I wonder about when ‘those things that must be done’, the horrid things and the tedious things that it takes to keep going and allow my life to continue somehow BECAME my life. There are times when maybe they are part of my life and there are ‘survival times’ when it is just that: surviving. But with my memory problems, it is soon that all I know, in the smallest fibre of my soul is that I am devoting my all to keep the organic systems that still kinda work still working: spinning plates with shaky hands.
I am in the tail end of more than a week of a heat wave. It is hot enough and long enough that I all know is this little room and the air conditioner here. I sit here in Indy and sleep in the makeshift bed beside Indy because outside this room, the apartment is in the 80’s to 100 degrees plus. And outside, the heat extends another two days. Going to the bathroom is a preparation in endurance, because the heat makes me fall over, fall down, limbs not working, brain not working.
Heat hurts. It is like having salt blocks weighing your back and limbs down: grinding your joints, making the muscles scream in stretching, creating invisable sores. The body aches, it cannot stop from aching. Even in the little room it hurts. I sit in front of the air conditioner and I am thankful that it is not worse, and I hope that this time I can keep my sanity. This day.
Four walls, and an air conditioner which sent me into tears for half a day because the compressor wasn’t coming on. And if the compressor didn’t work, I didn’t have anywhere to go, and it just got hotter. Each day my gut was full or more air, my lungs not recovering, purple hands and arms all the time, because of the room and the limitations of the temporary bed.
This is supposed to me telling you why though I am doing four hours of research a day, my blog post on Oregon is still coming. This is my fourth time and second day writing this ‘short’ explanation because I don’t know how to make the surreal real or make it so readers know that a clonic-tonic seizure hurts every time, and so does heat exhaustion. And my lungs are tired of breathing. And I am tired of reminding them. Because I asked Linda last night, “What goals do I have.”
I drag myself to the bathroom and back to bed. I did it backwards yesterday because I didn’t know if I could drag myself forward anymore. I spent the hours needed to evacuate my intestines and I wasn’t well. The night was pain and I woke to a fast pounding heartbeat of blood desperate to trigger the sweating, to cool me, but it can’t. I had a headache, a fever, nausea, dizziness and skin that was actually grey. It was full heat exhaustion and I could barely move my head. So I did a little research and resizing of photos on the Oregon blog post until I couldn’t see right anymore.
Then I lie back because I knew I wasn’t going to be able to lift my head again. That day, I needed help lifting my water to drink. I lay there in Indy, until sleeping, then dragging crawl to the bathroom, and then back into THE room. That was a long couple days.
I want sick leave. I want to be allowed to relax and exist as a sick person, instead of just being ill. I want the luxury of being depressed. But I can't. Because even sick I have to remember everything, from what pills and medication when (now 10 different times a day), and drinking always, the same water, three to five liters a day or more (now you know why those Brita filters on the wishlist are important to Linda - try sucking down five liters of gagging gross water every day: try watching some you love having to do that). Even when I can’t lift the bottle, I have to drink. “Are you a quitter McClung?” my inner coach yells at me, “You want to spend days living with consequences because you are so lazy you can’t do what you need to now?” Any insult as long as it works. Oh, I am tired the hurting heat brings, and my brain and the world but I drink and count and take pills (and then try to take them again because I forget and have to be stopped, or panic because the pill container is empty); I check about the visits we need to make, the forms to be filled. I can’t lift myself into the wheelchair but if I don’t get the toxins out through my pee, they won’t come out at all, and I drag myself to the bathroom again.
Last night I was so weak that I couldn’t move my head, couldn’t turn it, and it had fallen to the left. I woke four hours later with it still there, not a movement of a muscle on my body during sleep, I was so exhausted. But it was time for me to pee, time to drag myself to the bathroom. And then I would sleep some more.
I wonder if this is why others with this disease die and I don’t. Because they took a day off? Or they took some afternoons off until they could only lie there, unable to do it anymore?
Linda, when relaxing reading a book, or job searching goes to bed three hours late. She can’t remember a time when I just kept doing stuff because I was having fun, just gave into temptation. She can’t remember a time I slept in during the last two years, not when I wasn’t unconscious.
And during this I still work or plan on going out, on working hard. Even though I can’t get better, can’t regain function, I can only slow the degeneration down. Loss is when things are out of control and we hang on and see what is left at the end of it.
I feel like I am on a small sailboat and everyone I know is on a cruise ship ahead of me. Their life moves on, things come in and go, relationships, plans, sometimes they just don’t have time anymore, and they stop coming to the back of the ship’s deck to yell things to me. While I am in my little boat tossed about by the wake of the cruise ship, but trying with everything to keep up somehow, to be someone they would want to be part of their lives. But the reality is they can't hear me, not way down here, and the sound of life, the waves, the wind. That's what the blogging is, trying to do more, trying to show that unheard doesn't mean gone. I bet a lot of you know that frustration.
People up there, way up above the sheer walls of a ship, say I am inspirational. If that is true it means they are inspired to places I can’t go, to lives too busy to include me. When for me, THEY are the ones who inspire me: to keep going, to keep at it because I don’t have blood family and the one place I want to be is up there with them, and it is the one place I can’t be.
