My mistake was in thinking that a cold or flu now would look like something I recognized. Or that the three deaths for autonomic deaths: pneumonia, heart attack and suffocation, were something that happened separately. Now I know better. And what it feels like when 'The Man Comes Around'.
I learned, barely, what chemo and other survivors already know. That when the nausea is so bad, and so long I couldn’t remember a time before it, and the aching, the pain, the weakness that the easiest thing to say, the greatest temptation is to say "No." Because there is always some new horrific and painful thing that ‘should’ be done, or ‘needs’ to be done to increase survival chances, but at night, with them changing the cloths, and a fever of 104.8 while my entire body is covered with goosebumps and shivering, that’s all it is…..a chance. For about 36 hours, or 42 hours the question of would I die or not was THE question. I was terrified, Linda was terrified and there was no hospital or team or drug or anything that would save me, I either woke up a little better or I woke up with my lungs full of liquid or I didn’t wake up at all.
"Oh I’ve had a cold/flu/bronchitis/pneumonia" people will think, but that’s from a perspective of having an immune system that works. From having reserves. "It’s not the same." Linda said, "They won’t know what it was like." Maybe, but I’ll try.
I got home and the first symptom was a slight sore throat I guess on Tuesday, the days get mixed up a bit, a little because it goes in the ‘illness blur’. I’ve worked retail and I’ve worked big venues and one year at a multiplex I got 14 colds, I have always been susceptible to infection and with all the years in retail have had over 100 colds/flues and a couple cases of bronchitis. What happens is I get a tickle, it turns into a sore throat, the throat gets worse as I sleep instead of better, I nurse it along for a few days and I ache and just as I start to feel better, whammo, head the weight of a bowling ball, as the sinus’ are filled with mucus to come out. It takes me 10 days on average.
I had a tickle and thought ‘sore throat.’ But in five hours, my whole throat was raw all the way down to the bronchial opening and the pain was….extreme, and I was unable to talk, my vocal cords were simply non-operational, even to whisper. And by the morning, my upper respiratory tubes had inflamed, mucus of congealed dead cells was coughing up or blocking breathing, my large and small bronchial tubes and lungs down to the sternum were all inflamed and swelling shut and I was on the full oxygen mask. That was the first 12 hours or so. Purple fingers, waves of weakness literally knocking me unconscious, needing to swallow something, but unable to eat, and lying there, without the strength to keep my arm from sliding off the bed. That all in the time I normally go, "I might be coming down with something." And if it is moving quickly go, "Oh dear…I might be getting a cold."
My heart beat had gone up to 120, and stayed there, awake or asleep. I had no idea how to bring it down since beta blocker didn’t work, and my pain pills would lower my respiration even lower, so feel the full lash of the storm, or hope that in the next 12 hours, my lungs get better?
When my kidney wasn’t just hurting but bulging through the skin of my back I knew it then. I had dropped extra weight, and could outline the organ, tried not to lie on it, so painful to touch. I knew that this is what it was going to look like, this time or the next, or the one after. That even if they gave me medication it would need time to work and in five to 10 hours either I would be down to one lung with the other filled with fluid and mucus or not. Multiple organ dysfunction, lungs, heart still racing at 120, so long I would have died from that if I had not exercised so regularly, liver, kidney back-up, in shock and infections running rampant over my body, pus and blood coming out.
There were those minutes or long seconds with Linda beside me on the floor as I shook in seizure after seizure, or holding my arm when I couldn’t speak but only lie there. These were the ‘I love you’s’ The goodbyes because we both knew that this was what is was. I tried to say it, and because my voice was so mangled, she couldn’t understand. So I whispered it, "At least I went out fighting…" Yeah, she told me, now sleep, sleep.
This is the way I will die unless I am lucky. And I realized and she realized that the amount of stages between my ‘building reserves’ for Sakura-Con and now might have been 60 a year ago but were more like 10 or 12 now. There just wasn’t that much left to slide, until I would hang on a thread, waiting for the slightest thing to knock me over. And then my lungs WOULD fill with fluid, or I wouldn’t convert enough oxygen, or as I did, I would stop breathing. I was weak, I was helpless, you were there. I would not have lived this week if it were not for Linda. Thank you.
