4 Disability Assistive Devices I need to Survive

My top 4 Assistive Devices for Mould Illness (CIRS) and Medical Conditions with Chemical Sensitivity as a Symptom!

(Note this page has a formatting issue that has removed my paragraph breaks so it’s in the naughty chair until I can fix it! This always happens when I embed Instagram posts. If you have a solution or know why this happens please leave a comment below or call me.)

Anybody who thinks that people who have medical conditions where their health is impacted on via chemical-irritants are living in the wrong era have it mixed up: living with modern technology makes our lives easier. The mythology that exists that we just can’t cope with the modern world and chemicals—which lets face it are everywhere and in everything—is exactly that: a myth. H20 is a chemical. We need chemicals, we need electricity for our assertive devices and we need devices that can make life living with a chronic illness, disease or other medical condition a whole lot easier. If someone has environmental illness it doesn’t mean they belong in the 1900s’ with all natural pure stuff, in a hut living a paleo lifestyle. No, it means that we need chemical-based extensibly helpful assistive devices like Air Purifiers, Face masks, Oxygen masks and tanks and, my personal favourite: a dehumidifier! Here is a listicle of my top 4!:

My Oxygen Tanks from BOC Gases

These make such a difference to my life that I cannot imagine living without them—until I get better and don’t need them, that is. I use 1 large tank and 1 medium size tank approximately every ten days. At the moment my carer pays for them, but will be applying for Government assistance soon. The biggest difference they make are when it’s smokey outside yet the smoke makes it’s way inside and into my lungs. For the last 14 years I’ve suffered upper respiratory symptoms from inhalation of woodsmoke coming from neighbours’ chimneys. Luckily for me, I live in a holiday area so it’s only terribly bad on the weekends when the terrorists holiday makers come up.

They’re also useful for when someone nearby runs diesel trucks, mows the lawn using old lawnmowers that spew out two-stroke fuel, or run their boat motors after a day of fishing while they clean it; petrochemicals knock me out for the rest of the day at the moment.

The oxygen therapy was prescribed by my doctor to be used 2 times a day for 20 minutes and also for 20 minutes after an exposure to chemical-irritants and natural substances that cause pain, long-lasting symptoms and further sensitisation—as is the case with mould exposure. Actually, I’ve been using oxygen whenever I write and also while on the phone and sometimes even while making a video because the oxygen allows my brain to work as normal. The last 6 months have seen a huge decline in cognitive skills, short-term memory and emotional regulation in times of chemical exposure. Stress just makes it ten-fold, and the anticipation of all of these can cause anxiety, which I’ve not experienced before at such a high level. 

Oxygen therapy has helped this CIRS symptom the most: It’s like feeling completely lost in an unfamiliar place even though you know you are somewhere where you’ve been a 1000 times before. If this place is on a freeway, it’s terribly frightening.

  xxxI can empathise greatly with those who suffer Alzheimers with dementia symptoms, which, over a 6 week period, is what I thought was happening to me before I saw Dr Mark Donohoe and had the Neuroquant MRI, which allowed the diagnosis of CIRS (Mould Illness) to come about so quickly. Hence being put on oxygen. (It’s also useful for doing yoga deep breathing exercises.

On some days, I can get through a 40-45 minute session of yoga with Banana Blondie 108 She has some wonderful chest opening exercises in her ‘Heart Chakra’ Yoga series. And for $10 US a month, it’s great value. You can find these classes at Thriving Plant Based There is free yoga available also. I have a post coming up on the value of the Chakra series with my lovely, gifted virtual yoga teacher!)


My AusClimate Dehumidifier

I’ve blogged before about my AusClimate dehumidifier in the post titled, This One Sure Thing: My AusClimate Dehumidifier, however, even more so than my next device, an air-filter/purifier, due to the breathing issues I have with indoor and outdoor moulds, keeping the relative humidity low is a must for comfortable breathing. There is no point having oxygen to plug into my airways if the air is full of outdoor moulds; or moulds from the water damaged ceiling in the room sealed off from my main living area. When I moved in I was told by my real estate rentals manager that the ceiling had been fixed as it was something I was concerned about when I saw the tell tale water stains on the ceiling. I believed my estate agent, and I still do.

