REPOST Wednesday May 2019
This is the sign on the door of one of the study rooms inside the library at St. Alban’s Victoria University (VU). It’s a fragrance free room, so in effect, it’s actually a fragrance free policy, yes? For me, the best thing about this room (besides that I can book it for two hours use at a time) is that it was set up for other people besides myself. Other people who also suffer adverse health effects from fragrance. So, I’m not alone in this world where it seems so many people ignorantly gas me with their body sprays, hair sprays, and fragrances, that adhere to my hair, my belongings, my lungs and my sinuses while making me ill for days.
This sign means that when I push the boundaries of this toxic world, I’m doing it for the next person who is struggling with the air that has been contaminated and polluted with personal care products that contain ingredients that are not only not listed on the bottle, but also lacking in proof that they are safe. Yet, here I am: Am I not proof enough that they are not safe?
I too, used to use these products. For the last nine years I haven’t though. The symptoms I receive from inhaling fragrance at close range are swollen eye-lids, burning, itching eyes and nasal passages, a rash on my face, sinus pain, which leads to inflammation that can build up and become progressively worse for days, and, in turn, makes it painful for me to breathe through my nose, therefore forcing me to wear the mask, and nasal filters–a lot. Once my sinuses are inflamed, and pounding out pain from behind my forehead, cheekbones and nose, it makes basic living skills, social interaction, and the most average tasks like cooking, and driving problematic because breathing in those fumes and aromas is horribly painful.
When I’m in a room where there are spray deodorants, and/or hairsprays, my thinking gets muddled; sometimes it’s like my mind is crippled and that, as a writer, is the most scary part for me. I can’t write, or my fingers forget where the keys are and I can’t connect my thoughts. This happens worse when I’m wearing a mask because they saturate the carbon on the outside of the mask until that’s what I’m breathing through: a mask impregnated with Rexonna and Lynx aromatic vapours. Once this happens, I can get an unbearable pain on either side of my lower back; when this arrives, I have to go home and miss out on my learning because it hurts as if I’ve been kicked with a pair of steel cap boots–a dull, hot pulsating pain spreads out across the back of my hips.
In 2012, this year, these exposures snowballed and compounded on top of one another, squashing more than just my health: my spirit took a pounding and I felt much more than just excluded from the world. My world. I had to leave 2 out 3 of my classes for the last half of the Semester. Amazingly, thanks to the teachers and staff at VU, I think I’ll still pass.
Sometimes I think that I’m an idiot or crazy for wanting to attend classes with the goal of eventually becoming a Professional Writer and, hopefully, earning an income. And I’ll look at the situation objectively and think: why would someone who gets this ill, want to continue? But you see, I deserve to give myself this chance. Being a writer is something I can do from home, and it’s something I know I can be good at. I just need that chance to succeed. The same chance that all the other students have. Even though I have this affliction, perhaps, there is something good about it that might help me see things differently? Maybe, I can develop more empathy, or be able to help others like myself? But then, there is the gravitational pull of my dreams, placing me on this trajectory where I’ve ended trampling in my literary idols space dust: Luke Davies, Christos Tsiolkas and Fiona McGregor. There is the momentum of this pull that I can’t describe, which keeps dragging me into writing in the genre of dirty realism.
But the bloody chemicals get in the way.If only the mask protected me; if only I could switch off from being chemically sensitive and tune into my writing, and nothing else. But no, the planning; the avoidance strategies; the fear; the anticipation; the vigilance; the monitoring of the air; all get in the way of why I come to school in the first place: to focus on my craft, to learn. You see, the problem with wearing this mask to school, to protect my upper respiratory tract from fragrance symptoms, is that it makes it difficult for me to instinctively smell exactly what’s there, or where it is so that I can leave that area. And by the time, I find out, it’s too late and I’m sick for days. And if I lift the mask or take it off for a bit so that I can test the air by smelling it, just that amount of breathing in such a cornucopia of other people’s personal care products, means that I experience some of the symptoms described above, and my class time is cut short.
This year, the only option that has worked for me is to leave the mask on tight–for around four hours–throughout class, the break and the drive home (which restricts the amount of air I can breathe; and as there are no deep breaths, only shallow ones, or any fresh air to intake, this amounts to a headache) where I can get in the shower immediately and wash the fragrance, solvents and petrochemicals off me. I hang my clothes to air out in a separate area, ready for washing later, the next day, I can always tell what the concentration of fragrance chemicals was by how contaminated my clothes are.
If I’m lucky, it’ll only take me a day to recover, if not, it could be up to three days, to a week.
This was an extremely informative look at your condition, and I feel much more informed now having read it, not only on what your illness is and how it works, but also what it’s like to have it and how you feel. I think this would be a great piece to share with people who are newly diagnosed. I wish this kind of stuff popped up on a google search instead of those terrifying medical sites. I would have found support and comfort for my illness much sooner if they did!
Aww… that’s so validating, Rachel, thank you. My aim is to make this site something that I could have done with when first diagnosed. There are support groups, but until i met others like myself, it was pretty scary. It’s odd, but in doing creating this site, I’ve received a lot of support when I needed it most. And, it’s been helpful to find people like you who share the walk in this invisible illness minefield.
PS: stay away from those medical sites! 🙂
It is great you are taking classes. The ability to take classes with a group of people (not on line) is something that I really miss.
