I haven’t been able to rest for the last week because earth movers came in with jack hammers and trucks and heavy machinery and took down the house across the street. The next two are slated to go as part of a development scheme that passed through before I got sick. This shady side of the building apartment; now fitted for my survival will soon go.
I don’t know where I will live, but I know that without the sleep, I am only awake a few hours a day, and not healthy during those. Each afternoon, waiting for sleep, I fall semi-conscious. An hour I only breath 20-25 times is not a good sign, it is not a good daily sign. We have talked to the developer for whom I am sure there is always ‘discomfort’ or as one manager said, “You don’t HAVE to leave, you are choosing to leave.”
I pulled off one of my winterized gloves (I had severe frostbite in the 60 degree weather the day before, and before that), and one hand one was green. “Do you see that, that is a body desperately trying to shed heat, only it can’t. The next stage is heat exhaustion, the next is coma.” I pulled off the other glove. I held up my hand, which was purple next to theirs, they tried to recoil. “This is a sign that I do not have enough oxygen in my body. If I do not sleep every few hours, my autonomic system fails.”
“Well there’s no place for you here.” They said and shut the door. I am tired of people viewing the never ending work of staying alive as a choice or an eccentric attitude. There are three consistencies which make up my day: 1) Any and all autonomic systems can and will fail at any time; 2) I will have no memory and 3) Every day is variable and I begin to weaken the moment I wake up (if I get only a few hours sleep due to earth movers, I wake already weak; if I have to stay awake 13 hours day after day, because of earth movers, I start to fail in dramatic fashion). The hospital can’t save me. No one can save me but having stability and consistency. I should put a 4) Every single thing is a variable of stress, from sound to movement. Each variable adds and accelerates the daily degeneration. If I have noise all the time, my muscles tense, I tire, I get headaches, what failure might occur in 5 hours now occurs in four.
Number 2 is critical as I do not know. If there is someone on the phone and they want to know something that is more than a few minutes to hours old, I do not know. The more fatigued I am (which happens twice a day, right?), the more difficult it is to remember even the last few minutes. I spend time reading, and repeating and trying to remember. If you ask a question, the answer is, “I don’t know.” But I can’t say that. I am asked questions all the time. How’d things go with the doctor? What do you want for lunch? What do you need? What time did you get up? Did you file those disability forms? Did you get that letter from…. – I don’t know, I don’t know, I don’t know. I don’t have control over it, I just don’t KNOW. I wish I did. I don’t know when the trucks first arrived. I don’t know how long they have been using chainsaws every morning (7:30 am) and working until past 6:00. I don’t know.
All I know is that I cannot remember what I need to remember to keep myself alive, I have some things on my ‘brain board’ and I know some times, and there are some lists but that is why I have care. They can tell what I cannot feel (As I cannot feel much of my body at all), if I am too hot, if I am cold and clammy, if I am going into shock and take action. It is 11-14 degrees (54-63 degrees) and there are two air conditioners full time and a fan going to try and keep me alive. I don’t know how much oxygen I need, I don’t know what to do sometimes. I feel very bad, and fall to the floor, and I know this means something but I don’t know what. I don’t remember. I don’t remember what to do. Time continues and I still cannot sleep, I am sleeping in the hallway using the rooms as another sound buffer but it is not enough. The heat is making me pass out, the sound is keeping me awake, my heart is faltering, my lungs faltering. I overheat, I can't feel it and don’t notice.
My home care has fallen through and right now I have lost all night shifts and am down to two workers who come some days. I forget to drink, I don’t eat, sometimes for days as Linda is working again now. She finds me, and puts me to bed where I sleep and sleep and wakes me before she sleeps. I do not remember how I came to be on the floor. I try to write down what calls I received and what they wanted. Remembering, crying in frustration, talking are all stressors, I get worse; my memory gets worse.
