For me, the entire day is a racing against time, against sleep, to try and get things done. There are people who need caring, and I do care deeply. I cry for others because I don’t know how to cry for myself. I know what it feels to be alone and pounded daily, to have acid pouring down from people, from faceless organizations, raining acid. I want to save anyone from having to feel what I feel. I act, I reach out so that no one will ever be me. Never like me. Because I don’t know how to stop the pain, and emotional pain makes my own body ache, the bones old and brittle, the body ripped apart and set on fire until if feels like the skin holds only a shell and smell of ash.
I want others to smile because I rarely do.I was to see a cat on Wednesday, but that was cancelled by the cat owner. I don’t see people. I have not had an eight hour night sleep in over a month, or a six hour night sleep in over ten days. I am not getting better, as I require 11 hours sleep a day or systems will fail and the most common is oxygen. So it fails, and my muscles cry from oxygen deprivation.
Because the body is a survivor, it rips oxygen from anyway or any part it can, from muscles from organs, from the structure of cells themselves, leaving them broken and oozing. The pain it leaves is exquisite.I cannot remember a time when I did not lie for a hour or more in pain instead of sleeping, where I did not wake after two hours in pain: the pain that would make me pace or walk to endure it. But I can’t walk so I just writhe in bed, and cover my mouth so as not to wake Linda. At times, when I can’t stop moaning, I have begged for a gag. I cannot stop suffering but that doesn’t mean Linda has to.
I have chosen living because living is choosing. I try to clamp off my body, which shrieks pain in my bones, my joints, my muscles, my skin, lungs, heart, organs every minute I am conscious, and often unconscious.
As I was recommended by USA specialist and Canadian doctors to have better pain killers in April but my wait for an appointment for the pain clinic was cancelled. So the seconds pass in pain, 1, 2, 3 until 60, and the minutes until 60, and the hours, and the days, and the months and I am still in pain. If I did not have pain, I would not if I was awake.Here is a dream I had recently:
I was a detective, and this man was in a frenzy because his wife and baby were missing, and off he went with his gun. In trying to find out the solution I ran into people, one shot me in the shoulder, another stabbed me, and another broke my foot. But I found out, and I found the man who had taken over an office meeting room full of people. So I confronted him, bleeding and limping on a broken foot, and in the way of dreams it was both the boardroom and his bedroom. He had set his wife and child on fire. I got the people out and confronted him, trying to tell him that the bones on the bed were his wife, and he had killed her. That is why she was missing. He set fire to the room, trying to block it out. So I stood in the fire, cradling a dead baby, burnt, the black skin sloughing off in my hands, slick from mucus and slippery, the face sliding off and showed him that the baby was dead. Talking to him while I burned, the flames obscuring my view. I burned on, and on, and even after he put down the gun I kept burning, and the pain of it, radiating everywhere woke me.I lie there, the pain the same, and realize that my maximum strength pills for sleeping had worn off early.
Another dream I had recently was where someone take a sledge hammer to my hands and feet. These are not nightmares, not the burning, not this as I feel no fear, it is just, ‘Oh, I wonder how I will escape now that my arm is broken, I guess I will drag myself.” And then they used a hacksaw with my feet and eventually cut them off, and I thought only, ‘I wonder if I can escape on the stumps.” Why would this be a nightmare as how would a stabbing or shooting make pain more?
Why would I fear someone making me feel what I live every day? I saw a movie with a plane crash and people were burning, part of their body on fire and they were running and screaming, even avoiding help in their screaming. I could only think puzzled, “Why are they screaming....that doesn’t stop the pain?” I guess, if they would show it, I would be the person on fire hunched over a desk, doing.I tried screaming in the first while, maybe months, maybe a few years and some times I do scream from the pain but now, I look at my feet and wonder which toes are broken and then have a shower, what is the point?
I guess I am surviving, except that I don’t know if I have the most basic level on Maslow’s hierarchy of needs: love.
I suppose it is hard to see the love when a hug puts the pain so high I pass out. When touching me sometimes makes me stifle a scream and a ‘sorry about that’. It is important to be polite.I have been pounded emotionally on a daily basis for at least three weeks. I have had hope taken away. I have been turned into a non-person. My actions of buying, my desire for manga is a form of nesting I do....a last resort to find an escape, an emotion or feel emotions I don’t have, even for a time. The last time I had collected 25 DVD sets to watch, to make sure I was safe, but that didn't build a wall to stop the emotional pain and so tried to kill myself. And Linda kicked down the door, and later I tried to kill myself,
and I tried to kill myself until I had a safe room with no way to throw myself out; where Linda could lock me in, with books and other things but nothing I could hurt myself with. And I had a contract on when to put me in the safe room.But here, and now I don’t have a safe room, or a contract, just pain and a life without hope medically: no GP, no specialist, the approval for IVIG but no one will sign to say, "I'll give it." I went to the doctor and they would not look at anything, not a bruise, not a vaginal sore, they said, 'you need to go to the ER', they don't deal with me except for prescription refills anymore. I don’t get my medical treatment at a walk-in medical clinic but at a pharmacy. The rest just goes on, or rots, if there are bruises or breaks. Without hope.
I am so far from joy that I don't know how to even consider it.
I’m sorry. I think I am a disappointment. I’m blogging every day because I said I would. But I don’t know if the phrase ‘better’ makes sense in applying it to me.
I still try to collect manga, even if I am too frantic or too much in pain to read it this moment in the hopes that I can find a place a space where I can and I won’t kill myself. Is that hope or survival?
I cannot think of autumn and winter, of snow and rain and being inside and with frostbiten hands.
I am not joking as much anymore about the indignities and pain. I cannot think about it because I am climbing mountains every day just to stay in the living and the struggles of winter is too much to think about. It is the alps and I don’t know if I can want to imagine things getting so much harder, so much more painful.When I wake in pain there is nothing Linda can do.
So I lie there until there is no skin on my bottom lip from biting and the pillow is wet from the tears that run down the sides of my face.I want to fight for life, for living.
If I have a disease so rare, then why not be the person who is also so rare in the statistics that I live on for years. Except I can’t imagine this winter. Except my heart and lungs were collapsing this morning. Except that I had help breathing yesterday, and the day before. Not help with oxygen but the breathing too. The pain of breathing is like running your little toe at full speed into an oak table. It hurts like that to open my ribs. And I have to do it, consciously, breathe in, try not to scream, breathe out. Until the pills kick in and I sleep. I wake 90 minutes later begging for more pain pills. I have given up praying for no pain, or even for death, I just pray that Linda can sleep.
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