The Life of a Nightmare

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Birds sing. It wakes me up, and that’s how my day begins.  I go to school, where I’m liked enough by my peers to not be picked on. My teachers generally think well of me, which is a good thing. I have clothing on my back, clothing that I like, and I’m not ugly.

I work hard at school, and I see the results. I have a couple of friends who care about me. I live close enough to school that I can walk home, and I listen to music, which always makes me happy.

Once home, I have relative freedom. My parents love me. I have two sisters. I have my own computer, and my own room. I have space to do my homework. I can have friends over if I’d like. I live in a fairly safe town (in a not so safe country). I don’t have to be afraid to step out of my door.

Truly, if I look at myself from afar, I can see why people think my life must be great. I have what others covet. Supposedly.  Other people might think of my life as a dream. I appreciate what I have, I’m aware of how wonderful it is to have these things.

But I’m living a nightmare. An invisible nightmare, to those who aren’t me.

When the birds sing, it hurts my head. When I wake up, I awake to pain.  When I go to school, I’m faced with the horrible truth: I’m no kid anymore. I’m light-years older than everyone else, because I have to be.

Everything that sounds good on that list, is awful is you’re feeling constant pain. I can’t think, can’t breathe, can’t exist, without something about my body being wrong. Our bodies were designed to work. Not to spread pain. With one pain, comes another, and my body tries to adjust. But it can’t. Because pain is a domino, and my body can’t let its guard down.

And people think they should covet what I have. I want to throw a tantrum, kick my legs, punch teddy bears and scream at the world: why was I given this? I want to grab the world by its neck, shake it, and make it realize something: just because something looks great, doesn’t mean it is. But more importantly: just because someone looks okay, it doesn’t mean that they are.

To you, something may look like a dream. But more likely, it’s a nightmare.

I can’t sleep at night,

Ella

Song Quote:

Look into my eyes, it’s where my demons hide. -Demons, Imagine Dragons

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9 comments on “The Life of a Nightmare

  1. smile breathe and go slowly says:

    ” just because someone looks okay, it doesn’t mean that they are.” so true. I learn this every day with a bf who can be in agony and not look it. He, like you, has learned to cope and his scale of pain is very different from mine, lets say. Your writing is light, yet serious. Fun and sombre all at once. Glad to have found your blog. :)

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  2. Ty McDuffie says:

    I wish I had some words that could help ease this for you….but I’m not that eloquent…All I can do is offer you a new friendship. I look forward to talking to you one day.

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  3. Amazing how much we have in common. Like you, I wake to pain every day and mostly plan my day around how I feel. Agreed we all have our own form of suffering, the difference is in the details. I tend to share mine because I think sharing can help us relate to each other; the trick is to listen to the other person’s concerns, too. However, over sharing just turns people off – which is why a blog is so helpful.

    You’re the first fibro patient I’ve met that’s your age (I’m guessing you’re in your late teens?). Most fibros I know are middle aged women. Best of luck to you –
    Caryn

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  4. rionm2013 says:

    The one thing anyone who writers should do is be honest and show their heart. You do both in this blog, I don’t want to say something to you that you have probably had a million times from your loved ones, and it wouldn’t sound any better coming from a complete stranger, so all I can say is this.

    You have opened my eyes, to your pain and what it must be like for you. In a way only words can sometimes.

    Keep up the blogging.

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  5. auntieyol says:

    Think of this. That many people you see walking on the streets that look normal because they dont have any physical disadvantage have something bugging them. Everyone has. Maybe they are suffering an abusive parent or spouse, an a.h. boss, an impending death in the family, discrimination because of age, gender, race, political views, sexual orientation, financial status… They may be pissed off and angry all the time because they are too ugly, too fat, too thin, just because someone put that thought in their minds when they were little. Life is full of pain for everyone.q Each pain is different. Few people find joy in everyday life all the time. My thoughts. I also have my pains which I try to endure and then, there are so many beautiful moments in life. I pray your life will improve with technology. There must be a cure soon. Envision it. Many I am sure, are praying for you.

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  6. Scream, by all means, but don’t punch the teddy bears! They don’t deserve it!
    In all seriousness, chronic invisible illness is a giant pile of rubbish, and it’s hard for people to understand. The best analogy I’ve found is the spoon theory http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
    People don’t understand how fast you have to grow up when you’ve got a chronic condition which affects the way you live your life, but you’re not alone. There are thousands (probably more like millions) of us on the internet and we’re all here to support one another.

    The one good thing I’ve found about having a chronic illness is that it gives a wonderful sense of perspective. I am much more patient now I know I’m sick than I ever was before my diagnosis. My body can only do so much, and when it’s too much I’ll sit, rest and relax. Sometimes I’ll scream and cry, and then I’ll sit and relax. And sometimes chocolate helps. :)

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  7. risinghawk says:

    Yes, the “invisible disease.” Fibro/PTSD . . . usually looks perfectly fine from the outside. And, if you’re like me, you can do a superb job of hiding it, too. I reached a point where I just said to myself, “Why piss on someone else’s life? They can’t understand it, and they can’t fix it, so all I’ll be doing is making them feel bad if I bring it up.” So, I suffer in, (mostly), silence, often wanting to “throw a tantrum, kick my legs, punch teddy bears and scream at the world,” as you brilliantly expressed. For what it is worth, I know where you’re coming from. I wish I had a cure for it but, alas, all I can do is offer my support, such as it is. Namaste . . .

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