of here is follow the steps that got me out of here previously, right?

At least I have that retrospectorscope…

Coming next, what I’m doing now to get myself out of here…