We should be thankful for the trivialities and little choices in our lives. I don’t want to stay alive, I want to LIVE. And if you don’t know what the difference is, then you haven’t fought for it.
I watch the TV show Mercy which came this weekend. It is written by a woman and I can relate to almost every patient that comes in; the nurse with PTSD and the chronic illness, the degenerative illness, the anorexic. When the main female nurse finds the girl at 11 who has been pimped out by her mother she goes in and punches her screaming, “You did this to your own daughter!” She faces hospital discipline from the (male) doctors and says to her friend, “If I was a guy, this wouldn’t be a big deal, the police didn’t see it as a big deal.”
Her friend says, “Yeah, ‘if I was a guy’, but you aren’t and now it is just on how to get by.”
I do laugh at the doctors on the show when they say that doing an operation on someone with an oxy-sat of 90 is ‘too risky’ because my oxy-sat was in the 70’s over a year ago. That’s a doctor view, an organizational view: ‘too risky’ – when your life is what it is, and you have to keep surviving, there is no ‘too risky’, no matter how scary it is.
I watch Linda struggle with finding a job, taking care of me, trying to find a program to fund some of the pills, to deal with everything by herself. I get frustrated at my helplessness. I am told, “It isn’t your fault this is happening.” But it doesn’t feel that way. I want to put myself in a coma and get out of her way, only I know that doing stuff like that would just make her life harder. And love is making sure you don’t make their life harder if you can avoid it.
One more disc on Mercy and then I have to sell it, hope to get half the price needed for the next DVD set. Or maybe use the money for the water filter replacements we need. Always more water. Always more Florestor needed.
I don’t know what people I do. I don’t get depressed and lie in bed. I don’t feel sick and lie in bed. I don’t lie in bed reading. I don’t lie in bed watching TV. I work until I can’t move, until I can’t think. I work until the pain is so much I don’t make sense any more, and then I watch a DVD set. Because engaging means less pain control, which is less cost for Linda and less pain for me. Engaging means more language routes in my brain which matters when there are a lot of seizures and strokes. Because I am the expert of my illness and need to be able to write (though often backward) what to do to home care or Linda in order to help me.
Sure, sometimes I stare at the wall, or at nothing (that’s called a seizure!). Sometimes I stare at a wall because I am paralyzed and wait until someone comes who get that I need to have my head moved, and headphones on and a DVD in the computer. I have done the wall staring too often, and recently had a six hour stint of wall staring, unable to move, except for a thumb. And that isn’t much help. And after six hours I slept, and then, for an hour after waking, stared again. It is a boring wall. I have sussed the literal, metaphoric, symbolic and intimate meanings of it. And that is WITH a fuzzy brain. So yeah, I always need DVD sets. That’s what the DVD sets on the wish list are for.
The manga is for the bathroom, where I have to spend at least 18 hours a week to stop from getting impacted. For the rest of the time, I am doing: trying to get done what used to take 10 minutes in two hours. I went for a wheel up to the library to pick up some holds and hurt the right ribs, the OTHER side of my ribs. So that was sort of funny for the first 10 minutes. Too much to do, the aggressive defense of keeping a life, instead of being alive, even if that is just two emails during the three hours I am functional. And the things put off, that need to be done because they didn't get done before I passed out or had a seizure, or just couldn’t move anymore. “Time to watch something.” Linda says then.
So that is what those manga, books and gift certificates and DVD sets mean in my life now. They mean I don’t spend the time staring at a wall. Everything doubles up here, even ‘entertainment’ has to have at least two functional uses. But more than anything, it means I have something to look forward to. Going into the hottest room in our house for three hours to be rocking back and forth and HOPE that the intestines are producing lubricant (imagine passing gravel without lubricant….for hours!) is hell. No getting around that. But knowing that for the minutes I am not just staring ahead and hanging on, I have Biomega, or Lucky Star or something good to be able to read for a few minutes at a time can make the difference between crying for an hour while in the bathroom and not. Sometimes what tips the scale over toward sanity or just holding it together emotionally another day, or hour is a letter, or a manga I enjoy. Or rocking back and forth turning a DVD set box over and over again in my hands, then asking Linda to read the description, trying to imagine and anticipate getting through THIS, the thing that has to be done, and what good thing is on the other side.
And that is why I am so thankful for everything from letters to gifts and gift certificates.
I have to eat a pickle a day, as it irritates my intestines (which helps), and I loved pickles. I told Linda yesterday, “Oh, I was a kid and I loved pineapple, and ate it and ate it and ate it until somehow I couldn’t eat it for over 10 years after one gorging.” I picked up the container with the pickle of the day. “Promise me that after I die, I don’t have to eat any more pickles for a while.”
This is what passes for humor some days.
I long to take a break.
On the trip I passed out so often on the toilet, or at the end of the day and Linda was too tired that sometimes she just left me there, on the bathroom floor. What else to do? No health insurance for the US, no health insurance in Canada. So I am passed out. I am woken to another day, and I struggle and get up.
The shotgun in pressed against the back of my head. “Try or Die” it tells me. And I am not going to be the one who dies. Not this week. And not THIS heatwave. Not this month.
9 hours ago