A Letter to My Enemy

Dear Fibromyalgia,

I’d like to talk doogree with you.

           Doogree- straightforwardly, with no beating around the bush

I am no longer naïve enough to believe that despite your presence I can make my life the way I’d like it to be. I am old enough now to realize that I can never make peace with you. I will never be my truest self until I am rid of you.

Did you hear that? I will not be free until I am free of you.

You are constricting me. You are suffocating me. You are the enemy I fear, the pain I dread, and the negative I cannot escape. You. Suck.

My friends wonder how I do it, how I live with you in my life. I wonder why.

I just want to make sure you are not mistaken on this: we are not friends. It has been years and I tolerate you, but that does not mean I do not hate you with every fiber of my being.

See what I did there?

There is not much more to say.

The next time I write to you, I hope it will be a goodbye.

Ella

Song Quote:

Light up, light up, as if you have a choice. –Run, Snow Patrol

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Honesty

The stark difference between outside and inside doesn’t pass my notice. On the outside, I am calm, silent and still. Inside, there is so much movement it makes me sick. Or is the sick the cause of the movement? My heart is all aflutter; it feels as though everything within me is jumping, shivering, quaking.

They call my name. I walk in. I am only thoughts and yet I have no thoughts. We sit. The two men are seated before us. They tell me to talk. I’m surprised to find words leaving my mouth. I barely remember what I said.

Then one of the men starts talking, and I hate the things he says. Implying I have complete control over my body, and I could be better if I wanted to be. Implying I don’t get out of bed. Implying I’m making things sound worse than they are. The other man tells him to leave me alone. He doesn’t. And one thing he said shines in bright letters across the reel of my mind: “maybe if she just tries she’ll be better”. Maybe if he just tries he’ll be less stupid.

I want to run away. But heaven knows I can’t run. All I know I can do is cry, but I don’t. Then we’re getting up, and we’re walking out of the room, and the other kids my age look up at my face. I know they are there for the same reason I am, and they both look good. Like me. Put together. Dressed well. But wrong inside. A part of me wants to smile at them, encourage them, but I can’t seem to control the muscles of my face. Oh, I remember. It’s because I’m holding them tight so I don’t sob. Good thing I remembered.

I am sweating. I can feel myself shaking, but I don’t know if that is only inside. I still want to cry. I want to go home. I don’t want to stand in line. I don’t want to repeat the verdict five times to unsympathetic people. Isn’t the verdict good though? Isn’t it what I wanted to hear? The outcome was the best it could have been, I suppose. I know this makes no sense to anyone but me. I apologize.

But I hold it together, and I make it home. Composure. I am a master at it. I go about the rest of my day, but now it is night, and it all decomposes. I can’t hold it together anymore. The composure, I mean. Not the rest. The rest I hold together whether I like it or not, because there is no other alternative for me. But the composure – yes, that is gone. Officially. Like my documents are today.

I would wish you a good whatever, but I am pretty sure that is not what it is.

Ella

 

Song Quote:

I’m sorry for the honesty, but I had to get this off my chest. –The Man, Ed Sheeran

AUTHOR”S NOTE:

I really am sorry for the kind of depressing post today. I wrote this the other day after a not so fun experience, and as I always try to be honest with you and share how I truly feel about things I decided to put this up. There are moments when I feel like I can handle anything, and moments when I don’t. Sometimes everything just becomes a bit much for me to handle. The good news is, when I feel like that I write it down and then I feel a little better.

Totally unrelated, but… Time is almost up! You need to send in your competition entries today! You can find all of the information about the competition and how to enter right here: http://smurl.ws/0zi1tm  It’s still anyone’s game! 

This

I have words with which to describe beauty. I have words with which to chronicle elation, and words that express pain. I have many words with which to describe frustration, happiness, fatigue, excitement or nervousness.

Why don’t I have words for this?

I’ve gotten better at hiding my feelings lately. If I’m fed up with myself for being in this mood for so long, other people must be fed up with it too. I don’t want anyone to get fed up with me. It’s just this combination of feeling so sick, and having already used up my store of emotional strength and inspiration. There are days when I just don’t want to get out of bed anymore. What’s the point, really? If I know that I’m going to be suffering all day? I’m just a hollow statue of a human, running on empty.

