Miss August

The Canary Report 2011 Calendar "The naked truth about multiple chemical sensitivity" is out now. The Canary Report is a source of information & support for people with MCS, their family & friends. Proceeds from this year's calendar go to the Environmental Working Group who provide environmental health information useful for everyone.

I'm supporting these because they support me in my day to day life as someone with chemical sensitivities. Buy a calendar.

How's the weather?

The other day I went out for a little walk - I can manage to get around the block ok.

I was wearing my t shirt that says "How's the weather?"

Walking down the street I began to feel self conscious as some young guy was clearly looking at me while mucking about getting into his vehicle (is it my mask? It's the mask, isn't it?).

As I got closer, he gave me a big grin...& the weather report.

:o)

A mars a day helps you work, rest & play...

Last year I joined Facebook. I ended up leaving after the privacy issues they had in the lead up to June this year but while I was on there I had random people asking to "friend" me saying: "I can treat your illness". All because I had linked to my local support groups.

Now I admit, I am no rocket surgeon, but I reckon if they had found an effective treatment for an illness they'd have published it in a peer reviewed medical journal...probably ran a few controlled studies...replicated those studies...and I really have my doubts that they would have tracked me down & offered to cure me personally....via Facebook.

In the way of miracle cures I see something new, or old but rehashed, or old & not rehashed, pretty regularly. The main benefit of the treatments that I can see, is that they will definitely lessen my concerns about money. If I don't have any money, I won't have any concerns about it.

Today I saw on the net that someone's brother recovered from his illness because someone recommended he drink water...Yep, they called him every day for a fortnight to make sure he was drinking his water. Me, I've been drinking water a long time and I'm still sick. Maybe I'm doing it wrong...But don't mistake me, I'm not going to stop drinking the stuff just because someone said it was a miracle cure.

They didn't get me on that "an apple a day keeps the doctor away" thing either. Yeah. I'll still eat an apple. And then you know what I'm going to do? That's right, I'm going to go to the doctor. Just sticking it to the man.

Silent Spring

"Can anyone believe it is possible to lay down such a barrage of poisons on the earth without making it unfit for all life?" (Rachel Carson, 1962)

Peeling the layers of the onion

It started a while before the onions actually.

Nail polish & chemical cleaning products (Ah, windex my nemesis). Those were the first inklings.

But that was only the beginning. Paints were next...and then came the onions.

Don't get me wrong: I love onion. In theory. But raw in my own house, or cooked to mush by a downstairs neighbour, it doesn't matter, they have me heaving.

This was when we started "peeling back the layers of the onion". Not literally of course. That would be stupid.

It hasn't ended yet. I haven't made it right to the core of the onion, I haven't peeled away all of the layers of things that make me ill.

From the outside, because there are less and less things I can tolerate I know it looks like I'm getting sicker. But these things have been making me ill the whole time, I just hadn't noticed because I had to deal with the "outer layers" first.

Giving up things is not nearly as hard as holding on to them, knowing they make you ill.

Disclaimer...

Last week someone told me that my blog was very "informative" *shock*.

Understandably, I was completely appalled - horrified in fact :o)

The blog is for entertainment purposes only. Any resemblance to education or information is purely coincidental & unintentional on my part.

If you feel that you may accidentally have been informed or educated by anything on this blog then I suggest that you take a nice bath have a cup of tea & a lie down until this feeling passes.

And for anyone wondering why I write this, it's so that you can sit back & a) feel better about your own life, b) know you are not the only one in the world or c) laugh at me. Mostly I prefer c.

Hospital guidelines (2)

Today I received this letter:

Dear...

Thank you for your email of 1 November 2010 to the Minister for Health, the Hon Daniel Andrews MP requesting follow up information on the distribution of the Multiple Chemical Sensitivities Guidelines for Hospitals in Victoria.

In accordance with the convention that the Government assumes a caretaker role during an election period the Minister has asked me to reply on his behalf.

I am pleased to advise that the South Australian health department has given permission for these guidelines to be used in Victoria.

Once these guidelines are adopted for use in Victoria they will be distributed widely to all public health service providers. It is anticipated that guideline distribution will take place in January 2011.

Yours sincerely
Lance Wallace
Executive Director
Hospital & Health Service Performance

For earlier correspondence refer to: Guidelines for hospitals.
See the current South Australian MCS Hospital Guidelines here 

August 2011 update: Success! Multiple chemical sensitivity: A guide for Victorian hospitals
I heard through ME/CFS Victoria that some other members were also approaching the Victorian government on this topic - it's brilliant to see the hard work that has been put in (it's no mean feat writing the shortest polite request to a member of parliament when you have ME/CFS, not to mention the research). I don't know who the other people are who were making the request as well, but I'm so thrilled that the government have acted on our requests.

