Let It All Rain Down

Ice cream, red, melting

It looks good doesn’t it? Well you’re about to be told you can’t eat it. Then it’s going to drip, and rain down on your brand new boots, and you’re going to slip in the puddle of your own misery. I’m in a good mood.

I want to quit. I’m sick of feeling this way, like I’m doomed, because of the pile of homework that is staring at me. I want to quit advanced math and advanced biology. They’re making me miserable. I’m just barely managing to go to school every day, and they’re making it impossible for me to ever feel okay.

I don’t think I can do school. I just don’t think I can do it. I know there are harder things in life, but I don’t see how it’s possible for me to survive this. Actually, let me rephrase that: I don’t see how I can survive this while not losing my mind and my health.

Guys, I’m so tired. It’s insane. My entire body feels like it needs to stop and wheeze every time I try to move because I just have no energy. Every day I wake up and something else is hurting me, and I just have to deal with it. I don’t have a choice. I don’t get to say, “well, it’s my fault, because I should be going to bed earlier”, then change my ways and see results. I get eight or nine hours of sleep every night, and it makes no difference. My pain and fatigue are the same.

The homework, the pressure, the stress: it’s all becoming a little much for me. I have a stiff neck right now on top of it all, and I literally can’t look down, so homework has become this hill I can’t climb over. Every teacher thinks they are teaching the only subject that matters, so they happily grant us the gift of hours of work, without thinking about the fact that maybe we have other stuff to do.

I don’t want to complain about it anymore. I don’t think it would help. I just want to officially put it out there: I am sick of this. My brain is tired, my body is tired, my neck is tense and my patience is gone.

 

_______________________________

 

My school is going on a trip next week. I don’t know how I’ll manage. It’s a three day trip, so for now the plan is for me to leave with the school in the morning (5:45 am), and in the afternoon let my mom know how I’m doing: if I’m fine, she’ll come the following afternoon to pick me up, and if I’m not, she’ll come that evening. The thing is though, that I can’t do any of the hikes, so I’m just going on the bus with them (the student body), dropping them off at the trail, and then going with a bunch of teachers and the secretary to do the food shopping. Then we go pick them up, and when we get back to camp, I’m on kitchen duty (every year, 11th grade is in charge of food). So I’m basically there to be the mom.

Last year I missed the trip entirely, which pretty much sucked. I don’t want that this year, so here I am. I just hope it’s worth it. I have a feeling that ten minutes into the bus ride I’m going to feel sick to my stomach, and half an hour later my head will explode. Then I’ll go do the shopping, and I’ll hurt my neck and knees. When I get on the bus and pick everyone else up, I’ll get a horrible migraine. When I’m working in the kitchen, I’ll hurt my hands. Not to mention I’ll be having cramps all day.

But I’m not pessimistic at all.

Dammit, I just want to have a good time and feel like a normal human being! Is that too much to ask for?!

Virtual hugs are welcome,

Ella

 

Song Quote:

Let it all rain down from the blood-stained clouds, come out, come out, to the sea my love, and just drown with me. –Shallows, Daughter

P.s. Yes, I know the song quote is dramatic and depressing. It matches my mood. It is what it is.

Not This Way

RIP sleep

This isn’t how it was supposed to go. I wasn’t supposed to feel like I was seconds away from collapsing all day. I’m not supposed to feel this upset after what otherwise would have been a great day.

 

Today was my first day of junior year, and like anyone would be, I was excited, nervous, and not at all eager for it to start. But at the same time, I was worried. I chose a beautiful outfit to wear today, got my hair cut a few days ago (so now when I wear it down it’s layered and naturally wavy), and got myself just a bit pumped about a new school year. But I was worried.

 

Ten minutes in, I felt sick to my stomach and needed to run outside. Too much noise, too many people, too many limbs around me. Outside it was extremely muggy, so after realizing I was probably going to get more oxygen inside, I went back in. Playing super hero music in my head and thinking “I’m going in” helped a little bit with that tough decision.

 

See, you all pretty much know me by now, or know the way my quirky head works. You know that I am generally an optimistic person, and that in almost every post, regardless of it’s theme, I have some witty or weird sentences that lift the spirits a bit. This comes naturally, and it wouldn’t be me writing if whatever piece didn’t have those. Right now though, I don’t want them to be here, because it’s makes me sound happy or strong or brave or whatever, and I’m not! Well. I am. But I’m not. You know?

 

No.

 

I had a really hard time. I’m not going to get into everything that happened today, but I’ll share a few main events that show that the staff at my school are incredible, and that I feel really sick:

 

-My teacher had the “tech staff” turn down the volume on the microphone after it worsened my migraine.

 

-The school guidance counselor brought me a cup of water and offered to take me home when she saw how I looked (dead and sweaty).

 

-The principal picked up my backpack, carried it for me, and let me stay in his office (under the air conditioner) until I felt a little better.

 

-The school superintendent is setting up a cupboard in my main classroom so I don’t have to walk down two flights of stairs to get to the lockers.

 

So as you can see, my school has been absolutely amazing to me so far, and it’s only been a day. I’m so incredibly thankful for them, especially the guidance counselor who has been on my side since the first day three years ago, when I transferred into this school. She’s known me since before all of the medical shifts and scares.

 

At the same time, this year is extremely intense in terms of school work and schedules, and my energy is so limited that whatever leeway I’m given will only make a dent. I have a long scary year ahead of me, and I want to just go ahead and tackle it, but I don’t know if I can. I’m so sick and so tired after one frickin’ day. How am I supposed to last more than that?

