I wrote about how at Xmas dinner we made Twice Baked Spaghetti Squash, well within a few minutes of clearing away the table, I was in bed by five pm. We were supposed to drive the 7 minutes it takes to get to our block. revelling in the idea that I’ll be in a safe home soon and my boyfriend, Dan, will be under less pressure and stress trying to solve issues that are out of our control right now:
Dan, bless him, when he comes to stay he thinks he can run about controlling the air. He actually thinks he can do that. But that’s okay; I used to think that too.
If you drive the 50 seconds it takes to get to the beaches that surround two sides of my rental property, you’ll see a heap of boats. If you go outside on a sunny day, you’ll hear whine of jet-skis and the “whop whop” as they hit down on the waves, but mostly, you’ll just smell—and feel if you have petrochemical sensitivities—two-stroke boat fuel, similar to lawnmowers… en masse.
Am I under attack? I try not to look at it like that.
Because this holiday season, too, shall pass.
Not quick enough for me. And so it’s been for the last 12 years, since I became chemically sensitive and have lived in two seaside towns: it’s quiet, the air’s fresh for most of the year, but come school holidays, especially the Xmas ones, it’s like living in the city but kind of worse because of the non-stop BBQs and gatherings that, noisy as they are, I wouldn’t mind if the air coming from them didn’t impact my health like this:
I can only open my house early in the morning or I’ll be sick in bed all day from chemical exposure, mostly petrol but fragrances too. There is a pub about 30 houses down my street, and when they have events, which is nearly everyday lately, and I go outside on my deck, the air is so thick with fragrance chemicals I can taste them.
Within 10 minutes my tongue is coated with the taste of sunscreens and shampoos.
One of my neighbours refuses to text me when he’s going to mow so sometimes I get caught with my windows open. Well, that day is always a wipe-out! Luckily, this is a once a month event so I’m not caught out everyday.
However, the fumes in general make life a misery. If it rains, it’s worse because I can’t run my air conditioner due to the dampness on the concrete underneath the outdoor converter, making it’s way through the vents.
I run two Inova Air Purifiers. One AusClimate Dehumidifier, and I’m soon to try using a bottle of oxygen, (I’ll let you know how the oxygen therapy goes.) I also try to keep the air conditioning on. Yeah, my bill cost a bomb but I do get a ‘cooling concession’ from the Australian Government.
My eyes and nose dry out as it hurts to inhale, and I retreat back inside, feeling the energy drain out of me. Consequently, I’m spending my time inside with the blinds down, the air-conditioning on and doing yoga. If I don’t go outside, mostly, if people don’t burn shit in their fucking backyard fire-pits (mostly at night. And on fire ban days/evenings!), I don’t’ get sick. This means my head is clear. (The Australian Government can be selfish when it comes to industry lobby and PM-2.5 particles aka woodsmoke. They know we and many others who suffer respiratory health conditions suffer greatly with woodsmoke; and if we can’t afford homes that are sealed well then that impacts on quality of life.
I wrote about how exhausted I was just wrapping our house in aluminium building wrap and then plastic for the upstairs.
The summer is over but my health has not bounced back, I can taste and smell mildew on all of my fruit and vegetables. I am waiting on some mould drops from my Immunologist.
(MCS?) Hermit-like Existence
(As written in my ‘Symptom Update Notes’ emailed to my doctor for our last appointment, and now shared with you.)
Recovery time: It takes 3 days to a week to recover from one car trip. This is spent in bed.
My neck hurts when I move it; my glands on either side of my neck are swollen.
My head aches when I move it: it’s like my brain feels like jelly that hurts when it moves. Light hurts my eyes.
My nose, sinus and eyes pulsate with pain and I get bruising around my eye sockets after 2-3 days of this.
I’m cold, I spend all this time closed up in the house with the blinds down and air conditioning on.
I also run two Inova Air filters and a dehumidifier when it rains.
I am cold all the time from being in this controlled environment with air blowing.
The beach is 2 minutes walk away yet I can’t go there because I get even sicker from people’s fragrances and boat fumes.
I also get constipated after exposure dry eyes, thirsty and I drink so much water that I am always going to the toilet yet still thirsty; my skin is dry.
My body holds fluid or something because I can put on 2-4 kgs overnight. Dan has seen this happen and even he says it’s not possible to put weight on and lose it like that over a matter of days.
Note: My car has a water leak around the sunroof.
