I’m whining. Choke on it.

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“Who’s gunna come around when you break?”

This weekend has been really relaxing, minus my short-lived bad mood on Friday.  I’m definitely paying for it this evening though.  I’m curled up in my big blanket trying to convince my body that I’m not actually on fire, just going through Prednisone withdrawl.  I forgot to take my morning dose today and after being outside all weekend, my body is revolting.

My body is a cage.

Some times, especially at the end of the day, I feel trapped in this body of mine.  Like it’s keeping me from doing what I want to do. What I need to do.  Granted my I’m more digestive sick in the mornings, but lately, I’ve been feeling more pain at night.  I feel like I’m on fire.

Each keystroke is sending pain up through my upper arms.  Fracturing my wrists and those broken knuckles aint got shit on this…

I tried to stretch out my muscles in my back earlier and felt like someone was getting mighty creative with hot pokers.  Forget raising my arms above my head, my head is basically stationary at the moment, my neck is so stiff and my shoulders so bunched.

Surprisingly I’m not in a horrible mood because of it, I’m just.. hurting.  I get tired of pain some days, it’s hard not to wonder if this is what I have to look forward to in the future.

Chronic Illness.  Such a rip off.  I didn’t even get a cool one, I would’ve totally dug that tree disease, you know, where you look like you have bark for skin.  Or even better yet… dude, how cool would it have been to have a siamese twin.  Okay.  Not so much.  My bad, and with my luck one of my followers has one growing out of his head.  Just watch.

One thing that ways on my mind is, who would want to deal with this in a significant other?  My ex-husband was extremely resentful, and in all due reality, I can’t say that I wouldn’t be if my love had a long-term life-long dirty-whore of an illness.  I often think : Jeez, this shit sucks now, and I’m only 25, what’s the rest of my life going to look like?  Who wants to stand by that?

I don’t know, after seeing my ex-husbands reactions to it, I’m wary.

—-

So I’m hiding behind my music tonight, huddled up in my kitchen.  Dog on lap.  Feeling pretty damn old.

“Go to bed, everything’s alright.  Don’t know the whole world is changing as you sleep through the night.”

—-

Have you ever felt your eyes so heavy, so.. almost swollen, like you’re exhausted, or you’ve been crying, but.. you haven’t?  I feel like I’m wearing a mask, a clay mask, the swelling is getting worse.  Welcome to moon face.  Thank-fuck-you-very-much steroids.  This is more aggravating than my rings not fitting anymore.

This body that is riddled with these side-effects, it’s not mine.  It’s not.  It doesn’t behave in the way that mine does.  Why is my hair thinning?  Water weight?  Oh and my uterus has decided to not work anymore, but that one I’m okay with.  This body is not mine though, I want my old one back.  The one that didn’t have an over-active immune system.  Hell, even post that.  The one with out arthritis and sunken eyes.  The one that didn’t bruise after a brisk hug or being tickled on the rib cage.

(I’m sitting here listening to a violin wail.  This is what I imagine the end of the world sounds like.  Sorrowful yet angry underneath it all.)

How is it that I got stuck here?  I feel like I got switched into someone else’s body. At least in the last one I could close both of my hands at the end of the day.

I can’t wait until I can get off of these steroids, but at the same time I’m scared about the next round of drugs.  My blood work is apparently still pending, I should get a call tomorrow to get the go-ahead to pick up the script, but I’m scared.

The next one isn’t much better, just less… vain side effects.  I guess.  Only a couple more months of prednisone though if this drug comes through.

—-

I know I’m stronger than all of this, and I will get through this.  I know I’ll go into remission.  I’m way too stubborn, but this is my admission blog, my confessional.  Sometimes, I just get tired.  I get tired of this.  Tomorrow is another day, but tonight?  I’m tired.

I can’t wait until remission.  Until my life returns to normal and I can pretend to forget how bad this disease can get when it’s “active”.

I can’t wait until this goes away:  Prednisone withdrawl – the first symptom I get, with in 18 hours of missing a dose.. any touch on any part of my body hurts, like it’s bruised.  I itched my cheekbone and it feels like I just punched myself in the face.  Totally gay.  On the lighter side I’m pretty sure the look on my face was priceless.

—-

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2 thoughts on “I’m whining. Choke on it.

  1. Amanda

    For what it’s worth, your whining makes me feel less alone. I completely relate to feeling like you’ve been stuck in a body you can’t control that isn’t your own. And I know what you feel with the tight pred face…it does hurt!