However, a year or so after moving in it began leaking after a terrible storm. The owners of the property and the estate agent sent out someone to replace the roof; but even before that happened I was on the forum of AESSRA asking about dehumidifiers. I didn’t like what I heard so I looked on the internet under the keywords ‘mould’, ‘dehumidifiers’ and ‘mould remediation’; and that was how I came to find AusClimate. Not only was I given excellent advice on how to use my machine, like:

  • running it for 3 whole days to remove all the water from the indoor environment;
  • keep the dust mite count down (the perfect food for mould!) by vacuuming regularly; and using micro cloths to pick up dust without spreading it;
  • advice on how to keep my home mould free (so long as the water leaks had been fixed—and, with the new roof the owners of the rental put over my head, they were, for the time being, until now with this new 3rd leak. Stain over stain on the old chipboard/particle board ceiling.
  • this machine has saved my lungs a huge amount of pain because not only has the roof leaked again (which I will be blogging about in another post where I compare the AusClimate dehumidifier to the Delonghi Dehumidifier, which I have running 24/7 in the water damaged room: it’s that inefficient. And my ERMI results.) but I’ve had to put up with even more damp air
  • at least I have my AusClimate 35 litre machine to keep my living space dry, therefore, hopefully, no mould can grow on my possessions? I don’t know. If you have the answer to this, please leave it in the comments below…

But whenever it rains outside, I whack on the dehumidifier! This stops my lower lungs from hurting from the dampness in the air if I didn’t have it running. (I don’t know why my lower lungs hurt when I breathe in damp, cold or smokey air but my GP and Dr Donohoe are looking into it via an x-ray and Spirometry test, which I’m doing next week along with my tests for the Biotoxins and other bacteria shown up in my MRI.)

My living area is around 45 square metres, making up the lounge, dining room and kitchen (that’s where my bedroom, office, gym and dining area are). I never run it for longer than 5-6 hours at a time; however, once a month I run it for a whole day or night when I am out of the house. It’s so powerful that if I leave it on for too long, I can feel my eyes start to dry out, which is just a sign to turn it off. It’s winter here in Melbourne and not only do I need to suck up the cold damp air with the Dehumidifiers, I need to dry my washing inside because if I leave it outside in the rain, it gets mildewy and even worse, reeks of the chemical-irritants in woodsmoke. I have made a video about using this machine to dry my clothes, which you can watch below. 

(If you cannot watch it, basically it just shows how I hang my clothing and cleaning cloths (dusters) on a large portable clothes hanger overnight with the AusClimate running. By morning my clothing is clean, fresh and dry ready to be put away.)

xxx I’ve also made a video on how I clean it once a month. Ergo, I intend to make a video on how we clean the whole unit, fully, once or twice a year. I have heard stories of other units going mouldy—I mean they do suck up water and dust—so do need to be maintained just like any other household device. Watch the video below, and then we shall move onto clean air!

[insert video 2: How to thoroughly clean your Dehumidifier]
[Insert Video 3 on how to stop would smoke coming inside while taking a shower]

My 3M Filter Mask and Cotton Scarf

I’ve blogged about it and made a video about how useful the 3M mask has been to me over the years. 14 to be exact! Although, it used to give me a lot of freedom, it’s not longer useful unless it’s for fleeting exposures like going to the letterbox or stepping outside for a bit. When I go out I now use it with the oxygen nasal tubes underneath and it works like a charm. Amazingly so. I buy my masks from AESSRA (The Allergy and Environmental Sensitivity, Support and Research Association)


My InovaAir Purifier (Air Filter)

In 2004 I rented an Austin Air purifier to see if it worked for me. I had it two weeks and realised I needed one; therefore, I took out a small bank loan, immediately buying one. The InovaAir Purifier is almost the same design just more modern and sleek looking. It’s on wheels so can me moved about; has the reputation of cleaning the air of a small to decent size room within 15-20 minutes so long as its clean to begin with. For example: your house has clean air in it after airing it throughout a fresh sunny day, evening comes and you forget to close up the house, allowing woodsmoke from a neighbour’s backyard fire pit or woodfire chimney to get inside your house. The air is no longer comfortable to breathe on a physical level, naturally, you close up your house, turning on your InnovaAir or Austin Air Purifier onto high. Within 15 minutes your room is back to being clean again. This may not take away the inflammation or headache or asthma caused but it will stop any more smoke from impacting on your health.

(There are some other tips and tricks I have ready in another draft post that I’ll try and post before winter rudely sets in but for now, know that I go through a lot of painters’ masking tape (it’s less sticky and doesn’t pull paintwork off) and cotton wool blocking up holes where drafts pull the chimney smoke in.)

