My Body negotiations: Someone with Chronic Diseases Negotiations
By: Dr Alexa James
I spend a lot of time negotiating with my body as someone with multiple chronic illnesses. I feel I can’t go for days and I’m determined to never give up for days. The emotional range is wide. I was through all of them and I have a great deal of coping mechanisms. My inner dialog is one of them. It could be my enemy or my friend. I have a large number of approaches, because I really like it. The day depends on which one I use and how much they torture me. Some examples are as follows:
Approach Tough Love:
“It’s true? Can’t you work like an ordinary body?!?! I know before that you did it! Halfway you were willing to do that. Why can’t you just do what I need to do rather than be so hard? I know how.” I know you know how.
Approach to Nice:
“They’re hard, I know. It felt like nothing would want to survive, but this is something you can do. We had a rough week. Simply put one foot before the other. Come on.”
Approach to Negotiation:
“Come on, get up, take the shower, get it over. Then, for a few minutes, you can relax. Manage one small thing and I’m going to break you.
“It is true? Can’t a shower just? You once could do TWO work, AND go to school, manage a social life and don’t even have a little shower? What have you become?”
“This you have! You’ve had a worse time. That shower you can take. Just get up and move forward! Every day, woman, you fight pain. Compared with operations and other things you have experienced, this is nothing. Give it a grip!! Get into that shower! Get into that shower!”
The Approach I have Given up:
“You are pathetic. you are pathetic. That’s a DOWN JUST. Can’t wash yourself, you couldn’t. How difficult is it? Aren’t you really trying to be meaningless? I don’t know why I bother, but go into the shower, even if you’re now lame and weak. “I’m going through these negotiations, and more, on a very everyday basis. The latter is not something I really control. When I have all I can do to encourage myself, and feel like I have failed, that voice comes out. It’s frustrating and emotional, so all these various scenarios continue in my head. I do my best to stay positive, but nobody can always be positive realistically. Many of the people with whom we interact daily can forget that chronic diseases are challenging. We fight with our bodies while trying to maintain the apparitions we cope with when we don’t.
It’s uncomfortable that we spend a good deal of time trying to determine whether it’s worth living so we try to hide it. We hide our tears of suffering, despair, anger and frustration in order to make all the others all right. In my head there is a constant internal dialog. It’s usually about trying to talk about how my body functions or trying to convince me that despite my feeling I’m not worthless. It sometimes persuades me that somebody deserves my patience and understanding. It’s an ever-changing ripple of emotions.
A typical day can go something like this:
At 3 am, when waking up, there seems to be no reason for ridiculous pain:
ME: (eyes opening through my body when pain shoots) “OW. Oh yes? That’s so, now, huh? BODY: “It’s safe. Well, good luck with that. “ME,” You’ve just been stuffing my hips with a big knife like someone? At 3 a.m. when I am just LAYING DOWN is this necessary? Can’t you just be glad to rest? “BODY:” Simply wait until you really feel it and just sit up there. Will be an enjoyable one. Muahahaha “ME:” Super. Much more. Thank you. Thank you. Enjoy this.
20 Minutes Later
BODY: “Now you are completely awake……” The room will now begin to spin. BODY:”……….” ME:’ Nothing? Fabulous.’ Do not comedies snarky? “BODY: Wait. I:” Ah, I see. Wait for it. Heat and severe nausea flashes. You’re finished yet? BODY: “Don’t really do. You haven’t learned I’m never finished yet? “I had been hopeful that we could only quickly get it over so I could move on.” BODY: “Pffft.” Hang it up for a while. Nope.-Nope. What’s the fun there? “It would certainly be more fun for ME to get through it quickly. BODY:’ Well………..’ ME:’……….’ I want to feel halfway normal rather than tortured.’
45 Minutes Later
BODY: “Hey. Hey. ‘ My goodbye? ‘” I: Oh, oh, oh? Have we now changed? BODY: “How cute. About Time.” You believe this change is going to like you. Oh, oh, oh!
Uncontrollable shaking while lying under four heavy blankets after at least 30 minutes non-stop:
BODY: “You’re having fun? BODY:” Hahahahaha. “Go away, I know.” I’m going to stop here. For the time being. “Too weak, too weak. Enjoy the aftermath.” Later I’m going to talk to you.