I did, I do live, struggle on. Realizing that in the worst pain, the worst situation, I only have to say ‘no’ and not do those horrid thing (I was sick for a week, I still had to take dumps, all the icky bits of degenerative disabilities), I would die. Not that minute, but soon. I decided from the engorgement that the toxins were not leaving my body and the medicine I was taking was only hurting my liver more (since it required my liver to break it down). So I drank water and peed, and drank and peed and drank and peed. About once every 90 minutes. I drank gallons. Through the night, Linda helping me, too weak on my own to pee, waking from nightmares to pee. And slowly, I got to a day when I could have a shower with assistance, and this was ‘better’. People always tell me when I have a heart going like a woodpecker, and part of my face sliding that I 'look great'. I look great because a) I don't sweat and b) Any time I recover I work out to build up reserves. Or is that just something people always say?
While I was out of it, a couple times this week, people in positions of authority had singled me out for discrimination and dropped the phone message bomb. Singled me because I WAS weak, and because I could not fight back. They threaten my health and where I can live for the months I have left. But I will go into that later. It did make me sad, to live in a land where the heads or managers of two organizations can illegally pick on me, sure that no one will stand up against them: because we don’t. Socially we let the bullies run rampant and think to ourselves, ‘That’s a shame."
I say that because a) it is true and b) I really do have so little left to lose, I am helpless, barely able to type, often to sit up and yet, people still think I am a threat because I do say that picking on someone because they are in a wheelchair is the act of a bigot and a coward. (Next post Beth, next time! Focus!).
I started some interesting manga series from Sakura-con. When lucid that is pretty much all there is, unless the noise of construction makes you all tingly. Queens is fun, as is Pearl Pink both saucy and light and leaving me wanting to know what happens next (good writing/drawing, I think), and I recommend Bunny Drop strongly! I put those and the books and supplies Linda needs on the wishlist. Thanks to those who sent a DVD. I got well enough to watch something today with Linda. Quality or not, this is the time we have.
Oh, I will get stronger, though I expect the next while will be hard. Plus all sorts of cracks and sores have opened up as well as flesh diseases running rampant (it seems without ANY defense, they really go crazy). I did some hacking away of toenails and digging out dead flesh and opening wounds for hydrogen-peroxide (yeah, did make the room spin, but it is one of those things that gets done, or drains my body using up cells, and resources).
Now, with two cycles of memory being only sickness, I have lost all the knowledge and rituals I passed on to myself every day, every couple days. I know only how to get my email and do this. Linda says she will help me with more, learn more, from the ruins. The month is Eagle. At least on the calendar here. Linda is reading the Pop children’s books to me, she reads the S.A.S.S. books for herself off the wishlist. The Stories of Ibis, another of Viz’s signature translation are the stories of a winged android to a minority of humans in an android filled world, seven tales creating a history of here to there. Which is like the light novel Keili (a girl in a post apocalyptic world who sees zombies…with pictures! Cool) – also on the list along with Volume 1 of this Beautiful and Ugly World (I got volume 2 at the con but they didn’t have volume 1, suck! Each week, I use what money I can to get a manga so the next week, my time in bed, in the bathroom has something to look forward to - the library books are running out.
I matched some postcards before I got too weak. Some presents went out, not as many as I hoped. But I try to reply to each postcard and mail that comes in and then more. I want people to know that every kindness is important. I don’t understand life up there, where what is on TV or going out for ….dinner, movie, a game – going out at all is possible. That isn’t my life. I know I live at the bottom of a well, a nice well, but still, not your life, and so I understand the kindness of slowing down to try and understand my life. Sakura-Con created some great memories for Linda and Cheryl. Sakura-Con, for me, the memories are already gone (remember that no mid-term memory thing). But I have pictures and notes, but no, bummer, the memories did not help during the illness, nor help still. Which is why things like Fear Itself: First Season are on the wish list – 45-55 minute movies from the masters. This weeks’ money went to pay for something. I wish I knew what. Thanks to the person who gave me UK amazon gift certificates, I got Being Human Series 2 (here in 2 weeks).
I lie here, I suck oxygen, I feel like throwing up because my heart beats too fast and the medicine stopped working, I feel funny and pass out because my lungs stop working. I am getting better. Slowly. Linda didn’t say she was terrified. She hates to say that. Hates to say that there is nothing she can do and she is frightened. I want to protect her, and I can’t even protect myself. This time the dice came up "live." I'm glad.
4 hours ago