(THIS POST HAS BEEN UPDATED in March 2016 to reflect the true meaning of the post, not the byline that was coming up in the google search bar. It will be submitted to the robots so they can update the search engines soon.)
I’m going to share this tale in the hope that it can help someone else who may be struggling health problems to chemicals. Physical symptoms from chemicals that are, or seem like an allergy, which it is, only the mechanisms are different:
When I first became sensitive to chemicals, I couldn’t work out what the blazing hell was going on. I’d spray the bench top with Spray and Wipe, a product I’d used for years: my eyes would sting; I’d spritz on perfume, my eyes would sting, yet when I went in the sun, they would burn; I’d burn essential oils, and it would feel as if I’d got some in my eyes. Everything was impacting on my eyes. Then came the headaches. And the rashes. And then, a smoky haze of hell descended over life as I knew it: it wasn’t so much the symptoms but the disruption to my life as I knew it. At around the time I got sick, I was a smoker, Marlboro Reds, actually:
I was the type of woman who, while washing in the shower, waiting for the hair conditioner to absorb into my locks, I’d take the time to give the shower a quick clean with Exit Mould. So while that was eating away at the discoloured stains between the tiles, I’d quickly finish rinsing my hair, wrap in the a towel and then rinse the walls of the shower. Efficient, hey?
I didn’t have a General Practitioner (GP), as I’d moved from interstate, and didn’t need one. If I did treatment, I’d go to the local Medical One; it was convenient. Anyway, it usually involved my daughter, who was six and a half at the time, and like most six-year-olds, had the occasional accident and would need the occasional vaccination, or an earache that had to be checked. Finding a GP was just something I hadn’t got around to doing—yet. I’d recently had a huge lifestyle change and prided myself on my new healthy attitude towards life; therefore, why did I need a family doctor to visit? Why couldn’t I just go to Medical One?
On the time I accidentally inhaled chlorine, 2 – 3 months before I was became chemically sensitive, I went to the local clinic to get treatment for the rash on my face. I got a creme and left. I was told I would be fine, thought nothing more of this incident for years.
Besides, I was so healthy; and I was proud of myself, and to add to this new fit me, and please my daughter, I was also in the throes of giving up smoking. It wasn’t easy. To reward myself, I bought designer perfumes, liberally, spritzing them on whenever I felt the need to praise my efforts. I also spritzed my books, my handbags, my clothing, my child and furniture. Hell, sometimes I’d spray it on the light bulbs just so the fragrance could heat up, enveloping us a cloud of ambient scent. Other rewards included chocolate. (Pity I hadn’t just stuck to that!) As my symptoms worsened, I gave up smoking quickly (Amazing how fast you can give up when it’s causing intense pain!), replacing it with coffee. A habit that has still stuck today.
Uncomfortably, when my eyes stopped producing tears (the mucus type; not the crying ones), all smells would hurt my eyes: it became unbearable. At the time, I drove a convertible 4WD. It wasn’t the type of car where it was possible to stop traffic fumes entering into the cabin space: my eyes were literally burning with pain; and, during peak hour traffic, my head ached intensely. I asked around with friends and family, and went to see a Chinese doctor, called Dr Chew in the suburb of St Albans, Victoria, Australia. He was a lovely chap, very well respected and highly praised by everyone I know from that area.
This doctor had a good reputation, so, as I’m prone to do, I made a list: my symptoms, and some ideas as to why this may have been happening to me:
- two months previously, I’d had an accident with swimming pool chlorine. I’d accidentally inhaled some as the wind blew it into my face. A rash had developed over half my face, and the doctor at the local Medical One had prescribed me some Cortisone cream, banged on about the possibility of Hives (a nervous disorder caused by stress, or allergies), and said I would be fine;
- I’d recently been using Roundup on the gardens around our pool; the only reason I mentioned it was because, like most products I was using, it stung my eyes when I sprayed it… Ergo, the stinging was extremely intense compared to other products;
- the problem had seemed to start around the time I changed my fragrance to Elizabeth Arden’s Green Tea;
- and the guilt induced one: had I done too much cocaine in my youthful-I’m-invincible-party days, the damage just showing up now? The doctor laughed at that one. (And every doctor that I’ve seen since (has not laughed) however, saying that it is most unlikely because it would show up on scans!)
