I haven't written in a bit. I thought I ran out of things to say. But s*** keeps happening to me. I had a week of viral gastroenteritis, it would seem. I was only able to take in about 500 calories of white rice a day. I was so incredibly depleted. Trying desperately to avoid extra commode trips since they are so damaging. And then my body flipped, and suddenly I couldn't go. Several days passed, and then I was impacted. The rice turned to concrete. Severe distention. I got myself out of that one too (day 5). I luckily avoided manual disimpaction, which would have fallen on my husband. Would have been incredibly unpleasant and painful. But I know how to use my magnesium oxide exactly correctly. I read my body exactly correctly. I got myself out of it without yoyo-ing back. It doesn't matter that two AIs told me I would probably need medical intervention. I laughed at them. There is no medical intervention. I am the medical intervention, as I have been for so many years.
But we were fortunate that we had some cool weeks there. A lot of that time was cool, at least cool enough for me (and the neighbor).
And then something shocking and surprising happened to me. My older brother came into town. He saw my next door neighbor walking outside. He talked to her. He was kind. He was empathetic. He was interested. He shared about my reality. He shared about how this fragrance affects me. He tried to share a link to my blog. She seemed open, receptive, caring, human? He left her an incredibly generous and thoughtful letter as well as what must have been an extremely large amount of fragrance-free products. Everything she could possibly need to replace scented items in her home, since she had expressed willingness to do so. And the most unexpected thing happened, which is that it worked. We had several warmer days. Days that were guaranteed to be stinky and torturous. But the fragrance never came. Without that fragrance, my body was allowed to do some recovering. My body was allowed to get the rest that it needed so desperately. Deep rest despite the tortures of bed. To recover from the extreme depletion of my GI ailment. Healing was beginning. Not a magical level of strength returning. But ongoing injuries and severe instabilities given the opportunity to become a bit more stable without the fragrance stealing away my neuromuscular function from me. Robbing me of the structural integrity that my body is capable of, which is pathetic, but better. Noticeable. An extremely meaningful change in function. And beyond that, a different social world. Being able to be out of the bedroom. Being able to spend time in the living room with my mom and my brother. My caregivers. Regaining enough neurological tolerance to watch TV again. Literally three family members watching Celebrity Jeopardy together. This would be an everyday occurrence for a normal person. And the level of pain and dysfunction I was still suffering through would still shock and horrify anyone who had to experience a moment of it. But that's what happens when your baseline is so low and something alleviates. It was life-changing. I sent the neighbor a heartfelt letter. Maybe I'll just include it here:
Hi neighbors!
I wanted to thank you from the bottom of my heart for reducing fragrance use this week. I expected yesterday to be a day of overwhelming suffering due to fragrance. I was bracing for it. And it never came. It felt incredible. My baseline pain and symptoms are so high, but the relief of not compounding the issue with fragrance was remarkable. I can't adequately express my gratitude. I appreciate this change you have made so very much.
Sincerely, your neighbor,
Carolyn
And if she had made it through a full week after I gave her that letter the first weekend, I planned to give her another thank you letter and a gift. Maybe some flowers. Something thoughtful. Something to reinforce the desired behavior and express genuine gratitude for just how life-changing this had been.
With the use of past tense, you see where this is all going. We had a hot weekend. In the upper 80s. I don't know what temperature it was on Friday night, but it was definitely a warmer day, and the following day was expected to be hotter. This would take a great deal of restraint on her part. But it seemed to me that she was using the fragrance free products. Maybe somehow, the message finally got through to her. Maybe she came to feel more affected by the consequences of her behavior. And Friday was going fine until right after dinner. It was going to be my nap time. We had the patio door open in the living room, as usual. I initially thought some laundry air had come inside. An extremely common occurrence. I put on my mask, we closed the door, and we turned up the Pura. It would have cleared out pretty quickly. But it wasn't laundry. It kept intensifying. I knew quite quickly that she had done it again. She had used the devil fragrance. It wasn't coming from outside. We had to open the patio door back up to try to air out, and I had to flee to the bedroom. But the fragrance quickly invaded the bedroom. And my body started going into great distress. All of the life-destroying symptoms. Sledgehammer migraine and trigeminal pain, vertigo, pounding heart, cognitive effects, severe weakness often crossing over into full loss of tone, which leads to more frequent injuries. The neighbor messed with my head by giving me a glimpse at a better life. Sensory tolerance. Shared time in the main living space. More structural integrity for my body and therefore less injuries. The return of the dreaded fragrance dashed all hopes for slowing the decline, injuries healing, etc. My brother offered her a lifetime supply of any product she could possibly need. She responded positively and changed my life. And then that got ripped away from me again. The fragrance was even stronger the next morning according to Gustavo. Strongest in our bathroom with the shared wall. But obviously affecting me enormously in my hideout in the bedroom. The very warm bedroom. We dealt with over 80 degrees and humid day and night along with the fragrance never leaving from Friday night until Sunday morning. I don't know when she'll hit me again, considering we have two more days around 80° left before a temporary cool down.
