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)

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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?

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.

What A Wonderful World

photo

Took this on the plane on the way to London! Just realized it looks like every other cloud picture ever taken, but oh well….

Hundreds of years from now, an old notebook will be discovered, in which a girl wrote about her thoughts and experiences as she travelled. People will marvel, at those things called ‘paper’, and ‘ink’. They will get a sense of what it used to be like to travel, with planes and trains, cabs and busses. They will be shocked at the fact that once upon a time, someone had to sit down and write what they were feeling, that they stopped because their arm was tired.

 

But for now, in the present, I’m very simply keeping a diary. I’m a week and two days into my vacation, and my notebook has about 100 pages full of words. I’m now in London, and before that I was in Budapest (Hungary), and Bratislava (Slovakia). I’m travelling with my parents and two older sisters.

 

It’s been amazing, seeing these different places where people speak these weird languages (not England, clearly), and lead different lives. There were a few things I saw everywhere I went, and these were them:

 

–       Babies! I just absolutely adore babies!

–       Couples, who were holding hands/ hugging/ kissing/ all of the above

–       Monuments to people the locals killed (which totally pissed me off. Let’s go murder people, then we’ll erect a statue that says how tragic it is they died. Yay! Not.)

–       Outfits/ fashion trends/ clothing. This has been particularly fun, because my sisters and I have taught our dad to notice it too, so every now and then he’ll go, “I liked that dress”, “That looked interesting”, or “Is that a mini, midi or maxi skirt?”

–       Other tourists.

 

Of course, there were many more, but I happen to not have my notebook with me right now. It’s actually not been such a great day, that’s why I have time to write. Here’s the part in most posts where the Fibromyalgia* segues itself in, and this post is like any other.  It’s been hard travelling while not feeling well, extremely hard. It takes away from the enjoyment and the sense of peace and wellness you usually get on vacation. I so wish I felt better, I wish this didn’t have to segue in all the time (though I like the word ‘segue’).

 

Despite all of that, and my bad mood today stemming from feeling like dog poo, I have been having a great time. It’s nice to not be at home, or at school. Change of pace, yeah? That was in a British accent. Almost everything they say here ends with a question, right? There it was again. In fact, I’ve been reading all of this in an accent. Random craziness, no?

 

I’ve met bunches of interesting people, had experiences that I’m not sure I liked, but that I’ll never forget (and that’s worth something- I’ll probably write about a lot of them in the near future), and felt like I gained world perspective again and again.  You know me, and my Big Thinking Moments**. Let’s just say that I feel like I have been living Big Thinking Moments most of the time here.  No matter what the rest of vacation is like, it was worth it for those.

 

As I wrote in my notebook (I just found it),

“… had like this barrage of Big Thinking Moments. I realize I’m really hopeful about the world and about life, and I’m just realizing how amazing everything is. That we are alive, we have thoughts, we have bodies, they have functions. We all look different, act different, dress different, but are built the same. There are families, and places around the world, and beauty, and genius. There is creativity, and history, and society, and money, and… all of it! Everything!     ……

     I have so much respect for life, and I just want to live, experience, learn, and love, and I feel like those aren’t just words, like I know what they are and what they mean. I’m really just excited, not in a rush, living and feeling in the here and now, and I want to say this: I LOVE LIFE. I do. No matter what, life is the most incredible thing out there. I hope and pray I can feel like this for the rest of time.”

 

Wow, well I’m glad I found my notebook just now. I don’t have anything else to add to that, I just really agree with myself.

 

I hope you love life too,

Ella

 

Song Quote:

The heart is hard to translate, It has a language of its own, It talks in tongues and quiet sighs, and prayers and proclamations. –All This and Heaven Too, Florence + The Machine  (This is one of my absolute favorite quotes, I reserve the rights to use it again!)

 

*Check out my new page, “Fibro- what?!”, for info on what that is.

 

** I hope I actually did explain those well enough, because I’m using the term as though everyone understands what they mean. Should I add a page about them? I recently discovered that you can add pages. It’s cool. I think I’m in love. Not really. I just like them. We have a friendly working relationship with them.

Apparently, I am simple.

Baby at the beach

What I felt like doing the second I got out of his office…

I went back to the homeopath, the one that “I’m Not That Simple”  is about. Joyful, right? Well.

First thing he says to me is “Ella. You look better.” I got this feeling inside that I was about to have the most wonderful experience of my entire life. Really. I’m being serious.

No I’m not. First, he did the same thing that annoyed me last time (which I could say about a hundred things, so I’ll be specific). He read out every symptom I have, and asked me if I still have each one.

Me: We can just skip this, I feel exactly the same.

Dr: Exactly the same?

Me: Yes.

Dr: But you look better.

Me: I tanned.

Dr: You have more color in your face.

Me: Because I tanned.

Dr: So you still have the head aches?

Me: Yes.

Dr: And they still start in the morning?

Off we go again, repeating it all. I’m really not going to rant about this too much, I did that last time. The one major thing that bothered me (again) was that he was still trying to peg my Fibromyalgia on one specific event.

Dr: Ella, what do you think happened that gave you Fibromyalgia?

Me: I don’t know.

Dr: (pulls a snotty face) you can give a better answer than that, Ella. (Annoying usage of my name.)

Me: I don’t know. It happened. Life happens.

Dr: What do you mean by that?

Me: What do you mean what do I mean? Stuff happens, in life. Fibromyalgia happened.

Dr: So there wasn’t anything specific?

Me: No. We went over this last time.

Dr: Well Ella, I can’t remember everything.

Clearly. I was starting to get very upset at this point, because I know they have to ask, and often Fibro is caused by accidents or traumatic incidents, but we had already been over it. We had already told him it wasn’t like that, and that it wasn’t a psychological trigger. It literally just happened. I started getting this pain, then a year later, that pain, a few months later, another, and within another few months I was a wreck, and we were scrambling for appointments at the children’s hospital to get me diagnosed. It happened. It’s happening.

Do you want to hear the best part?

Dr: Oh, now Ella’s angry. She’s got that fire in her eyes. You definitely seem better than last time.

Me: Yeah, last time I was kind of having a bad day (slightly sarcastic, you can imagine).

Dr: A very bad day.

Me: Yeah. Thanks.

That’s it, I’m done now. It sucked. He put me on a new “remedy” (didn’t explain this one either), and just to make it more fun, I have to take it twice a day rather the one, like last time. I eat like a bird, people. I need food, every 20 minutes. With this remedy, I have to not eat anything for half an hour, take it, then wait another half hour before eating. The problem is, I forget to take it until I get hungry, and then I think, shit. The medicine. So I take it, but that extra half hour is torture because I’m already really hungry.

But, it seems I will just have to deal.

I get major points for not losing my temper.

Your truly,

Ella

Song Quote:

A white blank page and a swelling rage… So tell me now, where was my fault? -White Blank Page, Mumford and Sons

P.s. What do you guys think about me adding a page (next to Home and About) about Fibromyalgia? The technicalities, I mean, what it is (to the best of my ability), what my personal experience is, sources for more info? Let me know.

 

Update (07.24.13): I’m off an vacation in a few days, so I don’t know when I’ll be able to post again or when I can sit down and work on the info page (I probably won’t have access to wifi for a while). Sit tight, I will return with a lot to tell, and the info page will make its way here. Thank you all again!

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