See, I have words to describe that. But it’s not this. I don’t even know what this is. I don’t even make any sense any more. Where are my words? Why are they hiding? They’re in my head, I know they are, I can feel them. I think that maybe they’re going underground because they know that if I express this out loud, I can never take it back again. If I let my soul, my heart, my mind, whatever, figure out the words and write them down, they’ll never forget them. The thing with feelings is that they change, and you forget exactly what they feel like. We remember feelings as words. We allocate this feeling to anger, that one to exhilaration and another to sorrow. The words are what we visit later on, not the feelings themselves. At least most of the time.

Now that I think about it, I understand why I can’t word this. My body is protecting itself, for once. Maybe it’s better this way. Maybe, when it passes, I’ll be able to move on and forget that I ever felt as lousy as this. Wouldn’t that be nice?

I just wish it would pass already, because I’m so tired of feeling this way. I feel like a broken record, because I keep writing again and again about being fed up with being sick. I also feel like a broken record because I just feel kind of broken. But what can I do? I can’t will myself into health, I’ve tried that before. I keep up whatever I’m told to do, as much as it sucks. Yet I still feel this way, and it’s still what comes pouring out when I sit down with a crisp white piece of paper and a black pen (hands up all of you that didn’t think about me writing on actual paper before posting).

There have been a few escapes. When I’m with my friends I’m less aware of the pain, and I was with my friends all weekend. When I’m watching TV I’m fairly distracted. When something around me is pretty. And… no, that’s about it. Often it just feels like I’m going to explode.

I’m lost for words again.

Yours truly,

Ella

 

Song Quote:

Life goes on the same, you bury the pain… heal the song, sing along, but what does it change? Oh this life is s confusing, feels like I am always losing… Words are found too close to the edge, that we don’t dare sing. –Somewhere Else, Travis

 

I pass this on my way home from school, and I get to escape for a little while

 

P.s. Sorry for being absent for a while. This has clearly been getting in the way. I was thinking of adding another page- any idea what it should be? Let me know in the comments or contact me.

I Am Strong

I’m done. I am done with being sick. I don’t care if my body agrees with me or not. I am ready to be healthy again. My fears will all go away. My worries will come to naught. My strength will come to light.

It’s time to get my life back. No, that’s wrong: it’s not time to get my life back, it’s time to get my life. A life in which I am able to achieve what I set my mind to, a life in which I am no longer held back by things that are not in my control, a life in which I am free.

Freedom is a simple word with a simple concept. The definition of freedom is:

1. The power or right to determine action (think, speak, act) as one wants without hindrance or restraint

2. Exemption from external control, interference, regulation etc.

3. The quality or state of being free

But the truth is, that freedom means something completely different for each and every one of us. There are the technical definitions of the word, and then there are the definitions we hear about in songs, read about in books, hear about from the people we look up to and figure out for ourselves.

I’ve been waiting for freedom for a long time. I haven’t been sitting around waiting for a phone call to tell me I’m free. I’ve been working hard. I don’t think that sheer will power is going to make my Fibro go away. If that were true, it would have happened already. I’m not sure I believe that the current treatment plan will help me. I don’t know if this will ever go away.

But I do believe that I am strong. Until now, I was hoping that my strength would help me through. Well, I’m done with that. Now, today, I know that my strength will help me through. I don’t know when, and I don’t know how, but I am strong and it will happen. I don’t care that this week was bad, that I was clearly not better this week. I don’t care that I don’t get to eat comfort food. I don’t care that I have to force myself to exercise even when my body is screaming with pain, trying to shut down because it doesn’t agree with me that I should be moving.

I care about the fact that I don’t get to participate in things with my friends. I care about the people who have been with me all this time. I care about getting better. It’s time.

Are you with me?