  2. Hi Skeletoes,

    This is a very real and touching post. As you know, I don’t have crohn’s but I do have celiac disease and my back has taken more from me and changed me even more than I thought it could. When you talk about your body being your prison, I am unashamed to say I cried. My body is my prison. I think one of the worse parts about our individual conditions is that no one can see we are sick. People can’t see into your digestive track, nor do they know the kind of pain you describe. Other than your reaction to it, your pain is invisible to everyone but you. Kinda like my back. No one can see how much pain I am in, no one can see how much this prolonged pain has effected me. When I look in the mirror, I don’t recognize the woman that stares back. I have gained 25 lbs, I am angry and on the verge of tears all the time and the worst part is that I can’t make myself care. I have fallen in the dark hole and now need help climbing out. I am going to see a psych now and although I am not too sure how I feel about it, I think that he can help me. Since about eight months ago I have had some crazy anxiety and panic attacks to boot. Now I am sleepwalking from the sedatives they gave me. My body wakes up because of the pain but my brain doesn’t. So I have come to with a milk pitcher in my hand and I was pouring it into nothing other than my hand shaped like I am holding a glass. Another time I hit my forehead on my counter because I guess I was standing in front of it still asleep and my body gave out, like I fell to sleep standing up! So my body slumped and my head hit the counter and I woke up. The most common thing I do when sleepwalking is me going into the kitchen and taking a glass out of the cupboard and leaving it empty in the fridge. I don’t know why I am doing it, but it is pretty funny when someone other than me opens the fridge, finds it and has no idea what’s going on

    Okay one last thing, I didn’t mean to write you a novel, I swear!
    [i]One thing that ways on my mind is, who would want to deal with this in a significant other? My ex-husband was extremely resentful, and in all due reality, I can’t say that I wouldn’t be if my love had a long-term life-long dirty-whore of an illness. I often think : Jeez, this shit sucks now, and I’m only 25, what’s the rest of my life going to look like? Who wants to stand by that?

    I don’t know, after seeing my ex-husbands reactions to it, I’m wary.[/i]

    You ask questions that have been haunting me for a long time. When I hurt my back I gave my bf a way out. I said I would understand if he doesn’t want to take on my recovery and he said he wanted to be there for me. Yet… He has been the most un-supportive person. That resentment has flourished on both our parts, him because I am useless, cranky and in pain all the time, and me because he isn’t supporting me but acts like he is doing so much. He doesn’t have a job and I have been supporting him for two years, (One of which he completed his MA in and I don’t begrudge him that year, it has been the last year that my resentment has increased because he didn’t get a steady job when he got out of his MA and a year later he still doesn’t have one. I understand the resentment he has for my injury, we have had to give up a lot our dreams and plans. Our life was put on hold but I still don’t think it is fair that he resents me this much. I push myself hard to be better, but in reality I am just not. He makes me feel guilty about wanting to sleep during the day, but really my body needs to sleep as much as possible as that is when a brain chemical that helps heal your body and as I went to my surgeon last week and he told me that my fusion isn’t solidifying as quickly as he would like, so I have another six months to wait to go back to work if everything is ok at my next appointment in four months.
    I find it so scary that if my fusion doesn’t start soliddifying faster I may have to get surgery again. Boo!

    Anyways, I really just wanted to tell you that I understand. Our situations are different but we have many of the same feelings in common.
    BTW You aren’t whining. You are discussing the hell that surrounds your diagnosis. Never apologize for saying how you think or feel as long as words are never said in malice or ill-intent against someone else, I don’t see the problem with getting it all out. You force no one to read your blog so if they don’t like what they read, well… don’t read it then. Are the people to whom you are telling to choke on your complaints they book critics that might get your some good press? OR editors looking for a piece from you?? OR whatever, you do see my point I hope? Unless the criticizer has some specialized and recognized authority I would take what they say with a grain of salt! (I can’t even tell you the number of times I have been asked if I have tried Robaxiset [a mild muscle relaxant with tylenol] It is always someone who doesn’t really care too, but seriously I am taking 260mg of morphine a day and you think that 325mg of tylenol and even less muscle relaxant than tylenol. The short answer was yes,m but it is almost offensive. I have had major back surgery and it is so played down when someone asks if I need an otc med… Otc’s aren’t strong enough for someone that has been taking meds for 18 months. Oh, the best is “I have back problems too, and I just take robaxecet and am fine. You should try it, It will work for you too.” How do I explain that I don’t have a ‘sore back’ I have titanium in my spine!!
    Anyways, enough. Sorry for the essay, I just feel like I can relate to everything in this post!!
    You’ll be on my mind today, hopefully this morning is better for you and by night time you feel better. Lots of loving thoughts coming your way!
    xoxoxo – S.

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