Luke, I am your father...

Well it makes the noises...

I've had to get one of these to try & get myself through airports & on flights in the future (and anywhere else chemical dangers lurk). I know, it's a stunning piece isn't it. Just screams "accessorize!"

Of course the irony is that the gas mask is currently offgassing before I can actually wear it.

I did try it on for size yesterday. My cat was frightened of me. It took a while to convince him that no, nothing was trying to eat his mummy's face off. And yes, I had to say "Luke, I am your father". Not sure how that will go down at airport security though...

To be honest I really doubt anyone will even notice once I've got it on. They'll be like "Have you had your eyes done?" "Oh no, that's just my new gas mask. Fabulous isn't it?"

Pet Hates (I love animals)

Seriously, this is just an abbreviated rant about stuff I hate.

Car air fresheners. That sh*t gets all over your hair, your face, decolletage (or chest hair) and clothing. Throw out the fast food packets from the back seat. If your car is clean then what's the air freshener freshening? And if you car is dirty, clean it.

Fragranced loo paper. It's all going the same place. There's no more to be said about that.

Fragranced kitty litter. If your cat's litter box smells then it needs to be cleaned. If you need crystals that smell of forest flowers then your cat has serious digestive problems & you ought to consider taking him/her to a vet. Alternatively you're not changing the litter often enough.

Pesticides, herbicides. Name me one other word that ends in "cide" that you consider to be a good thing. Then invest $2 in a fly swat.

Fragranced panty liners. The person who invented these hates women. Who exactly is sniffing your crotch? And I really don't want to know why.

DIY pampering

Last time I went to a beauty salon (about 4 years ago) I ended up with an awful rash over my legs from the hot wax. The thing was I'd had the same reaction but worse the time before, and apparently so had the beauty therapist & several other of her clients. And yet there I was, back again.

Those of us with chemical sensitivity might not be able to get to the "beauty" salon but there's no reason we can't look hot as a meat pie that's been sitting in a pie warmer for 5 hours. We're still human, even if we're mostly the indoor, hermit type of human. And we all know beauty is on the inside (like guts & other important bits).

Meanwhile for when I get a bit vain, here are my favourites for do it yourself pampering:

Skin brushing/dry body brushing. I use a wood handled brush with cactus bristles from the Body Shop. Never thought I'd be caught doing that but it's really nice. And I reckon it definitely, definitely counts towards my daily exercise quota.

Bath with magnesium/epsom salts. Eases aches & pains. Not too hot as the heat can be energy sapping but just comfy & warm.

Mini pedicure. A pumice stone is brilliant for this, especially the rough areas such as heels. Trimmed & filed nails & I'm set. If I'm really lucky, someone else will do it for me :o)

Might not be able to manage a wax but I still have my tweezers for the eyebrows & in one of my bottom drawers is an epilator. Yes, they're exactly as scary as they sound, but you get used to them (sort of).

My absolute fave is the meditation, which I do loads off, mostly because I can't do loads of anything else, but also because it leaves me feeling sublime.

I do still have to skip the lipstick & I have to pop on a stunning little carbon filter face mask before I go out the door (usually to go about as far as a doctor's appointment). But beauty is a state of mind, and some days I am gorgeous as any magazine model! Or at least that meat pie in the pie warmer.

Smells funny

Ok.

So, I didn't want to have to say this straight out, but I don't know how to keep skirting around the issue so I'm just going to come out with it.

Your hair man. Seriously. It smells like fruit. I mean, it really smells like fruit. Apples in fact. Your hair smells like apples that have been peeled, and then someone put the apple peels on your head. I don't know about you, but I find that really kind of weird. Fruit. On your head. I'm just saying.

And the lemon clothes? What's with that? What are you - some kind of walking fruit salad? Your clothes. Yeah. They smell like lemons. Don't tell me you didn't notice. Sniff them. Go on. What did I tell you? Apples & now lemons.

Well then, there's only one thing left to say. I used the loo after you, and man, you better see a doctor 'cause I think you just shat a rainforest.

Guidelines for hospitals

Dear...

Thank you for your correspondence dated 8 August 2010 in relation to Multiple Chemical Sensitivities Guidelines for hospitals and for providing information on the recently published South Australian Multiple Chemical Sensitivities Guidelines for hospitals.