Yours truly,

Ella

 

Song Quote:

If the clouds don’t clear, then we’ll rise above it, we’ll rise above it. –Before the Worst, The Script

 

 

Quotes about freedom that I used in a speech I wrote last year:

Freedom is not worth having at all if it does not include the freedom to make mistakes. -Mahatma Gandhi

The most courageous act is still to think for yourself. Aloud.  -Coco Chanel

I disapprove of what you say, but I will defend to the death your right to say it. -S.G, Tellntyre

You wanna fly, you have to give up the sh*t that weighs you down. -Toni Morrison, Song of Solomon

It was, he thought, the difference between being dragged into the arena to face a battle to the death and walking into the arena with your head held high. Some people, perhaps, would say that there was little to choose between the two ways, but Dumbledore knew — and so do I, thought Harry, with a fierce rush of pride, and so did my parents — that there was all the difference in the world.  – JK Rowling

Sharing Is Caring

That’s what I have been taught my whole life. It was the mantra repeated throughout my childhood, and is the nostalgic phrase thrown out in my present. I wholly believe in it.

I’ve had a sharing kind of day. My dad lent me his sweater, I brought some food from home for my friend, another friend shared some of hers with me, I shared my scarf and hat with others who were cold throughout the day, I received yarn as a gift from a friend for whom I knit a hat, and I got a ride home from someone because it was raining. It was all really great, and it got me thinking.

So, sharing is caring, right? We’ve established that. If so, why can’t I share my pain? Why am I the only one of my friends who’s suffering every minute of every day? Why am I the only one who has to worry about her health and her treatments all the time? Why am I the only one who isn’t healthy enough to participate in things?

It’s not that I want my friends to feel like this. I wouldn’t wish Fibromyalgia on anyone, ever. It’s just that I’m frustrated with feeling so alone in it. I can talk about it with my friends, especially a couple of them who are really there for me with this stuff. My class knows what I have (after a really messed up year of it staying a rumor despite the fact that I told everyone what it was). I talk to my parents; they know exactly what I’m going through. All of that is great, and not to be underrated.

But no one feels what I feel. No one knows what it’s like to have this pain, to feel so sick all the time. Anyone who doesn’t feel what I feel the way I feel it would have no way of ever understanding what it’s really like. And that makes me all alone. People care about me, but I can’t share this. I’m the one who wakes up and goes to sleep this way. I’m the one who sits in class with pain travelling through her body. I’m the one who stands talking with people, but is usually actually fighting a migraine, knee pain, exhaustion and more to do so. I’m the one who’s hurting. 

There’s really no solution to all of this. Even this blog isn’t the solution. It helps a lot, don’t get me wrong: seeing positive comments and a show of appreciation for what I write makes my day a lot of times. But it doesn’t take away the pain. I try to keep up with normal life, with the things people my age are doing (by the way, the driving license picture ended up coming out great!). But at the same time, I’m also a really old person: I can predict rain. C’mon, no one my age is supposed to be able to do that. My knees swelled up last week, while my friends were all on vacation in locations around the world, because the weather was changing. And yet I still can’t figure out when to bring my umbrella.

I’m tired of hurting, and of feeling alone. Just tired of it.

Yours truly,

Ella

Song Quote:

It’s taken me a while to tell you, exactly how I feel inside. The words, they may seem simple right now, but they took me a while to find. –Be Alright, Lucy Rose

Shining, Elegant, Weightless White

In an uninspired moment, I tried to think of something to write. My brain seemed to be tired of words. I’m scared fibro is taking over. I wrote this:

Like a thin sheet of aluminum foil,

Wrapped tightly around my forehead.

It’s thin,

But heavy, heavy, heavy.

Pain has turned it into a dark, somber, rusted gray.

 

I imagine white acrylic paint and a paintbrush.

I painstakingly paint every millimeter,

Over and over,

Until the layers are threefold thick.

It’s a shining, elegant, weightless white. 

 

I wave my magic wand,

Wingardium Leviosa,

And it floats before me,

As I observe it in all its glory.

 

When time comes to me,

I open up a stark white pouch,

Place the luminous pain within,

Open up my drawer,

Slide the pouch inside,

And bid it good bye.

 

Until I see you again.

Yours truly,

Ella

Song Quote:

Try and stay out of your head, I have seen you invent the damnedest things there. –Take a Bow, Greg Laswell

(My new ‘song of the week’ is waiting for you on the right side of your screen)

The Life of a Nightmare

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