As usual, I'm writing because I feel desperate. I can't well summarize all that's happened since I last wrote. I'm just sharing the latest preoccupations that have been bothering me.
Feeling the overwhelm and impossibility of life and future. I have fragments of a life I would like to keep, but I don't know how to hold onto it. It keeps slipping away from me, getting harder and harder to hold onto. My home and quality of life are a sinking ship.
Practical issues:
-The upstairs scent that started January 13 and seeps in strongest into the bedroom. As soon as I had figured out the damage the heat was doing to me, there was barely a break before this issue arose. The air purifier doesn't seem to be sufficient, even in the bedroom (smaller airspace to control). The scent is so strong in there that it builds up over time, even with my best purifier. All of this leading to needing to open the windows often. But the outdoor air is often not safe and is way too cold. But I have no other option when I'm trapped with that scent. I no longer have a safe bedroom, my one safe place in the world, contributing to the ever-growing sense of unsafety in my world. I was down to one safe room, and now I don't have that.
-My bedroom is the only reason I survived the summer. My escape from all the seeping scents. That escape no longer exists due to whatever new scent is being used, presumably coming from above, since it shares no walls with any neighbors, making it more insulated. I cannot survive a summer without the safety in that room. That means that this spring should be my last here in this home.
-The living room air quality is now more tolerable much of the time in the winter, but very difficult to heat with space heaters. The space heaters are overwhelming our electric system, contributing even more to the sinking ship feeling. When the living room fuse blows, I can't fix it myself, leaving me without power and helpless. I can't warm my space. I can't turn on lights. I can't run the microwave/tv/dehumidifier along with the heaters and purifier. And this is all before bringing in the bigger purifier that I am still waiting on. That will use more power. I can only hope that it will allow me to open the windows less, and then I will just give up on heat. But that scent is so much to overcome without ventilation.
-Access to fresh air brings me back to life, brings me calm, brings me peace, brings me energy, brings me coherence, lessens my pain. It proves to me that buried underneath everything, I'm still me in here. But it is not available most of the time and so rarely fresh enough.
-CVS Refill BS-- Causing me so much unnecessary stress. Not even worth sharing in detail. Just absolutely inept people doing their job poorly and making my life so much harder.
-Glasses prescription BS-- I will be going back into the building that harmed me so badly last year. I cannot imagine how I will make myself do it or if I even should. But I feel like I see worse all the time. But how long will it even be before my vision changes again? How long will these glasses last? I've already waited almost a year since the first vision change. When will the left eye change? And how will I go about dealing with that?
-The shower leak is an ongoing and progressive issue. The moldy smell after showers keeps getting stronger. I am not sure how much longer I'll be able to use this shower. I already don't go in there more than I have to. I brush my teeth in the kitchen to avoid time in the bathroom. The mold issue is surely contributing to my progression, although fixing the plumbing leak will not undo the spreading mold damage in there. More sinking ship feeling.
-I will sometime get my computer repair done. I don't want to send my PC away and risk having it coming back scented. But it will get done.
-There is the ACT (Acceptance and Commitment Therapy) clinical trial, although at this point, therapy is feeling more like a luxury than a necessity. I'm already accepting a whole lot of shit about my situation. I'm not sure I have time and energy to devote toward accepting it "better."
My body is part of the sinking ship as well. Degeneration on all sides. My back pain that was made so much worse by a simple exercise is one of the latest examples of this. And that back pain is a result of my fusion causing me to overuse lower parts of my spine, making it unstable. And since then, I've had a drastic change in my knees. Something has gone wrong. They are very difficult to bend past a certain point, and kneeling is no longer possible, but neither is crouching. Getting up off the floor is getting harder.
My body/brain reaction to using the heat for those 7 weeks was a shocking realization. Maybe there is some degree of a gas leak, or maybe I'll never tolerate gas heating. I can never go back to that state though. I cannot go back to the horror of that type of neurologic episode if it can be avoided in any way. But the reality is, any number of things can put me back there. Any number of triggers could cause that type of state. I can't avoid most things in this world, because I have so little control.
The problem with my rectum also feels like a devastating progression. Being unable to pass stool without applying substantial external pressure, I can feel how stretched out it is. Just like my stretched-out bladder, this is a progressive problem.
The migraine being in my teeth/jaw causing problems eating is just another impossible-feeling problem, although my sense is that it will keep moving around. But this pain came with the upstairs scent, which is out of my control and will continue affecting me to some degree for the foreseeable future.
All of this contributing to my current obsession with the analogy of a sinking ship. It seems that a change in housing is the only path forward, but with my reactivity to nearly all humans, fragrance, food smells, heating systems, and building materials (paint/varnish/anything newly renovated) makes this feel completely out of my grasp. But if I cannot achieve it, it seems that that would be my doom. I do not see the path forward. I cannot even fathom how to have smaller repairs done around here, much less face the outside world of all uncontrolled variables. I don't see a way out, and I'm going to drown.
Then, I have my go-to devastating fears and pains that pile up in me and constantly weigh on me.
-Grieving my Wilma. Being without her and her kind of company for the rest of my life. It still stabs me when I think about it.
-Grieving Grandma. I will never stop missing her.
-Fear of intolerable pain with no pain management. I already get close to this quite often.
-Fear of being trapped in the migraine with brainstem aura and disordered consciousness state without being able to eliminate the cause, like I did when I discovered the heating problem. That is not a livable state. That is a degenerative state.
-Fear of untreatable conditions with no preventive care or treatment possible. What happens when I get an ulcer or a kidney stone or a UTI or whatever it may be? Any infection. My tiny circle protects me, but they can't control everything either. My body becomes intolerable when I even catch a cold.
-Loss of mobility and cognition
-The world feeling very hostile to me, since my environment attacks me constantly as well as the people in it causing me harm.
-Having no safe space but with the impossibility of finding a safer space.
-Mom aging is the ultimate doom. Aging is fine, but losing her one day is not survivable.
-I strongly believe that the time will come that euthanasia is my only option, but I don't believe I will have access to it when I need it. And that time feels closer and closer every day.
How am I to go on? I'm cold. I'm scared. I'm beyond tired. I'm trapped. Mostly, I survive one problem at a time, but there's never only one problem. There's always all of these problems, all inescapable. Trapped in this apartment and this body and this life. This sinking ship.