Where I get my Oxygen from: BOC Homecare (via prescription)

Where I bought my AusClimate Dehumidifier from: AusClimate online

Where I but my 3M Masks: AESSRA

Where I bought my InovaAir Purifier from: InovaAir online

Information on woodsmoke, rules for chimneys and Parliament Enquiries into the use of them: http://woodsmoke.3sc.net

Lung Association and Woodsmoke: Air Quality and Woodsmoke: http://lungfoundation.com.au/lung-health/air-quality-and-woodsmoke/

(image art by Michellina van Loder and Pixabay)

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.

The Butterfly Effect

The Butterfly Effect: Finding Sanctuary in Butterfly Town, USA, By Jennifer Lunden was a piece of creative nonfiction that I chose to present to my Creative Nonfiction class early in 2014, during the last year of my Diploma at Victoria University (VU).

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My Creative Nonfiction teacher, the wonderful Michelle Fincke, read the following analysis of ‘The Butterfly Effect’ out in class. (The 3M mask, I sometimes have to wear to protect my airways from fragrances, solvents and petrochemicals, prevented me from being able to read this out loud due to lack of oxygen, compounding already existing upper respiratory health problems; these are (head pains, sinus pain, shortness of breath) issues that happen while talking for extended periods of time while wearing the cloistering thing!)

This particular Professional Writing and Editing class was early on in the semester, and it was only during the first two weeks that I had to suffer wearing a mask for the whole class: after that short, but intense, time, this wonderful and compassionate teacher managed to persuade and gain the understudying of my fellow classmates as to why and how they could help accommodate and include me in classes. For the rest of the semester I attended classes without wearing a mask (I still wore it in my car and into the building), and I was able to read out my own work to the class. (Having the air purifiers running in the classroom also helped! As did a tick sheet, which allowed me to assess the air without having to breath it in to do so.)

Here is the written analysis of Lunden’s piece that was read out by Michelle on my behalf:

One of the reasons that I, particularly, like The Butterfly Effect: Finding Sanctuary in Butterfly Town, USA is because it’s written by the writer, Jennifer Lunden, who just happens to have the same condition that I have; although over in the US, it’s called Multiple Chemical Sensitivity (MCS); another reason is it’s about the Monarch Butterflies and their habitat, our Earth. Lunden manages to weave both topics seamlessly into this wonderfully written work of creative nonfiction.

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It’s probably my all-time favourite creative nonfiction piece of another writer’s work. Ever.

The story reads like fiction because Lunden uses two timelines, the first is of her as a young girl, aged 9, where she is fascinated with Monarch caterpillars and their metamorphism into butterflies, and the second is of her as an adult diagnosed with Multiple Chemical Sensitivities, researching the Monarchs, and weaving into the story her analysis that many people with Multiple Chemical Sensitivity are unable to find safe habitats—as is also the case for many of the Monarch butterflies. The story is ultimately about saving the butterflies and finding solutions to the population’s decline.

One literary device used in this piece is the tactic of switching point of view (POV) throughout: mostly, it’s written in first person POV; ergo, there are two parts where it’s written in third person POV. After careful analysis of the text, I think these are both about a young girl and the way she sees the beauty of the butterflies, and her relationship with them. It’s not directly clear if the girl is Lunden, herself, or not, but personally, as a reader, I felt that it most certainly is. This switching about of POVs is also a literary device utilised by some savvy creative nonfiction writers to make their work more interesting: it creates a greater emotional connection with the reader, allowing them to see and feel events from another’s perspective.

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I also enjoyed the way she has written about what it’s like to be forced to wear a mask if you have this condition and need to attempt to partake in normal life. (I’ve included two examples below.) And, during undertaking the research for this story, even though Lunden knows the journey might make her ill, she attempts it anyway, and writes about it. I can relate to this in so many ways:

it’s like our passion carries more power than our illness (sometimes; and if only for a while until we get knocked flat, once again).

It’s obvious that this is creative nonfiction because it’s factual but also something Lunden is enthusiastic about… Not only is it written using wonderful imagery and figurative language such as metaphors, similes and analogies, but also includes facts, research and quotes from interviews. These all make for mind-riveting reading.  I take an awesome amount of inspiration from all of this; but, at the same time, I feel deeply despondent that it’s almost a guarantee that she will, and does, have her health intruded on by chemical exposures impacting upon her immune system, just from going out into the world to pursue her interest: writing about the butterflies.

I especially enjoyed the use of metaphors throughout the piece. Such as this example: “They are nature’s stained-glass windows, flying high between us and the sun.” to describe the butterflies and the pattern on their wings. As a reader, for me, this creates the most intensely beautiful imagery: I feel in touch with the creatures even though I’m [at the time or writing this] enclosed in a tiny foil-lined room.