Also as written to my treating Allergist, Immunologist this February 2016”
Exhaustion: most of the time: I am sick and tired all the time. So tired that I can’t continue standing when it hits; whereas, back in September 2015 it was just feeling tired with heavy arms, no cognitive abilities and nausea. Now it is my whole body that is heavy and I have to lie down. I have to go to bed in the afternoons quite often, and there’s no notable chemical inhalant exposure to note at the time: I just run out of energy completely. I rely on 3 cups of coffee just to get out of bed in the mornings. If I sit in bed and write on my laptop I can function on a cognitive level (if I have not had any exposures for about a week previously), however, if I get up and do yoga or chores, I am flat by 11 am – 2 pm. I am lucky if I get a day or two where I can do tasks that involve moving my body like cooking and washing. This is wearing my relationship down cause Dan has to do all the chores.
He has even had to, after insisting on it, wash and dry my hair after going to the doctors in the city in the car. This is ridiculous, I am 46 years old; and I’ve always been physically fit.
Dear Readers: I’m not very good at accepting not being well. It’s something I have to work on, or do I? Do I keep fighting, asking questions? Or just accept this as my state of health?
On a positive, I have my cognitive abilities: Bring on the yoga and the time to write!
More
The Victorian Governments Better Health Channel: Wood fires and breathing problems
Washington Government: How Woodsmoke Harms Your Health
Asthma Australia: How Woodsmoke Harms your Health
The Conversation: Traffic pollution and wood smoke worsens asthma in adults
It’s not clear how I got so much lead and cadmium in my system. Perhaps from refinishing old furniture, but that was such a long time ago. I never smoked and was not exposed to much second-hand to justify thse levels. I think probably my liver is not detoxing properly, but why is still a mystery. Could mycotoxins have messed up my liver function?
I was positively exposed to black and other types of moulds in the past. It was removed from our basement last fall, and the problem was limited to a small patch, but it was there for a long time and apparently it doesn’t take a lot to get sick. I don’t know if you read the following medical review on molds and mycotoxins, it does a good job of explaining the link between mold exposure and MCS: http://www.hindawi.com/journals/tswj/2013/767482/
Thanks for the tip about Richie Shoemaker, I will look him up.
Take care ?
Thank you so much, Danielle. That paper is informing and certainly eye opening. I lived in WDB for 3 years. My liver function tests: 1 in 2007 (2 years before I recovered) and 1 in 2012 (2 years after living in a WDB–the one with the wet concrete slab) both showed opposite results each time. First one showed that the caffeine part wasn’t working while the other showed the opposite pathway to be not functioning. It seems that it’s a combination of mould and formaldehyde outgassing in this house. There is a lot of MDF in this house. I am thinking of doing swiffer testing to see if this rental has mould values low enough for me to start treatment because there is no point, apparently, if the levels are not low enough. If I do this I’ll blog about it. I’ll try to blog about my treatments that a Shoemaker but with a different doctor, not one trained by him though: they’re all booked out. I’m glad you picked yourself up. I feel like shit today, so I am just going to walk on the oxygen and clear my head, then try and install a Facebook comments plugin… Amazing what we can do when our heads are clear.
Hi Michellina,
It makes me sad to read of all your troubles. I am not nearly as ill as you are, yet I realize I am not out of the woods. Some of my symptoms to chemical exposures were less intense the past two months (like the stomach cramps and diarrhea). But these days, chemical exposures seem to wear me down and I will feel very sleepy and cold. Mind you, it’s winter in this hemisphere, and we had some brutal weather shifts, going from -39 Celsius windchills, to snow flurries turning to rain with above freezing point temperatures. Each time, the body tries to adjust… these types of rapid and extreme shifts in temperatures are what we can expect from global warming.
Through all this, I feel very lucky to have found you and your blog, because I have felt very isolated since this all started 2-3 years ago. I spent this past Fall outraged, desperate and crying over my ability to enjoy modern conveniences and pleasures being limited a little more each day. But reading your stories has helped me in several ways: it helped me understand what is happening to me; to realize that I have to get past the fact that no doctor is going to diagnose me, whose services are covered by my provincial medical insurance, and that must dish out thousands $ out of my own pocket, without any guarantee that any of it will be covered by either of our two private medical insurances. It has also helped me to realize that although I always held the belief, with reason, that the human body has everything it needs to self-regulate and heal itself (and therefore I don’t need to take pills and supplements), my body just isn’t able to do that right now and does need the extra help. Your stories also helped me to understand that if my ND says I need to bring out the heavy artillery (nebulized glutathione, silver, etc.), now is not the time to give up, even though the health routine is starting to weigh on my already reduced ability to enjoy life.