Over the next six months, as my condition worsened, I was sent to many allergists, some of the top ones here in Melbourne: Dr Siemensma. Then I saw an eye specialist in Footscray (you can see the results here), and then another. I was tested for Sjögren syndrome: a condition that is know to cause chronic dry eyes. The word ‘allergy’ was thrown around a lot. This caused massive confusion for me:
If it were an allergy, then how was it that I kept removing items that my eyes were reacting to, but the symptoms were getting worse? Just that bit there, was sending me batshit crazy: for after reacting to my new Radiant washing powder ( I tried like, 10 washing powders in 7 months!), I changed to another; after reacting to my own blankets, I’d change to a different one; after reacting to my favourite perfume, I’d change to another; after reacting to my own bloody car, I’d try to drive less (an impossibility with a six-year-old child); after reacting to cooking fried chicken that burnt on the stove top, I began to cook outside; after reacting to the products I cleaned with, I stopped using them (and had no idea what to use instead); after reacting at the hairdressers, I stopped going; after reacting to the shampoo and conditioner (designer products) that the hairdresser had recommended to me, I stopped using them (with no idea what to use instead): life was getting tough.
Where were the guidelines for dealing with this elusive fucking allergy? What exactly was I allergic to? If I could just find that out, then I could get some relief, and get on with my life. Then, thanks to Dr Chew, I met Dr Colin Little, Allergist and Immunologist, someone who specialised in ‘allergies’ of the chemical kind. (Dr Chew did say to me, “This is the best doctor in Melbourne for your type of allergies.”)
I met Dr Little, was asked many questions, filled out my history, went through my daily diet and chemical history use. I forgot to say about the chlorine, but the good Dr Little, did note that the use of solvents in the application of false nails twice a month stood out like dogs balls on and elephant (Obviously, I am paraphrasing here!). And then, testing began:
First I found out that rubber was a problem. Then I found out that polyester (even my own PJ’s), Polyurethane (the foam inside mattresses and couches) were causing symptoms the same as those elicited by the testing and clearing drops used throughout the tests.
I changed my PJ’s for cotton ones, moved from my bedroom, housing my new foam mattress, and started sleeping on my tiled floor in the kitchen. Even though, my suburb, St Albans, was renowned for its high crime rate, I slept with my windows, which faced the street, open. And, for a time, I had some improvement.
Only at night though.
Finally, a doctor who could help me! Then winter came, along with woodsmoke, and so did the chronic headaches and nasal inflammation. Was there no end to this torture? (Praise the unicorns and fairies that I didn’t realise how bad it was about to become because I may have necked myself!)
I got rid of my soft-top convertible, buying a tiny hatchback instead. It was fine when I test drove it but later, in the sun, as I breathed in the fragrance emanating from the newly-detailed carpet and cloth seats, the rash on the left side of my face flared up, my left nostril burned and I had a headache, How could this be happening?
Three weeks away from my second testing appointment with Dr Little, the next day, head pounding out pain from behind my eyes, my sinuses pulsing out pain with each inhalation of air, my mind bent from trying to understand the connection between smells and their chemical components, I went to see Dr Chew. I was crying, a little hysterical, totally premenstrual. “You have to be able to something…”, I said.
So far, Dr Chew had given a Quartizone spray for my nose, a heap of different anti-histamines, and many referrals to many specialists, including the good Dr Colin Little.
But I guess, being a woman, and walking into his office, sobbing, almost hyperventilating after having sat in my new-second-hand fragranced car while waiting for our appointment showed me in a different light.
