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.

Wake Up Tomorrow

Tomorrow, I am going to wake up, and everything will be different. Better.

When I wake up tomorrow, my first thought will not be about pain. My first emotions will not be anxiety, fear, apprehension and sadness. I will wake up warm, cocooned in my blanket, feeling refreshed. When I open my eyes, I will look forward to my day.

When I wake up tomorrow, I will not be upset with my family. I will not feel like they say the wrong things. I will not be annoyed with them.

When I wake up tomorrow, I will not have to forcefully remind myself to appreciate what I have. Everything will feel so right that appreciation will come naturally. I will look at my life, and be pleased.

When I wake up tomorrow, I will look in the mirror and be happy with what I see. I will not think about how that girl’s hair looks better, how that girl has a better profile, or how that girl’s figure is nicer. That girl will not haunt my mirror-gazing.

When I wake up tomorrow, my day will not scare me. I will not think of each day as an age, each hour as a mountain to climb. I’ll be excited, about the possibilities each hour poses.

When I wake up tomorrow, I will no longer have Fibromyalgia.

These are my tomorrows. I live in today.

When I woke up today, I told myself to think about the dream I had. When I saw my family, I accepted, dealt with, and loved my interactions with them. When I looked at where I live, what I have, and who I know, I willed the appreciation to feel natural. When I looked in the mirror, I smiled. This hour, right now, is full of possibilities.

I have Fibromyalgia.

If I don’t have today, I will never have tomorrow. I welcome you, today.

Yours truly,

Ella

Song Quote:

I awake to find no peace of mind. -Spies, Coldplay

I’m Not That Simple

 Image

I am a person, with feelings, memories, thoughts, opinions, experiences, and a personality. I can’t be described in 140 characters, you can’t get to know me in an hour, and you won’t ever be able to know what I’m thinking.

I had a not so fun experience yesterday. It involved a man, who calls himself a homeopath, who kind of pissed me off. Sorry for the language. I have this little thing, which is that I hate doctors. I’m sure I’m not alone in that. When I was younger, I quite liked them. I would have a sore throat, show up, they would give us a slip of paper, that got us some meds, and my throat would get better. Magic.

But now, the same process occurs, every single time, no matter which doctor it is. I come in, already upset (because I hate doctors), and my mom and I sit down on their uncomfortable chairs. My mom pulls out my humongous medical binder, and hands them a bunch of papers. They take their time, reading it out loud, because of course, I don’t already know what they say. They look up and make disbelieving eye contact when they read about the Fibromyalgia, the cancer, the narrow angles. What is there not to believe?

Then they give me this smile, and say something along the lines of “your life sucks”. But in a condescending way, which is very simply rude. Then they make me repeat everything they just read, and whenever I mention a pain, they ask me what relieves it. I tell them nothing. They repeat me. You know what, I’ll just write this out, it’ll be easier.

Me: My head aches are probably what bother me the most.

Dr: The head aches?

Me: Yes.

Dr: So what helps those?

Me: Nothing.

Dr: Nothing?

Me: Nope.

Dr: You haven’t found anything that helps?

Me: That’s what I’m telling you.

Dr: *disbelieving eye contact, insert variation of “your life sucks”*

Me: *Sigh*

Dr: So what else hurts?

And the whole process repeats itself, over and over again. Then they ask me to step up onto the bed, and they poke me. Literally. Then they ask me if that hurt. I say yes. For instance, the “homeopath” yesterday decided to tap my face (where there are a billion Fibro trigger points). It went like this:

Me: Ow.

Dr: It hurts when I tap your face?

Me: Yes.

Dr: How about now?

Me: You’re still tapping my face, and it still hurts.

Dr: How about if I tap lightly?

Me: Seriously, anytime you tap my face, it’s going to hurt.

Dr: *mumbling* wow, your pain threshold is very low.

Me: No shit, Sherlock. That’s why I’m here.

Although that last line is only said in my head, because I don’t like swearing. Swearing is reserved for doctors.

Anyway, all of that happens every time I go to the doctor, and I put up with it every time. What really pissed me off yesterday was that the “homeopath” told me he wanted to get to know me, know what kind of person I am, because that affects what might help me. So he asked me to describe myself, using a few words. Insert the first paragraph here. So my mom took over, and I just let her talk to him. Then, he was trying to find out if something specific happened that triggered my fibromyalgia. I told him there was nothing, that it just started slowly coming on.