The test results came in last week: I have black mould mycotoxins in my system, whichs probably to blame for my count for good gut flora is low to nil, and for my liver not working properly, which probably explains why cadmium and lead having accumulated over time (3X above general population average in the case of lead). No wonder my attention and short term memory are so bad… and the good news is I now have my MCS diagnosis, which should help me obtain some work accommodations.
So although I just feel like giving up, I will just pick myself up and turn on the nebulizer… Thank you for your courage and tenacity… If you can do it, so can I ?
Danielle, I am glad my post help you. I don’t intend to give medical advice, I’m more likely to give comedic relief by mocking it perhaps?! However, it’s great that by sharing my pain I can help others. I have no answers but plenty of questions.
As I was reading your comment, I was wondering if you have had mould exposure… and yes, I am finding that if I want any medical intervention I need to pay out of pocket. Doctors of Environmental Medicine are often mocked by the anti-wellness inc brigade as well as the Woo-Woo mob. We just have to do right by our own bodies and trust our instincts, I guess.
Richie Shoemaker has a lot of information on mould recovery so it’s an avenue I am exploring at the moment. So i hope to publish some helpful research on this soon.
I wonder how you managed to get exposed to lead? Do you know? I think this might be a huge indicator showing you how you can get well again. It makes me happy you have the Multiple Chemical Sensitivity (MCS) diagnosis, as this will help you immensely within the disability sector and gaining workplace accomodations. It makes so much difference to our state of mind and health to be able to contribute back to society by going to work or even volunteering.
Courage and tenacity, it works both ways, dear. Thank you xo
My dear, I am sorry to read you are so ill. I too suffer from this awful plight and often don’t get out of bed at all. I’ve stopped wondering why but I have been ill a very long time. I no longer go to docs unless I have to for something ‘new’ my body decides to do that I can’t figure out but now I realize I am my own best physician. At least most of the time…. I do have to keep watch of the depression however.
Patience is a hard won badge I suppose and not one I’ve acquired. I keep going best I can and because I do have more control of my immediate environment, sometimes I get lucky. But the refineries now are processing dirty heavy crude and there are mornings when I cry just looking out the windows, knowing exactly what’s happening in my bronchi and lungs. There is no doubt they’ve been busy pumping all night long as it’s thick in the valleys below me. My newest is GERD and it just happened much like the asthma did. One day I didn’t have it and the next, I did. So now I am disgusted with yet another set of restrictions… Really, it just gets ridiculous doesn’t it?
Know you are not alone, much as I hate that so many of us are suffering with no support at all.
Thanks, L’Adelaide, your empathy is felt deeply. It’s not easy being trapped inside. I can only imagine what it’s like to see the refinery pollution outside your window like that. I’m sorry you cry sometimes, and wish I could just whip in there and clean the air beautifully for you. Depression is not an easy one but apparently it follows sooner or later with all chronic illnesses. Cannabis has just been approved for medical use in Australia so I may try that soon.
Whenever, I try to be my own physician it not only works out badly for me but often, comically. However, I did go an get tested for MAST Cell Disorder, which came out as negative. When you get the patience badge, let me know so I can get one too!
I’m on a vegan diet, but only because I couldn’t digest many foods so it’s not like I’m doing it because I am an angel to animals; although i do love them so. My Bella is always by my side. She’s on my bed right now, lol. I hope your Bella is nearby also?
Thank you, I know I am not alone. Possibly the main reason I write this blog is so that I can have contact with others. Our Government should do more and acknowledge all the people living without support who are impacted on by medical conditions that have chemical sensitivity as a symptom. Some chemical regulation in personal care and cleaning products wouldn’t go astray either. Bless you, I’ve had my eye on your lovely paintings lately xo
I feel for you, Sister, it saddens me that there are others like me, yet, back we had the 2010 Australian Government review into MCS, there was such hope… it states how related conditions such as Fibromyalgia, SEID (formally known as ME/CFS), PTSD, Asthma, Autoimmune disease and a whole host of other conditions are impacted on by air quality; and it’s just bloody ridiculous that they won’t help us. Just the recognition of the (any) disease would make it easier for those who have ‘inhalant allergies’ or have conditions that are impacted on by chemical irritants. This would make accessing services easier, especially for those whose health is impaired far more than ours. Amelia Hill cannot even get to see an in-home dentist: http://www.ameliahill.com/tag/dentist/ We are the lucky ones because we have a voice. <3
Thank you for sharing Michellina, I have MCS and know of the suffering…diesel and the dreadful fragscent chemicals which the ppl are addicted to. It is horrific…I fight on to survive also. (((hugs)))