One of the first symptoms to impact on the quality of my life was chronically dry eyes. Whenever I spritzed on my favourite perfume (one of them, at the time being), Elizabeth Arden’s ‘Green Tea’, my eyes would sting, giving me the sensation of the perfume being in them: it’s a sticky feeling where the lids feel like there’s something gritty underneath them. They’d sting, and rubbing them just made them worse. Then the dryness started.
At first it was only with my own fragrances but later, after naturally stoping their use, it would happen at the supermarket while standing in line at the checkout, and I’d realise that I could smell someone else’s perfume or aftershave at the time. The more I sniffed, the worse it got; therefore, it seemed like it was the ‘smell’ rather than the ‘chemical components’ or ‘scent’ that were impacting on my eyes. This gave way to the seemingly ridiculous term: “Smells hurt my eyes.” Some doctors raised their eyebrows at that one, while others turned their head a little too quickly when I expressed that medical complaint to them. But once the swelling and inflammation started, it was obviously and allergy, as I was told. Now, that made sense.
It wasn’t until after undergoing testing with an allergist and immunologist that I found out that it was the musk and rose (artificial) based ones that were the worst for me. Sure, inhaling the scent while smelling it was a problem; but even with a cold and a blocked nose, and breathing through my mouth, the exact same thing would happen. Giving up my perfumes upset me but just the idea of finding relief from these symptoms was enough to make me throw them out. Essential oils: Ditto. (Later (by five years!), as I recovered, I found that truly un-violated plant based oils were something I could incorporate into my beauty routine: Rose-hip oil, Rose Geranium, Sandalwood; these were all stars in my spa bath and personal care products (mostly Akin by Alchemy: also products used by many people with chemical sensitivities).)
For a while there, being told that my condition was an allergy did my head in. That is, until I moved to live near the ocean; then it was pure freedom from the psychological aspect of this condition. You see, with an allergy, it’s just plain logic that a person would be able to discover the source, eliminate it from their lives, or try to avoid it all together. (Like cats, or pollen.) Yes? But no, it seemed that I was on a never ending journey, entering into a Labyrinth of hell: a place of frustrating strangeness. Until I moved, it became so bad that after exposures to airborne fragrances, my eyes would sting, swell and dry out to the point of such pain, I just didn’t know what to do. Even crying stung my tear ducts with sharp needle-like pain as the tears welled up: pain that’s severe enough to stop a person from crying (a strange place to be at!). And the lack of an explanation for my symptoms just made the whole experience worse: I blogged about the doctor who, unkindly and unethically, made the psychological aspect of this medical condition worse. However, another awesome specialist suggested the use of artificial tears. These have no preservatives and come in a handy single use packet: Bion Tears. Not kind to the environment by pure gold for sore, dry eyes!
Some nights, I’d wake up and, painfully, my eyelids would be stuck to my eyeballs. Excruciating! Opening my eyes felt as if there were dried paper stuck to them and just the tiny movement of moving the lids, made it feel as though the paper was being ripped off of them. It got to the point where I’d sleep with the drops under the pillow, scrambling for them on awaking. I wore dark glasses and a hat to go outside; and I avoided sunlight like a character in a modern day vampire television series.
An Eye specialist, Dr J Doug Roydhouse at Vision Eye Institute, an Eye Clinic at Footscray, Victoria, Australia, whose area of expertise was General, Cataract and Medical Retinas, did a test call a Schirmer tear test, as requested by my specialist, Dr Colin Little. The test: 0 ml in 5 ml for the left, and 0 ml in 5 ml for the right. The specialist explained that tears are made up of water, mucuus and thiner water and mucous layer. He couldn’t be specific about which part was missing but he could say that my eyes were overly dry. Menapause was mentioned—I was 33—and the term Sjögren’s syndrome was also bandied about. The doctor had on a shit load of aftershave, too! (I remember back then, the idea of asking someone to go fragrance free had me shaking in my shoes: What if I offended them? What if they said no? What if I made a nuisance of myself? What if I couldn’t access healthcare at all? No wonder, I went a bit strange finding my feet on this scented rocky terrain scattered with peoples’ sensibilities… )
You can read more about that test here. And here is some information on Sjogren’s Syndrome, which, thankfully, I don’t have:
Sjögren’s syndrome is an autoimmune disease that mainly affects the eyes and salivary glands, but can affect different parts of the body. Symptoms include dry and itchy eyes, a dry mouth, thirst and swallowing difficulties. Although there is no cure, proper treatment should provide comfort and relief.
I have all these symptoms and more when exposed to fragrances. The dryness has an impact on my whole body though: skin, bowels, everything.
After Sjögren’s was ruled out, along with other related disorders such as Lupus, my doctor measured my hormone levels and tested me for fragrances. Well that was a horrible test and not one that I would happily repeat: sneezing my brains out, coughing and flushing for fifteen minutes surprised me. However, the good doctor wasn’t surprised: the other tests were just a matter of elimination. In fact, he had other patients with similar symptoms and recommend that I do what they had done. Move. Avoid Fragrance. Create a clean living space. He also printed out this study and gave it to me. Now, I’d like to share it with you.
Here is the gist of it:
“The majority of dry eye symptoms are due to a chronic inflammation of the lacrimal functional unit resulting in a loss of tear film integrity and normal function. This leads to a reduction in the ability of the ocular surface to respond to environmental challenges. The underlying cause of tear film dysfunction is the alteration of tear aqueous, mucin, and lipid components. This may result from a systemic autoimmune disease or a local autoimmune event. A lack of systemic androgen support to the lacrimal gland has been shown to be a facilitative factor in the initiation of this type of pathophysiology. Tear secretion is controlled by the lacrimal functional unit consisting of the ocular surface (cornea, conjunctiva, accessory lacrimal glands, and meibomian glands), the main lacrimal gland and the interconnecting innervation. If any portion of this functional unit is compromised, lacrimal gland support to the ocular surface is impeded. Factors such as neurogenic inflammation and T cell involvement in the disease pathogenesis as well as newly developed animal models of ocular surface inflammation are discussed.”
Click here to read the rest.