Negotiations With My Body: Inside the Mind of Someone With Chronic Illnesses

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As someone with multiple chronic illnesses, I spend quite a bit of time negotiating with my body. There are days I feel like I just can’t anymore, and days I’m determined to never give up. The range of emotions is broad. I’ve been through them all, and have many coping mechanisms I use. One of them is my internal dialogue. It can be my friend or my enemy. I have a wide variety of approaches, since it really likes to challenge me. Which one I use depends on the day, and how much it’s been torturing me. Here are some examples:

The Tough Love Approach:

“Really? You can’t just work like a normal body?!?! I know you’ve done it before! You used to be halfway capable. Why can’t you just do what I need you to do instead of being so difficult?? I know you know how.”

The Nice Approach:

“I know it’s hard. We’ve had a rough week and it feels like nothing wants us to survive, but you can do this. Just put one foot in front of the other. Come on.”

The Bargaining Approach:

“Come on, just get up, go to the shower, and get it over with. Then, you can relax for a few minutes. Just manage this one little thing and I’ll give you a break.”

The Bitter Approach:

“Really? Can’t just take a shower? You used to be able to work TWO jobs, AND go to school, while still managing a social life, and now- not even a little shower? What has become of you?”

The Empowering Approach:

“You got this! You’ve been through worse. You CAN take that shower. Just stand up and push yourself forward! You fight pain every day, woman. This is nothing compared to the surgeries and other stuff you’ve been through. Handle it!! Get in that shower!”

The I’ve-Given-Up Approach:

“You’re pathetic. It’s JUST a shower. You can’t even wash yourself. How hard is that? You’re really trying to be worthless aren’t you? Not sure why I bother trying anymore, but go get in the shower even though you’re lame and weak now.”

I go through all of these negotiations, and more, pretty much on a daily basis. That last one isn’t really something that’s in my control. That voice pops up when I’ve done everything else I can to motivate myself, and am still feeling like I’ve failed. It’s frustrating and emotional, so yeah, all those different scenarios go on in my head. I do my best to stay positive, but realistically, no one can be positive all the time. Many of those that we interact with every day can forget that having chronic illnesses means facing many challenges. We battle with our bodies while trying to keep up appearances for everyone else that we’re coping well, when we aren’t.

It’s uncomfortable for them to realize that we spend a fair amount of time trying to decide whether being alive is worth it, so we try to hide it. We hide our tears of pain, desperation, anger, & frustration to make everyone else be okay. There is a constant inner dialogue going on in my head. It usually consists of me trying to talk my body into functioning halfway normally, or trying to convince myself that I am not worthless, despite how I feel. Sometimes, it’s me convincing myself someone deserves my patience and understanding. It’s a constant roller coaster of emotions.

 

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A typical day can go something like this:

Upon waking up at 3 am in ridiculous pain for seemingly no reason:

ME: (eyes snapping open as pain shoots through my body) “OW. Oh yeah? It’s like that, today, huh?”
BODY: “Sure is. Good luck with that.”
ME: “So you just HAVE to act like someone is stabbing my hips with a huge knife? Is that necessary at 3am when I’m just LAYING DOWN? You can’t be happy just resting?”
BODY: “Just wait til you sit up and really feel it. Gonna be a fun one. Muahahaha”
ME: “Great. Thanks. Appreciate that.”

20 Minutes Later

BODY: “So now that you’re fully awake……”
ME: “Oh. The room is going to start spinning now. Fabulous.”
BODY: “……….”
ME: “Nothing? No snarky comebacks?”
BODY: “Wait for it.”
ME: “Ah, I see. Hot flashes and severe nausea. Are you done yet?”
BODY: “Not quite. Haven’t you learned yet that I’m never done? Hang out like that for awhile.”
ME: “I was kinda hoping we could just get it over with quickly so I can move on with my day.”
BODY: “Pffft. Nope. What would be the fun in that?”
ME: “Well, it’d definitely be more fun for ME to get it over quickly. I’d like to feel halfway normal instead of being tortured.”
BODY: “Well……..”
ME: “……….”

45 Minutes Later

BODY: “Hey. ‘Sup?”
ME: “Oh? Are we changing now? About time.”
BODY: “How cute. You think you’re about to like this change. Hahahahahaha.”

After at least 30 minutes of nonstop, uncontrollable shaking while laying underneath four heavy blankets:

BODY: “Enjoying yourself?”
ME: “Go away.”
BODY: “Hahahahaha. Here, I’ll stop. For now. Enjoy the aftermath.”
ME: “Too weak. I’ll deal with you later.”