“They are nature’s stained-glass windows, flying high between us and the sun.”

Rightfully so, Lunden’s story won the 2012 Pushcart Prize for Creative Non Fiction:

“The Pushcart Prize: Best of the Small Presses series, published every year since 1976, is the most honored literary project in America.”

The Butterfly Effect: Finding Sanctuary in Butterfly Town, USA

By Jennifer Lunden

Some Extracts from Lunden’s piece (Note: the whole story is linked to at the end of this post):

[Metamorphosis]

“It was cold in Maine. Cold. And the snow was heaped in dirty piles on the side of the road. And the sidewalks were icy. And it got dark at 4:30 in the afternoon.

It was the dead of winter, and I wanted out, so I flew to California—to Pacific Grove, aka Butterfly Town, USA, to see the monarchs. It was a journey home, really, though I had never been there.

I grew up in a box-shaped house on a well-manicured lawn in the suburbs of a mid-sized Canadian city in Ontario. Across the road and abutting the river was a patch of city land, untended, wild, a field of tall grasses flecked with milkweed and Queen Anne’s lace. There, I discovered my first monarch caterpillar. I was 9 years old, and I had never seen anything like it. Boldly ringed in concentric stripes—black, yellow and white—it was stretched out on a milkweed leaf, eating. I plucked it off, held it in my hand, touched it with my fingers. Its skin was smooth, leathery. It did not roll up in a ball. It did not seem afraid. Docile. I broke off the milkweed near the top and carried my find home.

I scoured the fields in search of more. I filled jars with milkweed and caterpillars. I pounded nail holes in the lids. I spent hours watching them.

They ate voraciously. I could see their mandibles working. I could see the chunks they took out of the leaves, bite by bite. They grew fast, and before I knew it, they were climbing to the lids of their jars. They spun small mounds of silk and attached themselves to the mounds and hung there in the shapes of J’s for a long, long time. And then, when the moment was right, they split the skins on their backs, wrestled with themselves and turned inside-out, and, suddenly, there they were, something wholly different: an emerald green chrysalis with little golden flecks and a gold crown.

Miraculous.

They would hang for days, for what seemed like forever, and nothing changed. And then one day, I could see the darkening. The butterfly was forming. Soon, I could see the outline of a wing. The orange. The black veins. The white polka dots.

The waiting for what would come next. … It seemed interminable.

I didn’t want to miss it.”

Example one by Jennifer Lunden:

[Habitat]

“I have a carbon filter mask. If I were to give it a name, I think it would have a male name. Tom. Something strong and protective.

My mask is battleship gray. It shields me from perfumes and colognes, air fresheners, cleaning products, pesticides, fumes from fresh paint. I carry it in a baggie in my purse, and I take it out now, on this airplane, and strap it on.

I wear it when I can feel the headache coming on. When it hits, it feels as though my brain has swollen inside the cradle of my scalp. A fog rolls in. My capacity to juggle a number of thoughts at once, an ability most people take for granted, dwindles. It alarms me when this happens, when my brain gives way.

I have it easy compared to some people. I know people who suffer seizures when exposed to chemicals. Closed airways, joint and muscle pain, nausea, insomnia, disabling fatigue. Panic attacks, mood swings. I know people who could never hazard the bad air on planes. Some of them live in ceramic trailers in the deserts of Arizona. Some of them are homeless; they live in their cars or tents. They can’t find anyplace safe to breathe. They can’t find habitat.

We call ourselves “canaries in the coal mine.” We have multiple-chemical sensitivity, and our numbers are growing.”

Example two by Jennifer Lunden

[Breathing]

“My other mask—my special occasion mask—is a flowery, lacy affair, skin-toned, with a little rose appliqué by its left strap. Feminine. Or as feminine as a fume-deterring mask can be.

It’s not any better, really, this flowery, lacy mask. What I really want is a mask bearing an appliquéd symbol that stands for “your toxic products are making me sick.” It would be nice if the symbol could point out, too, that 62,000 chemicals used in the United States have never been tested for safety. That we are human guinea pigs. That while we think our government would surely protect us from egregious toxins, we are wrong.

But what would that symbol look like?

If I have to wear something that makes me stand out in a crowd, I’d rather it not be something that stands for “crazy” (think Michael Jackson) or “communicable” (think SARS). I want people to know that this mask isn’t about me so much as it is about us.”

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I love the way that Lunden has drawn attention to the Monarch Butterflies while also showing how people sensitive to chemicals are intrinsically linked to what is happening to our precious ecosystem and its inhabitants. Of course, when I read about her experience with the mask, it blew my mind: here is a person going through what I am and she is (or was at the time) studying creative nonfiction!

