A message sent out 5/22/2025
I have suffered a major decline and traumatic incident, necessitating a complete lifestyle change with many adaptations and a new level of disability to accept.
My weakness has been getting progressively worse, which led to severe struggles standing up and sitting down and required extremely slow motion walking, leading to me exerting myself and pushing through ungodly back pelvic pain levels all day as well as difficult and scary times getting stuck in chairs and on the toilet, along with utter exhaustion. The amount of walking was damaging much of my body, especially my sacrum and SI joint region, leading to almost impossible sleeps and the loudest screams yet while adjusting in bed, even just waking up randomly screaming from pain repeatedly.
All of this led to me needing a power wheelchair. Specifically, I needed one with elevation capabilities, since I cannot get up from low seats. (I thought I would buy myself time and help maintain some independence.) Well, it has been essential and made itself even more essential. A week ago, I received my (250+ lb.) chair, and that same day, I experienced a catastrophic accident with the chair, leading to my feet being severely crushed. Unbelievably, I suffered two crush incidents in the same day, doing even more damage. It was not a rollover type of event. I have no balance, and my hand was trapped on the joystick behind me, rolling and crushing me harder and harder into the corner by the bathroom door until I was mangled and broken, my feet bearing much of the destruction.
We considered a late night ER trip but decided to wait an excruciating night, feet extra swollen and throbbing and on fire the entire night. The following day, we decided to get me to a clinic for scans and advice on management going forward. (But no pain meds...of course...as always.) It would have been my first time out since 2023. We tried desperately to get me out of the condo, but learned that I am unable to be transported over the threshold to leave, even with my other wheelchair just two feet away. Surely, I would not have been able to get in a car either and manage all the movements needed in my fragile state. We gave up, as I was way over my full body pain threshold from the extensive efforts and attempts. I may have suffered a permanent (?) rib injury as well. My injured parts have definitely never been the same.
So we had to immediately turn life upside down in order to go forward. The goal for my feet is to minimize steps as much as possible to hopefully allow healing (whatever the official diagnosis would have been-- I assume fractures). And steps are really barely possible, but some very well supported steps are essential to move from the bed to the chair and use the toilet, for example. This necessitates round-the-clock care. This is where my brother, Rob, came in to save the day. He has taken on the job as my caregiver 40 hours a week. 🙏🏻 Dropped everything to help. This provides essential 24-hour care, since I lost the ability to do almost anything myself. I would be screwed without him. Without all of my helpers, of course. Every possible effort is being made to deal with scent issues, which are obviously a huge challenge of mine.
We are learning to manage this new, freaking stressful and depressing life as we go the best we can. Assisting me with tiny steps is very difficult. We are learning to manage toileting, including a urinal station (less ups and downs) and a brand new (today) commode--yippee. I have declined further in strength in just one week, and I do not believe I will get back to where I started, as the decline was already happening, and my ability to be independent was already waning quickly. Sitting in the chair literally all day is already causing me many problems (not ergonomic), but there is no alternative currently. Napping or passing out are very bad in my chair. I miss my nap chair badly. I miss my actually comfy couch seat a ton. But they are not possible.
Along with the leg atrophy, I am also experiencing a flare up of my swallowing issues. Coughing is unbearably painful for my sacrum, and my intake has decreased, which will not help my progressing debility.
My emotions are not good. Depression and anxiety are high. Energy level is in the basement between bouts of anxiety. Anxiety has been so high nearly round the clock since the decline started and my situation became more and more desperate. That has lessened at times with the extreme fatigue and burn out and the relief of 24 hour assistance.
Summer was absolutely full of fragrance and migraine issues. The neighbor's fragranced product she uses in the bathroom increases in frequency and intensity enormously. It's the same old product that's bothered me for years. Disgusting floral puke garbage torture fuel. She is 1,000% aware at this point which product causes me problems, and she couldn't give two f***s. Not even one f***. She absolutely knows the devastation that she inflicts upon me. We have made it beyond blatantly clear exactly which days are problematic and exactly in what way it harms me. This is a choice to continue harming me. And there is no escape within my apartment. Unfortunately, my hypersensitivity issues have reached the point that there is no safe haven anywhere, including my bedroom, even if we seal it up with a plastic zip door, along with the bathroom being sealed up with a plastic zip door. Doesn't help. I believe there is some other path between her bathroom and my bedroom besides the most direct path, which is into our bathroom, where the fragrance is most concentrated. There must be some other route that this fragrance takes to invade my bedroom since sealing the door doesn't help.
The other major issue of summer is laundry exhaust outside. I am mostly confined to the bedroom in the summer. Sometimes, I can sit in the living room near an open door, but sometimes that isn't close to enough. And the longer summer goes on, the more hypersensitive I get to it (and all scents...I become more reactive to my caregivers too.) More exposure = greater sensitivity. But opening doors and windows is impossible when there is horrible laundry exhaust out there tormenting me so much of the time. Otherwise, I could sit in the bedroom with the window open and a mask on and my highest powered purifier going at whatever level I can tolerate and decrease my exposure. But that all fails when there is an outdoor pollution problem, which happened so much over the summer. We only half jokingly said that someone must have started running an in-home laundromat business in the building next door that must exhaust near my patio door and bedroom window. It isn't coming from my building. A new laundry product was used last summer. A citrus smelling one. Not having been in a store in over a decade, I kind of wonder if it's a Fabuloso scented laundry product. I know that exists now, and that they do have fruit smells. Not that any of that matters. What matters is that the laundry tortured me day and night. We had our excellent portable AC installed in the window and sealed up as well as possible around it. But that does not prevent scents from seeping through the machine itself, which by its nature, is an unsealed opening. So we frequently had to cover up the vent hole from the outside and use no AC to prevent torturous laundry fragrances day and/or night. Many overnights spent wearing a respirator and sweating my butt off. They started doing laundry during all my sleeping hours. Although my body still sweats selectively (dysautonomia), even when the bedroom reaches the mid 80s or higher at times. I had heat exhaustion a few times (85°+), but I chose heat over scent, because I can tolerate heat better. I can stay conscious better. Less pain. That freaking laundry exhaust kept knocking me unconscious along with the torturous migraine and facial pains. And then you can compound it with any time the neighbor did one of her super stinky showers. She takes some showers that are less harmful, so I know that she has other options for products. I can notice the smell of those in the bathroom without being tortured by the intensity or fully confined. She knows she has other products. But as I said, doesn't give a f***. But those two scents definitely compound my problems. It was great to have Rob around to help open and close the window and seal the AC off when needed, since I was unable to do anything like that. I am also extremely lucky that Gustavo is so tolerant of heat and was willing to sleep in a too hot bedroom way too many nights. I don't think many would be able or willing to do that. The devotion of that man is hard to match. But such a long and torturous struggle.
So, the frequency of fragrance attacks went down when we gave up on the AC and uninstalled it and as the weather cooled and the neighbor chose to use less of the torture product. My consciousness improved and migraines reduced, and I got to spend more time in the living room again.
Unfortunately, it is my belief that all of these dramatic inflammatory mast cell cascades led me right into my next severe decline/deterioration, which I'll write about in the next post.
