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)

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.

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

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

Pancakes Solve Problems

Image

I made them from scratch!

It’s been a rough couple of days. Sometimes there is just a lingering sadness, that you can’t seem to get rid of. It’s been lingering of late. I’ve been fighting it, these past few days. But the combination of the sadness, of how uncomfortable I have been physically, and of missing my dad (away on business for the past 3 weeks) has just pulled the fight out of me.

It’s a push and pull trick, keeping the sadness at bay. Sometimes it’s easiest to not acknowledge it, sometimes it’s easier to write about it. But no matter what I try, the process always stays the same. I try to fight it for a little while, and then something small will make me cry and everything will come rushing out. Rushing out to myself, though. I don’t share these moments with other people, because that wouldn’t bring to anything good. It’s not a moment where I need a pep-talk, or a hug, or sympathy. It’s a moment where I need to say hello to the sadness, and let it out to roam the room. When I’m ready, I let it back in and I move on.

There’s something funny about the moments that make me cry. They can be totally trivial, like seeing a cat on the side of the road, missing a phone call, someone misunderstanding something I’ve said or realizing I don’t have any milk for my cereal. Other times they truly are upsetting, like today. I got an 88 on my math test, which isn’t that bad a grade, but I was expecting much more. I made one mistake, on the whole test, and it happened to be worth twelve points. If I hadn’t made that mistake, I would have gotten 100. I’ve been working my butt off all year in math, and this was the last test. I studied so hard, and I felt really prepared. I took the test, and it went really well. I came home with a good feeling, and told my whole family that I think I did well, even better than last time (which was a 93). Now I have to tell them all that I got an 88, which, again, is not such a bad grade. It’s just upsetting, is what I’m saying.

So basically, the moment comes and I let the sadness out, in wretched sobs that tear their way out of my soul. I curl up in a ball, cry, and the anguish takes up residence. After a few minutes, I run the bottom of my wrists under cold water, dry my tears, accept the sadness, and go do something productive. That’s how it ends, until the sadness comes a’knockin’ again.

So today, walking home from school, I listened to Chocolate (by The 1975), which is a strangely uplifting song, then I came inside and let myself cry. After that, I marched to the kitchen and made pancakes. Yeah.

I don’t know if I’m ever going to really be able to make the sadness disappear, because it feels like it’s here to stay. But I think I’m handling it pretty well. I’m a dealer. I deal with the stuff that life throws at me (not drugs). And when things get too hard again, I’ll make some more pancakes. Because hey, pancakes solve problems.

Pancaking,

Ella

Song Quote:

Come on, what would you do? Get up on my feet and stop makin’ up tired excuses. -What Would You Do, City High

P.s. Thank you to Kiersten and Chewitt over at Socially Oxward, for nominating me for The Very Inspiring Blog Award! 

http://sociallyoxward.wordpress.com/2013/06/14/the-much-delayed-vi-blogger-award/