A week and a half of breathing. Of my body being allowed to just exist without assault. A glimpse of what life could be, and then having it ripped away in one evening followed by a devastating weekend. That is not just a let-down; that is profound grief...and fear.
My younger brother has also spoken with the male neighbor. He even got his cell phone number and has been in contact. (While the phone number that the female neighbor gave to my older brother was fake.) This was a real number. He claims to not know what happened Friday night. Says she's using the fragrance free products. Either oblivious or complicit. Doesn't really matter to me. I already have lost all hope. I am still incredibly grateful that we had a united front here. Both of my brothers stepping up to try to protect me and defend me. Doing everything in their power. That is very special. I'm very fortunate to have them, even if they can't work miracles on that person next door.
So then Saturday was a day of absolute hell. I had to sleep in a hot bedroom full of fragrance. I had to spend the day in a hot bedroom full of fragrance. And being a weekend day, every time we tried to get the airing out going, laundry started up again. So the hits just kept coming. Gustavo did everything in his power to help me through the latest progression. I already lose tone in most of my body. I already lose postural tone and cannot adjust myself in my seat. My joints take on extra pressure and get pushed out of what should be their place as my body slides down out of my control. We did all we could. But the part that has gotten worse is my ability to hold my head up. It was already bad. My head flopping around. Often falling forward. That is the most common, although it really just can't find a resting place, so it tries any direction and flips around. And unfortunately, my neck has shortened by inches, so none of my collars fit. Even my most comfy soft collar is enormous. My spine has been through hell. No wonder the suffering is so extensive. Spinal deformation. Being crushed through those delicate nerves that feed into everything. Anyway, we had to find a way to stabilize my head. We have inflatable cervical traction that I use during my naps. Given my spinal instability issues, this is the only way I can let my body go limp in my chair. We try to not exert too much upward force, as that would cause further damage. We do our best, but I do have to be able to let my head rest without having it fall too far in any direction. So we had to do the same thing gently while I was awake. Altered, but awake. Unable to support myself. Still needing to wear my respirator. That's what led to our new setup for stinky days to try to protect my spine a bit better, which allows my body to at least find a resting point, despite the chemical attack and shocking pain preventing any true rest. I will share our new setup. I'm in rough shape. The picture looks funny, because it was so hot that I was not really dressed this weekend. No need for extra layers. So my husband covered me up for modesty's sake. But we still wanted to capture this form of supporting my body. The angle. The traction fullness. The position of the respirator. The padding behind my head. Because we will need to recreate it the next time she stinks up the place to torture me some more.
I know they're messy pictures. It wasn't really meant to be shared beyond my other caregivers, but what do I care? I also haven't had my hair washed in weeks. (My last hip injury and greater spinal instability presents even greater challenges.) I'm a freaking mess. Everything's a disaster. But this is how we are trying to protect me now. The lengths we must go to to try to help me prevent injury and maintain consciousness. My body is actually staying pretty much on high alert during the day. Overloaded to the point of severe impairment while still conscious. My heart pounds non-stop. And then I have to find ways to actually eat and drink and toilet and perform basic hygiene through this full bodily assault. This requires a high degree of care, and a pretty high level of risk, given the almost full depletion of my muscles and the severe vertigo. Having to take the mask off to eat. My exposure increasing more and more.
And then the next night was followed by more of the same. Warm bedroom. Fragrance never got to leave. Attempts to sleep through the immense pain in a hot bedroom wearing a respirator. It was still everywhere. It was still strong.
I don't know what's next. It's not good. More oppressive and unrelenting heat. Greater incapacity and degradation. For how long?