Then my mom said something along the lines of “there’s stress in life, because it’s life. A lot of stuff has been going on for us, if that’s what you’re asking”. Then he asked her what she meant, and she said, “for instance, my mother passed away a couple of years ago”. At which point I started crying, because… because.

So this stupid “homeopath” started trying to connect my Fibromyalgia, with force, to my grandmother dying. He only stopped when I gave him a look and said “I don’t understand why we need to be talking about this”. I’m pretty sure he was scared of me, because he seemed to shrink and changed the subject. Guess what he changed it to? “Do you get angry?”

My god, of course I get angry! For instance, I’m angry at you right now! That’s what I wanted to shout at him. But I didn’t.

Me: I’m human, I get angry sometimes.

Dr: Like when?

Me: When it’s right.

Dr: Do you get angry easily?

Me: I have a lot of patience, if that’s what you’re asking.

Dr: *Insert disbelieving look here.*

Wait, I haven’t even gotten to the best part yet! “Mom, does Ella like being hugged?” I’m not kidding right now. He asked that. So my mom, bless her, said “Of course she does! Gently, of course, so it doesn’t hurt, but she’s a very loving person”. So he turns to me and he says “So who do you give this love to, Ella?” People, you should have seen the look I gave him. As my dad says, if looks could kill…. I crossed my legs and said “The people who deserve it”.

Insert disbelieving look here. Sensing a theme?

I could just go on and on, with all of the horrible things this guy said over an hour. But I won’t, because it’s probably not very interesting or fun to read.

My point is, this “homeopath” decided he had to get to know me, and that he could simply do so. Yeah, right. Jerk.

He ended the meeting with “So Ella, you’re a warm, creative, responsible person. Therefore, I’m going to give you these pills, because with the kind of person you are, that’s what could help”. He set them on the desk in front of me.

Me: What do they do?

Dr: They help even out your body, so it can cope with what its going through.

Me: How do they do that?

Dr: What do you mean?

Me: I mean, there’s a substance in those pills that’s supposed to even me out. How does it do that? What’s the substance?

Dr: That would be a very long discussion.

Me: So?

Dr: These will help, that’s what is important.

Which made me feel like he’s a drug dealer, or that I’m being checked into a psych hospital. What’s for sure, he was totally scared of me at this point.

Me: What does my personality have to do with the pills?

Dr: Sometimes an illness comes to a person, and sometimes the opposite.

Me: And…

Dr: If a person falls, it breaks a bone. The doctors fix the bone, but then, the recovery depends on the person.

Me: Unless the doctors suck and mess something up. But recovery depends on the person’s character, his situation, his support system. Not the pills he’s taking.

I don’t even remember how he answered that one.

I was very happy to leave that office. Except I have to go back in a few weeks. Oh well. I’ll come up with some witty retorts for next time.

You, lovely readers, don’t assume you know me after an hour. That’s why you rock.

Yours truly,

Ella

Song Quote:

Don’t wanna sound ridiculous, but I think you know I’m sick of this. -My Oldest Friend, Andrew Belle

It’s a Landmark

Reaching for the light

People everywhere celebrate landmarks in life. Birthdays, anniversaries, new beginnings and so on and so forth.

This week, I’m celebrating the end of the school year. Every student out there will tell you how and why they celebrate finishing the year, and almost all of the reasons will be along the lines of “I worked really hard this year, and I’m happy to get a break”. That’s true for me too, don’t get me wrong. But it’s also something more.

June 20th marked the end of my first school year with Fibromyalgia. It means I survived a whole year of school, whilst suffering from the head aches, the fatigue, the joint pains, and that now it’s over. Everyone is asking me how it feels, do I feel so great that I succeeded, am I overjoyed that the school year is over. To be perfectly honest though, it just kind of feels… blah? Not blah, just that it doesn’t feel like that huge of a deal.

I’m not explaining myself right. I feel happy, and satisfied, and proud (I have the highest GPA of my grade!!!). It’s not that I’m thinking the year wasn’t that bad and therefore it’s no big deal to finish it. It’s not that. I actually had a really, really hard year. I’m elated that despite all of my hardships, I managed to achieve what I set my mind to, which was to not let Fibromyalgia affect my grades.

I think it just hasn’t fully set in yet, that I’ve finished. This is only really my 3rd day of vacation, because of the weekend, which I always have off. Maybe by next week I’ll be feeling it for real.

