Encountering a fragrance trigger for me is like literally slamming into a wall, I can’t move forward in that moment, I have to step back and regain control through breathing exercises, my inhalers if it’s bad enough, as it feels like someone is scraping the inside of my lungs with their fingernails. So, I back up, put on my mask, regain control and move forward again. However, now my body is on high alert and the energy starting to drain so fragrance triggers happen more easily. Because they are everywhere and a persons body can only fight so long. I have limited energy to begin with but I tend to have a slight stubborn streak and restless nature, I have learned how to navigate my new world as best as I can. I just keep my head down and drive forward. That doesn’t stop the next fragrance trigger from hurting unfortunately. Depending on the strength of the scent from the first one my asthma may or may not be triggered. By the second one my asthma always is. This feels like hot fibre glass has been used to scrub my lungs raw, while my lungs begin to constrict. On average, my inhalers are enough to stop the spread and cool the feeling, I’ll take some benadryl to keep the reaction in check, the tightness always remains though and it will until I can both be completely removed from an odor and take a nebulizer treatment. Most of the time one or both is not possible so I just let my chest be tight. It’s a very fine line to walk, one that’s taken years to learn. Encountering another odor trigger after this means I’m done for the day, I need my nebulizer no longer have the energy or ability to keep going.
Now there are a lot of factors that go into how I react to a scent at any given moment. Weather, season, sleep, food, hydration, pain level, allergies, other chronic illnesses and energy level all have an effect on how my breathing will be that day. Each day is different and it can change rapidly. There are days were my ability to breathe changes by the hour. For those that have seen me where oxygen, I wear it because it acts like a stabilizer, stops my lungs from feeling like they’re on fire after a trigger and adds more time to the limit I’m able to stand an environment. Think of it like scuba diving, just on dry land. However, oxygen is not something I can take constantly and my access to it is limited.
Then there are days like yesterday. Yesterday I had an appointment with my ENT and speech therapist. I hate going to this office. It’s a very bad office breathing wise and it’s big so there are always people. On top of that, since it’s a doctors office, there is hand sanitizer everywhere being used liberally by everyone. As it’s on the second floor, I have to take the stairs since the elevator has a plug in scent thing. Walking up those stairs is like walking into a dense fog of odor. Yesterday in particular, there was a lot of heavy perfume and when it’s that heavy the odor hangs in the air long after a persons left. My appointment was at 2pm so by this time there a lot of fragrances just hanging in the air. The office only has internal air circulation, none of the windows open to aid in ventilation, the effect of this is that scent’s just get recirculated over and over.
It took me 4 attempts to even get to the check in desk. I would get a little farther each time then hit a wall of perfume from someone standing in line or sitting in the waiting room. Each time I would have to retreat to the stairwell, down a flight, in order to get some modicum of ability to breathe while I took more puffs of my inhaler than you should. I was already wearing one mask to get in the building and after the first attempt I put on my second one, but it was still not enough. So, on my final attempt I added putting my shirt over my masks. This helped enough to check in while very short of breath. I retreated back to the stairwell again to wait for my name to be called. Once back in the exam room area it wasn’t as back and I got a chance to take off the masks and regain control with my breathing exercises. Until the doctor used hand sanitizer twice, even though he had been asked not to.
Look I understand more than anyone how habitual it is to use hand sanitizer in between patients, but not only was he warned, this was the second time he’s seen me and very much knows about my issue since the last time I was there they almost called the ambulance on me.
So by that point my ability to thought process is almost zero, I can’t really process what I’m being told and I’m getting lethargic and just want to go home. Having to do breathing tests only adds to that, especially as taking a nebulizer treatment would ruin it so I can’t and then to leave I had to go back thru the gauntlet of smells.
Once I got back to my car I had to take 2 nebulizer treatments and sit for an hour trying to get some energy back for the 2 hour drive.
Which brings us to today. Because when you have health problems and chronic illnesses a bad day has effects for days, it takes days or weeks (sometimes months) to rebuild enough energy to leave the house again after a bad trigger day. So today sucks, I knew it would. My lungs feel like someone scrapped them out with a red hot melon baller then patched it up by stuffing fiberglass down to my alveoli. I can’t move without becoming breathless and very short of breath after. My ribs and sternum feels like it was used as a bare knuckle punching bag. I can feel every single rib joint move and the intercostal muscles are inflamed. Yet when I try to take a breath it feels as though my chest is wrapped in an ace bandage binding (young me was not smart with binding ok). Suffice to say it hurts. I’m in so much pain when I try to move that I nearly cry, which is not something I can do or it makes the breathing worse. The only comfortable position I can find at the moment is laying on my side. I have nothing for the pain because doctors don’t believe a woman, or rather an afab person, when they tell them their pain scale and the opioid crackdown means I can’t even ask for pain meds without being labeled a drug seeker.
So yeah, today’s gonna suck but it’s nothing I’m not used to. I’m not writing for sympathy or pity. I’m writing this to share a little bit of what I go through because it’s hard to explain and no one really knows. I’m writing this so that the next time you go to wear a fragrance you stop and think about where you’ll be and who you’ll be encountering that day. Think about the multiple layers of scents you’re wearing. Think about how many of the things you use that are fragranced, your shampoo, lotion, deodorant, hair products, laundry detergent, hand soap etc, these all add to the layering effect. Are you going to be in an enclosed space where other people will probably be wearing scented things? These are all things to think about before you head out the door. Obviously, if you have a doctors appointment that day, please don’t wear a fragrance. Wash your hands instead using hand sanitizer when able. You never know what the people around you are going through and that goes for disabilities and chronic illnesses as well.
