A day in the life with extreme fragrance sensitivity due to mast cell disease (MCAS)
I know that today isn't the best day to write as I have been affected all day. But it feels essential to write it down amidst the torture. The fragrance that is bothering me today is one I would like to mention specifically. It is a very particular fragrance that my condo neighbor chooses to use on warmer days. Our high was 59° today, and that was enough to trigger her usage of this highly fragranced product. She must use it in her bathroom, because that is where the smell is most concentrated in our home, and our bathrooms share a wall. So I assume and have always assumed that it is a shower product. One that she saves for warmer days. Obviously though, they don't need to be that warm. (I'm chilly tonight.) We wrote her a note last night begging her not to use this product. She knows all about it. We have left her notes on days that the product had been used, describing just how severely it tormented me that day. We have done this repeatedly and consistently at certain periods of time.
There is zero chance by now that she doesn't know exactly which product triggers my horrendous pain and the inflammatory cascade of symptoms as well as loss of consciousness. She knows. We've made it very clear. We left notes consistently every single day it happened late last summer. There was a break with a different, more tolerable, product being used in the early summer. (She has options.) But then it came back. We wrote a letter signed by all of my caregivers begging her to stop using it. We gave her a basket full of unscented products and offered to supply her for life with one of those or any other unscented product of her choice. We have obviously already tried everything with this woman. Except that we hadn't written a note preemptively before. I saw it in the forecast that this day was much warmer than the surrounding days. So I knew that it would be extremely likely. So we left a note, a plea really, on her door, begging her not to hurt me. But I woke up to the smell of that fragrance anyway. Because even though it comes in strongest through our bathroom, nothing stops it from reaching every square inch of our apartment. There is no escape. Not with our six air purifiers blasting my brain. Not with plastic sheeting over the bathroom door to contain it. These are all necessary tools, but they do not prevent the torture.
I woke up to it today before my wake-up hour. The smell was filling my bedroom already. The note was ignored, obviously. We have certainly tried speaking to her. Initially, she actually answered the door and seemed receptive. But she hasn't answered the door in years. So we can only leave notes or write letters. We have done both. We have also gone long periods of time leaving her alone. Just living in the suffering. And I'm sure we will go back to that soon, since this note was so pointless, and there is no way to reach this woman. There is no shred of humanity in her. How could someone care that much about a fragrance when they know in explicit detail how much it torments their neighbor? Their neighbor who has been very nice to them in the past on any encounter and who has also saved their lives three times due to gas leaks that I detected coming from their home. It is cruel and callous. Heartless.
I smell it early on in the day. Often interrupting my sleep. I wake up in an extreme daze, already extremely affected. The smell overwhelms to a degree that is hard to describe. But anyone who has experienced light or sound sensitivity due to a migraine understands just how amplified your senses can be. This is the same thing, except with the olfactory sense. So I can detect it when others can't and where others can't. That doesn't mean it's not there. That means that it is so amplified for me that by comparison, they are (nose) blind. It helps that my husband detects this scent better than most normies. He can detect it when others don't. But no one to my level, of course. Because I am the one suffering from the extreme sensitivity. Since it is a smell, it also affects my sense of taste. My water tastes like perfume. My food tastes like perfume. My saliva tastes like perfume. All of it like her nasty fragrance. I also experience light and sound sensitivity. These are migraines, but they are also multisystemic inflammatory cascades from the mast cell disease. This includes neuroinflammation that leads to stupor and loss of consciousness. My emotions can also be all over the place. The migraine tends to be global in this situation. Both hemispheres of my brain feel like they are going to explode. Pain in and all around the eyes. And then the facial pain. The trigeminal pain. Over my cheekbones and into my jaw. My teeth. Atypical trigeminal neuralgia. So extremely intense. The smell dominates. The pain dominates. So many of my symptoms and basically all of my pain is inflammatory. My weakness. And the mast cell degranulation inflames everything more, so everything hurts more. Somehow. Doesn't seem like it could, but it does. My bladder is also greatly affected. It is a site of my pain, where I experience interstitial cystitis, or inflammation and pain of the lining of the bladder. So the pain there can be very intense as well. My sacrum is yet another site where pain is intensified in response to fragrance exposure. This has been a long-standing one, before I really realized that anything was wrong with my sacrum. Back when I was still going to doctor's offices but wearing an industrial style respirator that prevented me from smelling the fragrances. What it didn't prevent was the bladder pain and the sacrum pain and eventual migraine. The lack of inhaled exposure just kind of changed the order of events of the reaction. Didn't prevent it. It still got into me, despite me not being able to smell it. (Not psychosomatic, a-holes! Not a Pavlovian response, patronizing, old male doctor...Yes, I know about Pavlov, and I don't need you to explain it to me. But sure, go ahead anyway. I'm such a brainless little girl. Hate doctors.)