For now, I’ve been trying to get the most out of days without school. I have reorganized and labeled our spice drawer, I have buffed up my iTunes library, I have read, I have watched TV, I have gone to get frozen yogurt, I have painted, I have sketched, I have gone to art class, I have shopped (online), I have exercised, I have gone to the beach, I have… Have I mentioned I’ve only been on vacation since Thursday?

Keeping busy, I know how to do that.

I really want to make the best of this summer. I have so little free time during the year, now is when I get to engage in all the projects I don’t usually have time for.

I’m going to tell you a story now.

It is custom, where I live, to go to the beach on the last day of school. So, the entire middle and high school population of the extended area flock to the beach, to “celebrate”. Ultimately, each person gets an inch by inch square of sand, and an ankle in the water. T’is enjoyable. My friends discovered that a certain area of a certain beach, that is farther away, is less crowded, and you can rent chairs to sit on (though because my friends are the way they are, they usually put their bags on them and lay on the floor to tan. I really don’t get it). It means we needed to take two busses and a cab to get there.

We went to the same place last year, and it was no fun. This year, because these girls have the gift of people-speaking, we agreed to go to the same place. This time, though, something nice happened. We arrived in two groups, and the other group had arrived before mine. When we walked to “our spot”, one of the girls looked up and said, “Ella, I got you a chair, I thought it might be easier for you to sit that way”. I swear I almost burst out crying. It only just took a year for this girl to acknowledge that I have a physical disability, and that she should be nice about it. Most of me was just really happy that she was nice, but a part of me was upset that it took her this long. Of course, there was a rotation of who was sitting on the chair, because I wanted to be in the water (not lying on the sand tanning). But I think that’s what made my afternoon, that the girl who laughed when I told her about my condition was finally finding kindness, deep, deep down inside her. I feel like it’s a personal accomplishment.

FIN.

Incredible story, right? I know.

I smell summer in the air. I like summer fashion, summer hair dos, summer time tables, summer freedom. Waking up to a blue sky is uplifting, and I’m feeling like I can accomplish things. I don’t know what exactly, but what’s important is that I feel like I can.

Wishing you all a beautiful, happy, accomplishment-full summer,

Ella

Song Quote:

Where does the time all go forever? It hides in your eyes, in a picture, in another place’s sky. -More Than Letters, Benjamin Francis Leftwich

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

The Little Things

balloons against sunset

I like writing g’s, because it’s fun. I like bobby pins, balloons, stools, mug handles and zippers. I like honesty, erasers, flags, glue, furniture, faucets, blankets, railings, calculators and magnets.

I like the little things. Only recently have I been able to curate such joy from all of these, and it’s a good thing I have. I’ve been having a hard time, with a lot on my plate. Too much. It’s like when you’re at a brunch, and there are so many good foods that you just take a bunch of everything, but your plate is way too small to hold it all. As much as I try, after piling it high, there simply isn’t any more room for those five pastries and two apples I want as well. No more room.

But then, if I’m going to continue this ridiculous metaphor, I suddenly realize how beautiful it is that apples are juicy, and that the pastry I’m stuffing in my mouth was just dough a few hours ago. I see the stool in the corner, the blanket over the couch, and the mug handle I’m be holding. I’m just so filled with glee that I don’t notice that everything on my plate has just fallen on the floor and is now sticking to it, thanks to the glue I spilled earlier.

FIN metaphor.

What I’m trying to say is, maybe my days will look brighter now that I’m seeing the positive light. That was a pretty sentence. Maybe, this is what I need in order to start coping with everything going on: a little appreciation of the underlying particles of my day.

A few posts ago, I talked about “big thinking moments”, when I realize how big the world is and I have really deep moments. Maybe writing g’s plays into that somehow. You know, that whole “big things are made up of small pieces” talk that I wish I had gotten as a kid, but that I now give myself daily.

Living with Fibromyalgia, a chronic pain illness, you sort of start to realize that if you don’t appreciate the small things you have, you won’t have all that much to appreciate. And that sucks.

So now, I enjoy zipping up my jeans, and I smile at my faucets.  I decorated the entire girls bathroom (at school) with Winnie the Pooh stickers, because maybe that can make someone else smile. I’ve started bringing extra forks with me, so every day, I’m someone else’s hero (because I give them the gift of food. Well, the gift of being able to eat their food. Same silver).

All of these, make me feel that maybe I can live with Fibromyalgia, and maybe I will make it out okay.

Huzzah for the little things.

Yours truly,

Ella

Song Quote:

The world looks better through your eyes. –Firefly, Ed Sheeran

P.s. Just checked, the post about “big thinking moments” was I Am Effervescent.

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