When You Wake Me Up

RIP sleep

(I suggest putting on Ed’s song, that I have so kindly placed on the right side of your screen if you scroll down up a bit, before starting to read. I was listening to it while I wrote this.)

It’s really early in the morning. I’m in a kind of dreamy state, and all I keep thinking is: I want a man to love me. It’s funny, and I’m smiling, because that is so random. It doesn’t have much to do with my life at the moment. I’m sixteen, I’ve never been asked out, never been liked by a guy (as far as I’m aware), and that’s fine. I’m okay with being single. I have my entire life to know what it feels like to be in love.

This might all be because I listened to some very sweet love songs last night, right before I went to bed. Ed Sheeran has a few new songs out, and one of them is called “New York”. It is so sweet, and loving, and I want a man to call me darling like that, and tell me he will be there for me at the end of the night in the back of the taxicab. Come to think of it, I want a man who can sing Ed’s songs to me.

It’s five in the morning, which may be contributing to the fact that I seem to have no inhibitions right now. I don’t think I would have the guts to write the previous paragraph if I were fully awake and the sun were up. Good to know: never make important decisions at this hour.

I have to have certain tests done today, and you need to be awake for three hours before they’re done. And fasting. I don’t know which I hate more. Basically, my alarm was set for 4:45, and apparently knowing you’re going to have to wake up that hour makes it very hard to fall asleep. Funny story, I didn’t. Fall asleep, that is. I am so tired. As soon as the tests are over and I’ve gotten some food in me, I have to rush to school because I’ll be late as it is, then have a full day until 4:30. Odds are, I will be feeling so sick after just a couple hours that I will need to come home. Not sleeping doesn’t do wonders for Fibromyalgia. Surprise.

Okay, but I don’t want to talk about Fibro anymore. I wrote about my school trip that I mentioned in my previous post, but it was a disaster (the trip, not the post) and my family was having a really bad week, so in the end it didn’t come out so great because I was sobbing while I was writing it. It seems to be an occupational hazard. Basically, the trip was awful, my sisters were in a car accident, our Internet broke for a few days (starting the day of the trip and the accident- wonderful timing), and everyone just had a pretty bad week. I’m not so sure that not sleeping well, having a biology test, a literature test, having to study for a math test, and having biology classes on my day off  hold the promise of a much better week, I’m afraid.

But while we’re here, and my inhibitions are not, let me divulge more. I know I write well, and it’s my dream to write a novel (/finish one), but I don’t think I’m very good at writing fiction. Doesn’t that suck? I think it does. Right now I’m telling myself that is isn’t working because I don’t have a story to tell. You can’t force a plot, right? But I also have a hard time making characters believable, because I don’t believe them myself.  Maybe I need to meet more people.

The sun is starting to come up, and I don’t have much else to say. I want to have a really great life, with a really great man, who loves me. Oh, maybe that’s why! I just read a book called The Shoemaker’s Wife, and it’s a really beautiful love story (I cried hysterically at the end. It was ridiculous, but I couldn’t stop. My sister was trying to comfort me, and I said this and she’ll never let me forget it now: “I’ve known them their whole lives!”). Maybe that’s why I’m thinking about love. Put that together with Ed’s voice, and you get a romantic like myself dreaming whilst awake at 5 in the morning.

Ta da.

Love!

Ella

Song Quote:

It’s just reached the morning, You’re still in my arms, Now we stop driving, Down the boulevard, And I just kissed you, darling, I hope you weren’t alarmed, It’s just the start of everything you want. –New York, Ed Sheeran

P.s. Anybody get the title reference?

The Life of a Nightmare

Image

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

Ready For a Zombie Apocalypse

You heard me. I’m ready. I have a bunch of vegan and vegetarian friends, there is food hidden all around my room, and my sisters recently counted how many bathtubs and sinks we have and came to the same conclusion I have: we’re ready.

 

Which is not to say we believe in such things. We’re just ready. Better safe than sorry.

 

Okay, obviously I’m kidding. Although everything I have said is true. The friends, the food, the bathtubs- all real. I’m writing this because I only just realized that zombie apocalypses have been a sub-theme of my past few days. Probably because I have been thinking about our worst fears.

 

Are they destined to come true? Because two major ones of mine have.

 

One thing I have been afraid of ever since my sister got sick has been getting Fibromyalgia. Check that off the list people. I was diagnosed with it this summer.

 

Another has been cancer. Put half a check on the list. The growth was around before I was diagnosed with Fibro, but the results of the second biopsy came after. Half a check because it seems like now everything is fine, after the surgery to remove it.

 

My point is, if two core fears of mine have come true in the past nine months, will all of them come true? I watched a documentary portraying a woman who lived her entire life in fear that a man with a knife would break into her house, and then one day it happened. So thinking beyond the fact that I have to stop watching weird documentaries (there are awesome ones about gypsies too), maybe our fears are meant to warn us about what’s going to happen?

If that’s true, I’m in for the long haul.

 

I try not to live my life in fear of anything. When I break that personal policy, it’s to contemplate how awful it would be to lose another family member. But night after night, this idea about fears keeps haunting me: are they going to come true?