I wish, for the days when I was an equal human, and I could with others take a chosen break, to rest and relax. I want to go on a date. I want to spend time with Cheryl and Linda that isn't like an ambulance ride. To enjoy the things like a hummingbird I saw today. Where? I don’t know. When? I don’t know. Every ten minutes I have to check my health, every ten minutes someone has to check my health. I don’t have a place to live, I don’t have the finances to move even within my own city or a few blocks. I wheeled this afternoon, in desperation trying to find a block WITHOUT future construction and with the rarity in this town (level entry – or no two stairs after the entry!). I don’t want to leave this neighborhood. I need a top floor two bedroom apartment on the non-sunny side with quiet. I need a place for the hospital bed, the two oxygen regulators, the grab bars, the wheelchairs, and then of course a place for Linda and a place for the over night worker to sleep. I need it to be the same price. And yet, I don’t know how I am going to find it. I will call city hall when I get up and am most rational, and don’t slur and don’t say odd things, or forget my name and find out if I can put an injunction on the building until they find me a place. Since the disabled and the dying have no rights in this city but a developer has many, many right, I doubt that will come to much.
This apartment is where I have lived in Canada, this is the place I know. When I get confused, I will keep trying to come back here as this is home. Even if I find another apartment, they will probably find me out here, waiting by the door. That is, if I manage to survive the summer. I am trying to get well enough to see a doctor, as going in with severe autonomic failure doesn’t help; they have the paperwork, and they can’t fix that. I want them to focus on what they can fix. I need to get well and I have to move. I need stability and consistency and I have no home, no home care. Hypersomnia isn’t a choice, it is a medical condition. Leaving isn’t a choice, having all of this isn’t a choice. I suppose it would be easier to just be a bit less planned, a bit less smart, a bit less proactive, and wait on the medical profession and thus die. Wait on the kindness of the landlord, wait on the kindness of the builder, wait on others and die. Every day, the moment I wake, I get weaker. Every day, if I don’t work and fight could be my last day, it is my responsibility not because I want it, but because no one else will help. And when I am too fatigued and thus mentally incompetent, if care is not there, then there is the potential to die, or I wait, or I sit, because I don’t know what to do…..because I don’t REMEMBER, until Linda or someone comes.
I know that the people having vacations or ‘personal days’ or forgetting to get back to me are not heartless, it is just no one can really believe that someone can go into complete heat stroke coma in an hour and die a few hours later. And that they do it in their bathroom, or while sleeping. No one wants to believe that as the lack of oxygen spreads through the body and cells themselves have it ripped from them to feed the pain, it makes pain and weakness, which put the body in a balance which is not externally sustained, will terminate. And when someone calming, or not with a certain intensity shows them, in front of their eyes that it is already happening, that I AM already weakening, already dying TODAY, and that I am out trying to find a way to stop that from happening…..they close the door. This is not what they want to know. They are not evil or heartless, they are scared, and it just cannot register or believe. It is in the same way something like the spread of meningitis in Wales, where headache in the afternoon, fever and dead in the evening doesn’t register. “But I just saw that student yesterday…..they looked a bit flushed but……”
I don’t know if I will be pushing myself ragged trying to find SOME stability, SOME place to live where I feel safe, where it is quiet, or if I will try to rest up enough to begin treatment to prolong life. “For what?” Is what I silently ask some days. We have to move because of me; if I could find a job, I could, like Linda be away during the noise. It would be a mild annoyance. But no, in order that I live, we have to find a way to scrape the barrel bottom for moving funds. So more garage sales, more calling around to managers, who call legally refuse to rent to me because I am in a wheelchair (Linda will do the looking, I will wait until AFTER the lease is signed to appear – that is the role of lepers in society). Either way, I want to be smiling, regardless of pain, I want to be the person who writes happy notes, but…..13 hours of multiple chainsaws 30 feet away? For as long as I can remember. Is it not easier to simply stop checking every ten minutes for something I might not remember how to fix anyway.
I miss going outside. I miss picnics or looking at flowers. I miss knowing that I would live here and that this was home. I miss knowing that I could focus on joy, instead of having to play at adult, a game I tend to fail at more and more often. I like watching films now, as even the most minor character gives me a feeling of nostalgia. Of knowing something beyond, “I have woken up, is that AM or PM? Am I half way perked up in my daily weakening or has it begun again. What do I have to remember? What happens if someone calls? What happens if someone knocks? How many hours have a slept, do I know? No. What DO I know? I know this isn’t my home.
11 hours ago