After passing out for about an hour or so:

ME: “Is it safe to wake up yet?”
BODY: “Maybe. Maybe not. Try it and see.”
ME: “You’re just so precious. Ya know that?”
BODY: “I know.”
ME: “So far just the normal pain. Is there gonna be a catch?”
BODY: “Dunno. We’ll see.”
ME: “Argh.”

A couple of hours later when it’s time for me to get up and be productive:

BODY: “Whoa, whoa, whoa, whoa. Just what do you think you’re doing?”
ME: “Can I not walk downstairs to the kitchen?”
BODY: “Well, no. No one told you to move yet.”
ME: “Hrmph. I have stuff I need to do.”
BODY: “Too bad.”

An hour later:

ME: “Can I move yet? Three hours of rest should be plenty enough. All I did was wake up.”
BODY: “I guess. But, don’t get too excited. We won’t be doing much at all today.”
ME: “Oh well, thank you so much for your graciousness.”
BODY: “You wanna do absolutely nothing at all today? Keep it up.”
ME: “…….”

After making it to the kitchen and managing to do about half the dishes:

BODY:STOP!! That’s enough of that. Are you trying to kill me?!?”
ME: “Dude. I did like, a sink full of dishes. That is not trying to kill you. That is basically nothing.”
BODY: “Yes it is. I refuse to cooperate any longer. I’m breaking the next dish you touch. You know I’ll do it.”
ME: “Fine. Spaz.”
BODY: “Shutup. I’m tired.”
ME: “Baby.”
BODY: “Just go lay down.”
ME: “Well, it’d help if you’d make getting up the stairs easier.”
BODY: “Ha! You want the world! Get over it! Crawl if you have to.”
ME: “Grrr.”

After making it back upstairs to lay down:

BODY: “I don’t wanna lay on that side.”
ME: “Could’ve just said that instead of sending piercing pain through my left side.”
BODY: “Nope. Funner this way.”
ME: *Eye roll*

20 minutes later:

BODY: “I don’t want to lay down anymore.”
ME: “So? Are you gonna let me sit up without getting sick?”
BODY: “Now, you know I can’t be doin’ all that. I have a reputation.”
ME: “A reputation with who exactly? You live in my head.”
BODY: “So?”
ME: “What happened to you? You used to be only moderately difficult. Have you gotten so bitter in your old age?”
BODY: “Yes, I’m bitter. Very bitter. Now pay for it.”
ME: “Great.”

About an hour later:

BODY: “I’ve left you alone too long! Here’s a little extra love.”
ME: “No thanks. I’m fine being neglected. No need for—- AAAAAAA!! Really?!? You want to move a kidney stone RIGHT NOW? Out of nowhere??”
BODY: “I was bored and you looked like you were too peaceful.”
ME: “Oh, you thought I didn’t need any rest since you let me sleep soooo long last night?”
BODY: “Nah, you can handle it. I have faith in you.”
ME: “I don’t like you.”
BODY: “Love you” *huge smile*

Four hours later (been fighting the kidney stone the whole time):

ME: “Hey- what’s up with this pain? It’s out of control.”
BODY: “Well, the stone got a bit stuck. All that scar tissue, ya know. You’re gonna have to do something about that.”
ME: “Are you kidding me? You started this, how about you just handle it?”
BODY: “I have better things to do.”
ME: “I hate you.”

Two hours later (after much water drinking & movement):

ME: “Finally.”
BODY: “Oh, did you finally get it taken care of?”
ME: “Yeah. No thanks to you.”
BODY: “Well, I don’t know about you, but I’m getting pretty tired. Think it’s time to go to bed.”
ME: “Um, no. It’s only 6:00pm and you’ve given me a hard time all day. No way am I going to bed now. I need some time to recover and wind down.”
BODY: “Sleep.”
ME: “No.”

This goes on back and forth up until I finally give in and go to bed, after fighting to keep my eyes open the whole time. Then, we usually start the whole thing over again with a variety of medical issues and symptoms. I generally picture the part of my body being portrayed by a sarcastic type that has nothing better to do all day than harass me. I know it sounds kind of crazy, but hey, we all have our coping mechanisms. What it comes down to is a constant battle of varying degrees.

Some days are worse than others, but there aren’t really any days that are what someone who is used to being healthy would call “good.” Most days go like the above descriptions, or I spend the day arguing internally with myself about whether I’m going slip into bitterness and depression. I go into that a little more in this series. This is just the first installment. These are actual conversations I have in my head. I decided to start putting them down on paper because I know others battle with their inner dialogues, too, in many different ways. You can find the part 2 on my personal blog (writtenbydida.com), Click here to read ” Negotiations with my body Part 2: A letter to my body”

 

Related: Ways to offer help to someone with chronic illness/Fibromyalgia

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