I am pleased to advise that the Department of Health will liaise with the South Australian health department for permission to use these guidelines and subsequently disseminate them widely to all our public health service providers.

Yours sincerely,
Hon Daniel Andrews MP
Minister for Health

Holiday Shopping

I've just been doing my shopping for Christmas (and yes, you're all getting what you got last year ;o), and watching my cat run around as though he has a flea, although I can assure you he does not, he just likes to think he does sometimes...likes to pretend he's a "Big Boy".

Buying gifts for someone who has chemical sensitivity is a bit like trying to find Richard Branson the perfect gift. Obviously toiletries are out (see the previous post). Foods are also highly awkward, chocolates and wine...tummy aches written all over them. Anything made of plastic, vinyl, synthetic is right out. And flowers - well they are a problem too as not only are they likely to have been well treated with pesticides but they contain their own chemicals which can trigger nasty reactions (ask me about gladioli - actually don't).

Books seem a good idea - and many people with sensitivity can manage a book. I can't as the inks & other chemicals cause me problems...audio books on the other hand have no such issue. DVDs can be ok as well, though they take a lot of cognitive energy & not everyone with chemical sensitivity can manage the concentration of a whole movie.

Here, we like things such as photographs or video (of you - rather than just of some random strangers).

Donations to charities are always fantastic:
http://www.aessra.org
http://www.mecfs-vic.org.au
http://www.anzmes.org.nz

You can also do what we often do & give people goats, ducks or chickens through agencies such as World Vision, Save the Children, Amnesty - whichever cause best suits your own beliefs & desires to make a difference in the world. It puts a smile on the face of the person receiving any gift such as this.

Vouchers for books, music (real or digital) are a good couple of options. Always usable.

In our home we are signed up to "The Cult of Less" - not as bad as it sounds :o) - we are cultivating having less "stuff" in our home. The stuff we do have we try to hang on to only the very practical. It's not that we don't like "stuff" - we do. It's just easier to dust this way & so many things are available digitally. Once I can convince my husband that he can use an eReader instead of having so many books I think we'll see a big reduction!

And if you're really into stuff then I guess just make sure it's organic, unbleached, recycled, whatever you like (sounds a bit like our toilet paper hmmm...Mum, I just had a brilliant idea for a gift for you :o).

Best of all you can send your love. 'Cause that's all we really need here.

And if you're buying for Richard Branson, skip the cufflinks this year, I'll bet what he'd really love is a toilet or a tap for drinking water (in a country where there's a scarcity of either).

If you have any other brilliant ideas on "gifts for the chemically challenged" post them here!

I love you just the way you smell

I love you just the way you smell. Please don't add perfume to anything. You aren't any cleaner for being perfumed...in fact I might start wondering what you're trying to hide :o).

Change your laundry detergent. Next time you visit the super pick out a "sensitive" version. If you use Persil choose "Persil Sensitive". If you use Omo use "Omo Sensitive". Another good one is Planet Ark's Aware - Sensitive version of course. Seriously, it will make all the difference to me. Maybe the difference between whether I can have you visit or not.

Shampoo and Conditioner (and bodywash/soap etc). Look for ones that say "fragrance free". Skip the ones that say "organic ingredients" (some of the ingredients are, some aren't - lucky dip). And to be honest, skip the Redken, Sunsilk, Pantene, whatever & get something lovely for yourself like Al'chemy Very Gentle Unscented Shampoo & Conditioner. It's beautiful stuff. If you must use fragranced products please don't wash your hair just before you come over. Give it a day or two to "offgass". It needs it.

Deodorant. This is going to sound gross, but you don't need it. I prefer the smell of B.O. to the smell of Lynx or Impulse (and if you ask you'll find most people hate those). Please, please don't buy spray on deodorants. Ever. They are the worst. I understand if you can't give up deodorant, but look for a roll on or stick, maybe a hypoallergenic or "Mitchum Unscented".

Have a quick glance over the ingredients in your products - particularly the ones I've just mentioned. If they say "fragrance", whether it's "natural" or other, please don't use it around or near me.

Covered in chemicals

One day people will look back at our time & wonder what on earth we were thinking using such toxic chemicals on our bodies & in our homes, much the same as we look back today & wonder what on earth brought people to using lead face powder.

The Romans knew about lead's effects. Didn't stop them using it. Nor did it deter the Europeans in the Middle Ages, Renaissance Italians or the Elizabethan English. Seems we're not all that quick on the uptake.