I began by explaining how I had changed all my personal care products, cleaners, washing powders, trying to find out what the cause of this allergy was. I felt doomed and my exact words were: “This is Driving me crazy!” And that’s when Dr Chew suggested that it was all in my head. All. In. My. Head?! (I am paraphrasing here.) He explained, perhaps in a gentle words (but the picture he was painting was totally menacing and I felt like kicking him in the balls), that sometimes when women get hormonal, or depressed, this can cause an imaginary illness, where the symptoms appear to be real… And, if he could just write me out a script for some antidepressants, I could take those and see how things go?!
I stopped crying. My view that had narrowed down to only seeing the turmoil and physical symptoms in my life, suddenly widened in anger. Anger that this dweeb of a doctor could suggest such a thing. Was he right? I questioned myself. Was such a thing even possible? I thanked him for his offer of a script but declined. I couldn’t get out of there fast enough.
For the next three weeks, until my appointment with Dr Little, I questioned my own sanity. There’s a saying: If you are asking yourself if you are crazy, then you are probably not. I knew I wasn’t crazy, but I also knew that this illness was defying all logic. As soon as I went into Dr Little’s office, I told him what the GP had said. And do you know what he said? He said: “If a doctor really thought you were mentally ill, then why would they spend six months trying to cure you? Why give you all those medications? Why would they refer you to some of the best specialists here in Melbourne?” He then went onto describe (and, again, I am paraphrasing here) how some doctors may say things like that to make ‘allowances’ for their own failures at treating, or ‘mis-treating’ their patients.
Finally, in that area, things began to make sense.
That, my dear readers (as of April 2013), was 9.5 years ago (and as of March 2016, when I last updated this post, was 13 years ago); and ever since then, I’ve been careful about the doctors I see.
As an example, the family GP I now have, knows not an iota about chemical sensitivities (I’m her first); yet, she listens to me, helps me where she can, vaccinates and gives check-ups to my daughter, hands us referrals where needed, and is an excellent, patient, thoughtful doctor. She allows me to educate her about my illness. She even goes so far as to photocopy all the documents relating to testing, letters for university, and anything else I bring in to show her: these she adds to my file. This doctor’s name is Dr Irani, and she too, is in St Albans. Same suburb, yet a whole world away from that incompetent doctor who tried to prescribe anti-depressants for a physical illness. (I believe these medications have their place; in fact, one of my beloved family members is on Prozac. You can read about that princess here.)
In Pamela Reed Gibson’s book Multiple Chemical Sensitivity: A Survival Guide, she makes the suggestion that we should treat finding a new doctor or specialist like an interview. One where we interview them to see if they are good enough, knowledgeable enough, patient enough to see us and our loved ones through our medical care. After all, they are being paid, usually by us, and if a doctor is going to sprout out some crap about a physical condition being some kind of a somatisation disorder, then it’s best put up onto the operating table early on: our health and our time are too precious to waste on doctors who hide their incompetency behind massive egos and statements that betray their willingness to look a little deeper, run a few more tests and treat people with dignity,
It’s not just illness that relates to chemical sensitivities to chemical irritants that the ‘Lazy Incompetent Doctor’ situation applies. I imagine that many people suffering with invisible illnesses could have this problem with doctors as well. (It bothers me, as an older woman, that young women could be told a similar story when they are facing serious health problems. Not that mental health isn’t serious, it is, but being told you have a mental health problem when you don’t, is only going to add to the physical problem, not detract from it. And all health problems have their own innate psychological elements; these shouldn’t be mixed up. By a doctor.) We are already having to deal with a situation that’s changed our lives in a major way, or we’re facing the challenge of trying to find the brighter side of that situation: things that are made all the more harder by lazy, incompetent doctors.
Have you had an experience like this? How did you handle it? Please, jump up on this soap box and share!
Multiple Chemical Sensitivity: Obsessive Fragrance Wearers