When my teacher read this out to the class, I could tell she really liked it because she read it with such enthusiasm, and she even said to me that I had chosen a great piece because of the content and my situation: Getting a whole class to go fragrance free when the school is yet to implement a fragrance-free policy (yet!) is no easy task—for the teacher or the student!

However, I truly believe that having this particular author’s work on this particular subject read out to the class as my example of a work of creative nonfiction helped lay the foundation for getting that large group of students to help me. It surely helped cement in the understanding of why it was so important that students not wear chemical-laden products to class. And, yes, it worked!

To Jennifer Lunden, Michelle Fincke, my fellow students and VU, if you ever read this post, thank you: all of you have enriched my life in so many ways. Yay! I have a Diploma. (I can’t stop saying this; and I still feel like I’m dreaming.)

Love Michellina and the world’s Butterflies xo

More About Jennifer Lunden

One Canary Sings

Read Jennifer Lunden’s Blog: One Canary Sings ~ Notes from an Industrialised Body

Read all of ‘The Butterfly Effect: Finding Sanctuary in Butterfly Town, USA‘ ~ by Jennifer Lunden

Creative Nonfiction.org: Creative Nonfiction ~ True Stories Told Well

Jennifer Lunden: I Know the Truth, I Know it In My Body

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.

The Thing about Vaginas

Apparently, embracing the practice of dancing to the cycle of the moon with blue circles painted on our pink bits is going to become de rigueur, even cool. One day. Or at least, something like that will help celebrate the event of women getting their periods. Okay, maybe not the paint, or even the moon cycle, for that matter, but the celebration of menstruation for the wonderful thing that it is. Oh, and the ‘idea’ that we have vaginas, menstruation blood, and discharge. A celebration I tell you! All right, not even a friggen celebration then—just a general acceptance of it will suffice.

And advertising about them? Well, this one I saw on television last night… suggests general acceptance. Except for the HooHar caused by the use of the real word for our ‘MooHoo’: Did Carefree expect this reaction when they—in the event of getting us chicks to buy feminine hygiene products more than just once a month—released this television add with a naked woman sprouting on about her ‘vagina’ and the discharge that flows from said vagina:

“Even that bit of discharge… is our body working to keep the vagina healthy.”

She said, while standing naked, kind off hiding behind a bloom of fake white flowers. Weird! But weirder than hiding behind flowers:

According to Jezabel’s, ‘Public Scandalized by Ad Claiming Woman Have Vaginas and Experience Discharge’:

“A spokesperson from the Advertising Standards Bureau told ninemsn that the ad started receiving complaints as soon as it launched last night. What’s more depressing — that some people have nothing better to do than call in complaints about ads that barely have any views on YouTube yet, or that the word “vagina” is still considered controversial and “discharge” is still considered abnormal even within the context of trying to sell women products for their vaginas?”

Err… didn’t those ring-up-TV-stations-and-complain-type of people not see the Lynx ‘Dirty balls’ add? (Look, if the guys had been washing their own balls in fragrance chemicals (instead of Sophie Monk doing if for them)—maybe it wouldn’t be so… offensive. Apart from the chemical sensitivity, allergy and asthma inducing synthetic chemicals on those things… I mean, you wouldn’t want to get too close—talk about offensive… ) So, unlike the DB add, is this add, using the actual names for female human anatomy and, in an actual factual sense, really offensive? Rhetorically speaking of course!

But back to this badvertising… We all know/or have heard of the guy who gets squeamish at the mention of periods, monthlies, tampons, vaginas. Or was it just my high school that had guys like him? Does anyone remember the way he couldn’t use the real terminology, only his—wait for it—‘down there’ talk; but he was fine, almost proud, in his knowledge, and ability to throw around words like c*nt, pussy, and phrases like ‘he/she’s on her rags’ (usually as a euphemism for ‘I can’t get my way with you’, so I’ll align you with the status of a woman who is menstruating (even if you’re male—especially if you’re male)). Sexist. Much, I’ll say…

Well, by the sounds of it, this type of school yard mentality has grown up, and has been ringing the Advertising Standards Bureau, complaining about Carefree using the word vagina—probably while emitting Lynx fumes from ‘down there’!

If you have not seen the *shockingly offensive* add that caused the HooHar about the HooHoos, then check out the YouTube clip below.

You know… *Down there*…

 

(MoonImageSource: http://www.freeimages.co.uk)

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.

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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