 

It doesn’t help that I haven’t seen my dad in forever. Part of it as because my vacation was longer than the rest of my family’s, so I missed a week, then he went away on business. It has been two and a half weeks since I saw him, and he comes back this Friday. Usually our relationship is great, even when he’s away, but this time it’s been complicated. He’s away so often, and he misses so much of my life. I know it’s not fair to be angry at him, because it’s not like he’s having that great of a time and he’s just abandoning us. He’s working all day long, and I know that he’s probably lonely. He just… he’s away, you know? My life keeps going, and two weeks in teenager land is a major chunk of time.

 

He misses doctor’s appointments, school meetings, tests, and dinner I cooked for everyone last night. Ten minutes on the phone everyday is just not enough. He also has a knee-jerk reaction to any complaints, which is to get angry/frustrated and try to make it clear to us that the world is a mean place and we should just deal. The thing is, I’m not like some other family members: I rarely complain. I rant, but in a funny, sarcastic way. If I’m complaining, it means it’s serious and I need support. Him telling me off is not what I need. It’s not like I’m trying to have a bad day on purpose.

 

For instance, when my mom and I went to another doctor last week (a new one), he (the doctor) was a total jerk and upset me a lot. I talked with my dad on the phone right after, and I was basically sobbing into the phone. He very quickly just got frustrated and told me I should just deal and not over-react. When I talked to him the next day he told me he talked to my mom, and “it turns out” I “wasn’t exaggerating, the doctor really was a jerk”. No kidding. I told him I don’t normally complain or make a big deal out of little stuff, so if I tell him something, he should just take it as it is. It’s the truth. It doesn’t help that he always has to cut the conversation short because a meeting is starting.

 

I try to be understanding, to tell myself that he’s working really hard, that he didn’t choose to have to travel so much (except he did, basically), and that he would much rather be home with us all the time. But at the end of the day, when I’m a kid and he’s my dad, he just isn’t home. I hate it, and I’m crying, because I miss him and I don’t want to have to write this down. If I don’t though, I’ll just feel worse.

 

Starting a new school year is never supposed to be all that amazing, but it definitely wasn’t meant to be like this. I just want to feel better already. Screw all that telling myself it could be worse, and that I should love and enjoy life. Life right now sucks. I want to be better. Healthy.

 

I can’t sit here anymore, my back hurts.

On that absolutely beautiful and uplifting note,

Yours truly,

Ella

 

Song Quote:

All the dishes and the words would pile up inside, she loved the world but it didn’t love her back. -Expecting Too Much, Orla Gartland

 

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

Sick and Sick of It

I miss the old me. I miss the me who could stand for more than three minutes, slice her own food, dance for three hours straight, and who could laugh without feeling pain. I’m letting myself say this: I really miss that girl.

 

Sadly, she’s no longer with us.

 

This is the new me: I have fibromyalgia. It has been defining me without my permission.

 

Fibromyalgia has become more than just my disease; it is my way of life. No matter where I turn, it stops me. I have to take it into consideration, because if I don’t, there are consequences. It trumps everything else in my life. I once described it to my friend as “a scared infant with serious abandonment issues”. If for even one second I manage to enjoy myself and forget it’s presence, it makes sure that I know it’s still there.

 

On August 8th, 2012, I was diagnosed with fibromyalgia. I sat in a waiting room next to a boy with Cerebral Palsy, a smiling little girl whose mother was crying the entire time, and my mother (while my dad worked out insurance details). It was the first time the truth looked me in the face with a smug smirk. It was the first time I allowed myself to wonder what my life would look like when I walked out of the hospital. It was the first time I realized that I would never be a normal girl again.

 

Now I know that when something bad happens to a person, all they want is to go back to where they were before it happened. I think that with hardships, we tend to warp whatever was before into an amazing place we want more than anything. But was it really always that great? Ever since that fateful Wednesday, all I’ve wanted is to go back to the time before my fate was sealed. But today… today I have really felt, for the first time, that there’s no point going back. If I really wanted to go back to a time when I was happy, I would have to go back to age 7, before my family moved to other side of the world and life itself became one big hardship. Looking back, pretty much since then it’s been one thing after another… it just seems like a lot of bad stuff has been coming my way.

 

So considering that, do I really still long for what things were like before I was diagnosed? It wasn’t really all that great. Neither is now. All I can really hope for is that my future is better. I have learned not to tempt fate, never to say “from rock bottom you can only go up”, because I have discovered there are things more bottom than rocks. Like mud. And snakes. And bugs. I really don’t like bugs.

 

I can’t change my past. My attempts to change the present aren’t proving fruitful. And what do I know about my future? What if I find out that for the rest of my life I will be longing for what I have right now? I’m laughing at that thought, in the dead hollow that seems to be my inside, because why would I ever yearn for this nightmare? But who knows. I just hope I don’t.

It’s hard to express my hopes for a brighter future, because when I say them out loud to another person, the crippling thought of “what if I’m still sick? What if by that point, I can’t get out of bed?” comes back to me and I shut up.

 

But to you, I will express these. Here, on this blog, I will write down my thoughts and my hopes for the future. I love writing, and everyone has told me that I have a future in it too. I have a lot of things to say, and I have written a lot of them down. And now I have a place to post them.

If you have any questions for me, feel free to ask them. If you have words of encouragement, I would love to hear them. If you have judgments to pass, remember that if you don’t have anything nice to say, you shouldn’t say anything at all. I don’t need any more bullies.

Hope to here from you soon,

Be kind,

Ella

Song that’s stuck in my head and magically goes really well with what I’ve written:

“Believe I’ve got high hopes… But the world keeps spinning around.” ~High Hopes, Kodaline