About an hour after passing out:
ME: “Is waking up still safe? BODY:” Perhaps. Perhaps not. Not perhaps. I: “You’re so precious. Try it and see.” Well, that’s know? “I know. I know. BODY:” Normal pain so far. Will a catch be there? “BODY:” All right. ME: “Argh.” We’re going to see.
A few hours later when I have to get up and be productive:
BODY: “Whoa, whoa. What do you believe you’re doing?” Me: “I can’t go to the kitchen downstairs?” BODY: “Good, no. There was still nobody telling you to move. ME:” Hrmph. BODY: “Too bad.” I’ve got things I need to do.
An hour later:
ME: “I’m still able to move? It should be enough for three hours of rest. BODY: “I think it was all I did. But don’t get too excited. Don’t get too excited. “Oh well, thank you so much for your goodness.” BODY: “Would you like absolutely nothing to do today? You want nothing to do today at all? MY:”…….” Keep it up.
After it was placed in the kitchen and half the dishes were done:
BODY: “HOLDING!! This is sufficient of it. You’re trying to murder me?!?”I:” Thanks. A sink filled with dishes, I did like. This isn’t about killing you. BODY: “It’s, yes. That’s essentially nothing.” I’m no longer able to cooperate. The next dish you touch, I’m breaking. You know I’m going to do that. “ME:” Okay. BODY: “Shutup. Spaz.” BODY: “Lay down.” BODY: “Well, it would help if you would make stairs easier to get up.” BODY: “Ha! I’m tired.” You want the world! You want the world! Get over it! Get over it! I would say “Grrr” to Crawl if you must.
Upstairs after the restoration to sleep:
BODY: “I don’t want to lay on that side.” ME: “I just might have said that instead of sent my left side piercing pain.” Me: * Eye roll * Funnier this way.
20 minutes later:
BODY: “There’s no longer I want to lay down.” Will you let me sit up and get sick? “BODY:” Now, you know that all that I can’t be. ME: “With whom exactly is the reputation? BODY: “So? You are living in my head. “It happened to you, what happened to me?’ You were only moderately hard. In your old age you got so bitter? “I’m bitter, BODY:” Yes. Very bitter. -Very bitter. Now pay. ME: “Great.” Now pay for it.
About an hour later:
BODY: “Too long I left you alone! This is some more love. I: “No thanks. I don’t know. I’m all right that I’m neglected. Doesn’t need AAAAAA!! Are you?!? You want to move Right now a kidney stone? From nowhere??I said: “Oh, you thought that I needed no rest since you gave me soo much sleep last night? I’m so bored and you looked like you were too peaceful!” I said. “BODY:” You could handle it,Nah. BODY: “Love you,”* a huge smile*, “I don’t like you.”
Four hours later (the kidney stone was fighting all the time):
ME: “Hey, what’s the pain up? BODY: “Well, the stone was a little stuck. It’s out of control.” All the tissue of the scar, you know. You will do something about it. “ME:” You kidding me? You guys kidding me? You began this, how did you deal with it?”I’d like to do more things than me.” BODY: “I’ve got better things to do.”
After a lot of water drinking & moving, two hours later:’ME: BODY: “Oh, you got it taken care of at last?” “Finally.”I:” I do. I: BODY: “I don’t know about you, but I’m getting pretty tired. I don’t know about you. “Think it is time to get to bed. I think this is time to go to bed.” It’s just 6 pm and all day you gave me a tough time. I’m not going to sleep now anyway. BODY: “Sleep.” ME: “No.” I need a little time to recover.
This goes up and down until after fighting to keep my eyes open all the time I finally get into and go to bed. Then we usually start again with a number of medical problems and symptoms. I usually imagine the sarcastic kind of part of my body which has nothing better to do than harass me. It sounds crazy, I know, but, hey, we all have our mechanisms of coping. It’s a constant struggle of different degrees.
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Some days are worse than others, but no days are really what someone used to be healthy would call “the good.” The majority of days are as described above, or I spend the day discussing with myself whether I go slip into bitterness or depression internally. In this series, I’m going into that a little more. Only the first installment. These are the real talks I’ve got in my mind. I decided to put them on paper since I also understand that others are fighting in a variety of ways with their internal dialogues. Part 2 is available on my personal blog (writtenbydida.com), Click here to read ” Negotiations with my body Part 2: A letter to my body”
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