 

I’ve had enough suffering in my life, and I’m nowhere near even being an adult. I like to think that maybe I’m getting my suffering over with now, so that when I’m older, I can be more free. If not that positive outlook, then maybe there is just so much suffering planned for my life, that I was done the favor of having it spread out over my entire existence so that it never becomes too much?

 

Deep thoughts such as these are what keeps me up at night. These, and worrying that my non-existent pink piggy bank will be broken into in sleep, worrying that the sun will fall (what would happen…), worrying that I will get a stain on the rug of the family I babysit for (that rug if freakin’ pristine), and worrying that my apple might get depressed. I’m versatile.

I’m going to end this late night rant with one thought- if fears aren’t meant to be foreshadowing our futures, do they do us more bad than good?

Dream happy dreams,

Ella

 

P.s. Starting to see the source of the ‘tired’ in my name?

Song quote:

But it’s harder than you think telling dreams from one another. – Daniel In The Den, Bastille

thinking by Luis Alves

What don’t you understand?

Fibromyalgia is an invisible illness, meaning people don’t understand. At least that’s my definition for it. You look great- thanks. You did well on your test- thanks. You’re feeling better, right? – no.

When I close my eyes, sometimes I can pretend that I’m completely okay. It’s nice. 

 

But my eyes are usually open. You see, I understand that people look at me and see a normal girl. They see my test scores (which I work my butt off for) and see a normal girl. They watch me talk to teachers and other students, and see (you guessed it) a normal girl. This wouldn’t be a problem, because most girls want to be/seem normal. But I’m not. I will always have to sit out on many a joyful occasion because my health issues seem to prohibit fun. I will always have to plan out my days in advance, because dare I push myself one tiny step too far, I will have to pay for it with intense pain and exhaustion. I will always have to be the one who can’t participate, the one who can’t help, the one who’s sick.

 

You see, to me, all of those things have become so obvious. Of course, that’s how it is when you have Fibromyalgia. But it’s an invisible illness, and people don’t see it. And what they don’t see, they don’t understand.

 

In some ways, it’s nice that people don’t know the moment they meet me that I’m sick. I get to escape, or maybe avoid the subject when I meet someone new. But in many ways, it really sucks. It makes it all the more awkward to have to explain.

 

For instance….

I’m talking to a bunch of people, and they realize there’s a trampoline nearby. Let’s go jump, they say! Off everyone rushes, towards the fun galore of jumping. I sit down on a chair. Someone asks me why I’m not joining, and I, innocently assuming time and time again that I can just explain, tell them that I have some health issues, Fibromyalgia to be exact, and jumping just doesn’t do it for me anymore.

 

Then the whole scene ensues, of them pretending to care and understand, asking me to explain what it is, what it means, how I’m managing. I come out of every scene, back to my wardrobe change, feeling like maybe this time someone really did understand. But there’s always that twinge.

 

That night, I have a nightmare that involves trampolines. A week later, I see that person, the one who cared and understood, and they don’t remember who I am. I tell them, we talked when everyone was on the trampoline. They now recognize me. They ask me, so how’s that thing you have? It was the flu, right? So I just give up, and say that yes, indeed, it was the flu. They tell me they are glad to see I’m feeling better. I thank them. And the twinge turns to full blown feelings of… feelings of…. I’m not sure I can describe them. But they suck.

 

What don’t you understand, people? Health issues = physical implications = emotional and mental implications = difficulty leading a regular life = it would nice to have someone care.

 

But you know what? Maybe it’s not even that. There are some people in my life, that I know care about me. Maybe they just don’t know how to show it. And I know I get angry sometimes, when people do the wrong thing. But how can I not? And I’m trying, really trying, to keep those angry spouts in check. But when a specific few things are said to me, I have a really hard time with that. These are those few:

 

1. If only you pray harder…

My response: Prayers can’t fix everything. I’m working hard to fix this, and I have to put some faith in that as well.

2. Oh my god, you’re so lucky!! You get to stay in bed and don’t have to go to gym!

My response: Wanna trade?

3. But you just look so good!!

My response: Thanks! But, um… I still feel exactly the same.

4. It’s all in your head.

My response: I have something I can put in your head. Like this axe, perhaps.

5. Your illness is just caused by stress.

My response: Stop being an imbecile and do your research! No it’s not!

Okay, so maybe these are a little extreme.

Maybe this entire post is a little extreme. I understand why people don’t understand: it’s an invisible illness. I get it. I know that people are trying to show me they care. I know that people don’t know what to say, and are just trying to make me happy. I know.

 

I just wish, that sometimes, they’ll also get it right. I dream about it all the time. About someone coming, who just really understands me, and what I’m going through. I know that that someone doesn’t exist. I know that every person in this world feels misunderstood, and that no one will ever know what it’s like to be me, because I’m the only one that is.

 

But a girl can dream, right?

 

And that’s what the next post will be about.

Stay tuned.

Be kind to one another, and take more notice of what people around you are going through. Then remember what they tell you. You don’t know what a difference it could make.

 

Yours truly,

Ella

 

Feel free to comment below, and ask any questions you have. I may have come off a little strong today, but I assure you, I don’t bite (or swing axes).

 

Song quote: “If you close your eyes, does it almost feel like nothing’s changed at all?” -Pompeii, Bastille