Yes, it is great. When I enrolled, I was a lot better and I didn’t need my mask. I can remember that the only things that effected me, during the first year, was if another person had on perfume, aftershave or deodorant. And then I’d ask them if they could please not wear it. I also have a letter explaining my condition and asking for their help; it has a foreword from the course co-ordinator supporting me. This year, it’s a whole lot different, and I never would have done this if I’d been this sick (carpets, inks, many, many things). It is hard to study online if you are a visual learner too. Have you tried studying online?
I haven’t done much online – I like the people interaction and I’m a visual and a hands on learner. I also have shoulder problems so I have to limit my computer time. There are some great online resources though. Periodically I will go to a workshop or something and find a corner by the door or the vent. We all learn to be creative and work with what we can do, right?
Yes, we do learn to work with what we have. I tried studying online; it’s okay if the work is not challenging but getting stuck on a question of task is frustrating when no-one is there to help. For this school, I have it in my Disability Access Plan (it’s an official document) that I am to sit near the door, but I may change to a corner because then people are not walking past me all the time. I think we are in our rights to ask people not to wear fragrance though. I love workshops!
Thanks for sharing this Miche – you are an inspiration. I would hate a mask on my face as I suffer from claustrophobia so I am grateful I can get by with sinusitis, migraines and burning eyes as they don’t occur quite as often as does yours.
I literally hold my breath when at the petrol station and when you describe not breathing properly because of the mask and then it’s saturated with god knows what – that in itself is not good for you. I did yoga for years and belly and deep breathing is the key to good health. Shallow breathing is not good so I really feel for you.
I have gained relief in the past with Kinesiology especially with petrochemicals and I’m working very hard like you to work from home and earn a living as air conditioners in the workplace are one of my biggest downfalls, flaming red, itching and burning eyes, body temperature drops resulting in sinusitis and fatigue.
I find the unnatural coldness of them quite debilitating – nothing at my house to upset me except when there is a distant bush fire that is currently raging somewhere and the smoke filled air is really, really making me ill.
I meant to add in one of your other posts too, I can’t remember which one now, but I too taste chemicals – it really is something that hits my palate before I smell it, if that makes sense (I’m sure it does) and once the taste is in my mouth – I’m pretty much useless to anybody.
I really am stoked your college has been so supportive of this. I find my experience in the workplace is one of: ‘WTF is her problem?’ so I have a bag stocked with anti-inflammatories to get me through a work day – pretty crap, huh? But grateful I’m not so bad I have to wear a mask. I do have a pet hate when people spray deodarant on in the work area…I then have to leave the building in a rush and pray it has dissipated by the time I get back. I get full blown migraines.
I really do empathise and admire you greatly, MIche having to endure wearing a mask when out and about has to be pretty awful and not make you feel very liberated at all. BUT I know from previous posts you overcame all of this – but you lost sight of something and your sensitiviities came back – so I am very confident you will find your way through this haze and live with it easier like I do to where you can ditch the mask and be out and about more if you so choose.
Keep up the good fight – your rock! X
I know that claustrophobic feeling about the mask, but I hate not going places. Having said that I feel better lately, because I haven’t been going places. But I love going to Uni because I left school at 14, and I’ve always considered myself a dumbass, and now I know that’s no longer my truth 🙂 I’ve always been a writer, now I’m just learning how to be a real one!
Ha, ha… I wonder how long you can hold your breath for? I’ve been doing some Yoga at home with Ducan Peak on DVD (he’s a bit nice that guy), and I do Yoga on the beach when I can, and I really notice when I’m not breathing correctly but I didn’t really have any thoughts on the shallow breathing being a problem (apart from oxygen to the brain, and causing me to become a mute); perhaps, I need to do more Yoga to make up for it?
I went for a lovely walk on the beach yesterday; it was so perfect as it was hot and humid, yet overcast.
I’d like to know what you did at the Kinesiologists, as mine, mostly, showed me all the chemicals I’m sensitive to (or that my body can’t process, as he said) and most of these I already knew from testing with an immunologist… except for chlorine, which is interesting because I had that accident where I inhaled some on the wind when putting it in a swimming pool filter, but where it was even more interesting was that the house i lived in 2009, when I recovered, didn’t have chlorinated water; the water all came from an underground spring, an then went through two filters. So for the last year, I’ve been only drinking Purea spring water. He also gave me a lot of expensive supplements, which I think helped somewhat, but that was all (Oh, and some Genealogy testing, which was interesting as well, as well as provoking me to do some massive diet changes.)
I’m stoked about Uni too, I think next year is going to be even better, especially if I can get my health to improve. VU Disability are working on a plan too. That is awful that someone sprayed deodorant in an office like that. I really think that spraying things will be banned in the near future. It’s going to get like the smoking debate did. So many people don’t say anything unless they get really sick from it. I’ve always said something, and used to cause trouble and upset people until I learnt that I have to approach it in a different way, and use particular language. A doctor’s letter helped, but I still need to learn to be more assertive about my needs, I guess. It’s a human rights issue.
Thank you, Michelle. Your comments are inspiring xx
I did lose sight of something, and I’m still reflecting on what that was, perhaps, being grateful and appreciative of getting my health back? AH, ditching the mask sounds so sooo good to me!
Cheers and Luv to you sweetie ♥ ♥ ♥