Here, today, in the name of cleanliness/vanity we scrub our skins with soaps containing known carcinogens, irritants & endocrine (hormone) disruptors. We put aluminium under our arms where the skin is at it's thinnest, and where it can be absorbed the most readily. Of course we stopped cooking with aluminium years ago - Alzheimers - or did you forget? :o)

We pour potions over our bodies, moisturisers, ointments, perfumes. Our scalp - not too far from our precious brain, is often daily scrubbed with these chemicals & then sprayed, gelled or fudged (Are you are going to eat that fudge? I wouldn't recommend it).

That's not enough of course, we also need to spray & perfume our house - not just for vanity of course, but we don't want any bugs about, so bring out the pesticides & spray them, lay them or sprinkle liberally. After all it's only for pests. Do you know what a flea feels like after a dose? I do. I'm guessing it's the same for the flies and all of the other creepies, crawlies, wrigglies & flappies.

I actually do know what this feels like. Balance goes out the window & confusion reigns supreme. Walk in a straight line? Forget it, not going to happen. Who am I where am I why do I feel so odd? Why do my hands shake? Why does my body feel so surreal?

I won't even begin on what the other chemicals are doing to me. We've cocooned ourselves in formaldehyde, we've created illnesses in children we design pills to treat. Try me on RED. I'll be the same as any ADHD kindergartener. Is this a pysch diagnosis? Maybe. That's what they taught at uni. No-one mentioned RED or YELLOW or BLUE.

We're eating it, drinking it, draped in it, consuming it, absorbing it, breathing it. Right now.

The Waiting Room Story

One day, while still fairly new to wearing my carbon filter masks in public, I went to a doctor's appointment. As I sat with my husband in the waiting room a small child entered with their mother. Quietly while they sat the child asked her mum "mummy, why is that lady wearing a mask?". Her mother answered "it's because she is very sick".

Shortly after this event another small child entered with his father & as they sat in the waiting room the same question appeared on his lips. "Daddy, why is that lady wearing a mask?". "Because she doesn't want to spread germs" was "Daddy's" answer. Under my breath, so I thought and unpremeditated to my husband: "It's because I'm tooooo ugly".

Father of second small child cracked up laughing. I could have sworn I said it ever so softly.

:o)

;o)

Course it's me ya nongle.
xx

Thank you DDA

I'm so pleased this country has a Disability Discrimination Act. Once this was pointed out to the clinic mentioned in my last blog, the second letter I received was significantly more accommodating. I didn't expect as much as they offered. But am very happy. I am about as protected as I could have hoped from the chemicals that were making me sick, while still visiting a public place.

1. I have a separate room to wait in away from the general populace - it is well ventilated & I can sit outside on the veranda
2. The clinic I now attend has better ventilation & I can still see my own GP
3. I can leave straight after & pay by phone & not wait at perfumed reception to pay
4. The air perfume dispenser will be removed from one toilet

Well done to them for coming through.

Re: Air Fresheners

We have reviewed your requests re air fresheners and perfumes.

Our clinic is designed to provide the best experience for the majority of our patients and as such we will not be making any changes.

Yours sincerely...

How are you...?

Today my husband asked me a series of "How are you doing?" questions...

How are you doing physically? - horizontal
How are you numerically? - in two minds...
How are chronologically? - time will tell
How are you genetically? - superior
How are you carteographically? - located
How are you epistemologically? - uncertain
How are you meteorologically? - temperate

Awareness Week

Ink Pink has been busy. She has sent out letters & information leaflets to all of her nearest & dearest. She has sent them to pollies & local media outlets. She has also written various letters to editors. She's a bit tired & hopes her small efforts make a difference to someone somewhere.

Smells from my apartment

Burnt toast in the mornings or anytime of day
The lady in number four's wet washing on the line
everyone's smells different but you can tell her's anytime
Cigarette smoke, barbeque, onions, perfume
Solvents the workmen use on the building two doors down
Wet greenery, damp Earth
Exhaust fumes
Second hand perfume on the suit of my husband as he arrives from work and heads to the "decontamination room" (the second bedroom)
And straight into the shower
Where I sit on the side of the bath while he showers and we talk about our days.

Glum

Ink Pink is sad. She realises that "at the age of thirty[something] she will never drive through Paris in a sports car with the warm wind in her hair". She's definitely not into jumping of rooves though. She needs to listen to the three little birds who tell her "every little thing is gonna be alright". So that's what she is doing now.