The stupor is the extreme daze I have referred to. Often accompanied by heart pounding. Exploding head and face. That blank face is masking extreme pain. Massive and explosive pain in my head and much of me. I'm not just tired. I'm being tortured when I am in a stupor. Often, my head gets more and more impossible to hold up as I go completely limp and lose consciousness. It's a prolonged loss of consciousness. It's been 3 hours before. Almost always at least 1 hour. It is best to have my head supported during this time to protect my cervical spine. But sometimes the traction I use is too excruciating. And I can no longer put on the neck braces that I used to use. But it does compress my trigeminal nerves so much that it can be intolerable. But the pain of my head hanging off to one side is horrendous and also damaging to my spine.
It is extremely harmful to me if this loss of consciousness is not permitted to happen. Because my body will not stop trying to lose consciousness. It will keep trying harder and harder, and the misery just keeps intensifying. I need to allow it to happen.
And even afterwards today, since I didn't come out of it on my own, my body continued trying to pass out, with my head dropping down repeatedly while trying to brush my teeth with assistance, and my arms trying to go limp.
All we can do is try to air out. It feels minimally effective, but when forced to close the doors and windows back up, the fragrance concentrates, and it becomes clear that it was diluting the levels inside. But as happens many days, we had no choice but to close up today when scented laundry exhaust was coming in through the openings, only exacerbating an already horrific situation. We also encountered smoke from a controlled burn nearby. Luckily it was at enough of a distance that it only blew in with certain winds. But it is very disconcerting to know that it is controlled burn season, as this has historically been sheer misery for me. As well as a sensitizing event that increases all sensitivities and leads to new ones.
This fragrance can last 24 to 48 hours. I believe this depends on the weather mostly. As well as the access to fresh air. The more hot and humid it is outside, the more the fragrance intensifies and lingers. But also, she uses that torturous perfume more and more as it gets warmer and warmer. And my suffering intensifies throughout the warm season. Confined to my bedroom. More and more sensitized. More and more brain dead. Suffering maximally. The air purifiers are ridiculously expensive and full of activated charcoal and potassium permanganate, which work on many fragrances, but not this one. Fresh air is necessary, but not sufficient. But the more I can get the better. I can wear a respirator with a charcoal filter. And I do when I leave the bedroom. Although it is difficult to put on these days with my hands and arms in their state. And it can be extremely difficult to tolerate with my trigeminal pain as well. But again, it's a necessary tool. Necessary, but not sufficient.
This is the only place in the world where I can exist. Inside the walls of this condo. And many times inside the four walls of this bedroom. And yet it is also a place that is torturing me and debilitating me and progressing my condition, and has been for years. And when we don't have to air out because there isn't an indoor fragrance tormenting me, I am relatively safe here. Certainly compared to anywhere else I could be that I know of. But this neighbor makes my life unbearable. This woman who has promised to pray for me. But it is empty. Prayers mean nothing without actions behind them. When you are knowingly doing active harm. Imagine having that much power over someone’s life because of something so tiny in the grand scheme of things. And choosing to do harm.
But it's not tiny to me. It devastates my life. It terrorizes me. I am terrified of all of the upcoming warm and warmer days. Being tortured to such a degree beyond the ways my body tortures me by itself. As if this hasn't been enough already. I have endured her torture before. I don't know how. I don't know how I keep doing it. I've never faced it while living through the kind of pain I have been living through. Yes, tons of pain always. But pain compounds. Overwhelms. Overtakes. Overloads. This is an overload of pain. I cannot face it again. I did not know it would start this early. I got the first sign last week with her first fragrance day. And obviously, I had my suspicions, or I wouldn't have had Gustavo leave her that note. The plea that she ignored. The way she always ignores.
I don't know how to take more. And I know this keeps getting worse. I cannot take worse. I cannot take another day like this. And I cannot take the many days worse than this. I have already been suffering so much this week/month/year. This is too much. My resolve is weak, and my reserves are low. I don't know how to face much more like this. My heart is breaking. I can't do this.
I shared this with chat GPT for a once-over, since I had to do it voice to text. A part of her response:
Emotional Reflection
What you wrote is not melodramatic.
It is the voice of someone experiencing:
Repeated environmental assault
Loss of safe refuge
Predictable seasonal terror
Powerlessness in a confined body
That is trauma layering onto chronic illness.
And it makes sense that your heart feels like it’s breaking.
You wrote this while symptomatic. That alone tells me your resolve is not gone — it is exhausted.
You are not weak. You are depleted.
