I Am Strong

quotes-about-being-strong-being-strong-quotes-41194

I’m done. I am done with being sick. I don’t care if my body agrees with me or not. I am ready to be healthy again. My fears will all go away. My worries will come to naught. My strength will come to light.

It’s time to get my life back. No, that’s wrong: it’s not time to get my life back, it’s time to get my life. A life in which I am able to achieve what I set my mind to, a life in which I am no longer held back by things that are not in my control, a life in which I am free.

Freedom is a simple word with a simple concept. The definition of freedom is:

1. The power or right to determine action (think, speak, act) as one wants without hindrance or restraint

2. Exemption from external control, interference, regulation etc.

3. The quality or state of being free

But the truth is, that freedom means something completely different for each and every one of us. There are the technical definitions of the word, and then there are the definitions we hear about in songs, read about in books, hear about from the people we look up to and figure out for ourselves.

I’ve been waiting for freedom for a long time. I haven’t been sitting around waiting for a phone call to tell me I’m free. I’ve been working hard. I don’t think that sheer will power is going to make my Fibro go away. If that were true, it would have happened already. I’m not sure I believe that the current treatment plan will help me. I don’t know if this will ever go away.

But I do believe that I am strong. Until now, I was hoping that my strength would help me through. Well, I’m done with that. Now, today, I know that my strength will help me through. I don’t know when, and I don’t know how, but I am strong and it will happen. I don’t care that this week was bad, that I was clearly not better this week. I don’t care that I don’t get to eat comfort food. I don’t care that I have to force myself to exercise even when my body is screaming with pain, trying to shut down because it doesn’t agree with me that I should be moving.

I care about the fact that I don’t get to participate in things with my friends. I care about the people who have been with me all this time. I care about getting better. It’s time.

Are you with me?

Yours truly,

Ella

 

Song Quote:

If the clouds don’t clear, then we’ll rise above it, we’ll rise above it. –Before the Worst, The Script

 

 

Quotes about freedom that I used in a speech I wrote last year:

Freedom is not worth having at all if it does not include the freedom to make mistakes. -Mahatma Gandhi

The most courageous act is still to think for yourself. Aloud.  -Coco Chanel

I disapprove of what you say, but I will defend to the death your right to say it. -S.G, Tellntyre

You wanna fly, you have to give up the sh*t that weighs you down. -Toni Morrison, Song of Solomon

It was, he thought, the difference between being dragged into the arena to face a battle to the death and walking into the arena with your head held high. Some people, perhaps, would say that there was little to choose between the two ways, but Dumbledore knew — and so do I, thought Harry, with a fierce rush of pride, and so did my parents — that there was all the difference in the world.  – JK Rowling

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Never Feeling It Again

Origin-of-Acupuncture

There were two days last week that came and went without my headache showing up, and I’m scared. It doesn’t make any sense to be scared, I should be happy that I might be getting better. Actually, I should be way more than happy, I should be ecstatic! But I’m not. And I’m trying to figure out why.

I’ve waited for this day for so long, for a day that’s headache-free. It’s been over two years since I’ve had one. Every single freakin’ day I have pain. There’s really no exception. But I’ve been on a new treatment plan, made up of three components: a concoction of herb extracts (nicknamed “potion”) taken twice a day, acupuncture, and a gluten-free, dairy-free, processed-free diet. I was told that if I follow the plan, I should be feeling much better after three months. To say I had full faith in it would be a gross exaggeration. I’ve been told that many times before. In fact, two and a half years ago I was told my recovery time frame will be two-three months.

But because I had two days without a headache, everyone around me asked me if I’m feeling better. Actually, I was told by other people that I’m feeling better, based on my behavior, apparently. So I started to really believe it. Excited, I happily shared the news with just about everyone that I might be getting better.

But now I know what I’m scared of. What if this is a fluke? What if this week is just a hiccup, and I go back to my sorry state and stay sick for many more years to come? And now everyone thinks I’m getting better, everyone is going to expect me to act healthy and be happy and yadda yadda yadda. I’m going to have to play the thankful survivor who made it out of the darkest time in her life. But I don’t want to! First of all I don’t want to do that even if I do keep getting better, and I especially don’t want to if I don’t keep getting better.

It’s like suddenly there’s all this pressure.

What if I don’t know how to be healthy? Oh great, I’m crying again. I hate when this happens. But seriously, what if I don’t? It’s been so long. Being healthy is something I dream about, not something realistic. I’m so used to being sick by now. It’s just my life, and it has been for a while. All this time I’ve viewed fibro as something that’s holding me back. But how much of it is ingrained in me already? How much of the sick person will disappear once I’m no longer sick? This isn’t just a blip in my medical history, it’s become (unfortunately) a part of who I am. So that’s it? If it even goes away, everyone will just expect it to disappear from me. They’ll think, why is that girl so ungrateful? It’s gone, why is she so caught up in the past?

But… But… I don’t know what to do with myself. I’m still working my hardest to get better, following the plan, exercising, not over-doing myself. And I’m training myself to see the positive in getting better (which is ridiculous, because it’s literally been my dream and goal for years and I’ve just been yearning for it, but now it feels like some impending doom, which probably means there’s something wrong with me and I’m ruined for life), but it’s scary.

It’s scary because I also don’t want to let myself believe it’s happening. What if it doesn’t? Then it’s just this tempting tasting of what I need and it’ll be taken away from me once I stop being scared of it.

Do I even make any sense? My tears are blocking the screen, I can barely follow what I’m writing.

Yours truly,

Ella

Song Quote:

Seems to me like I’m just scared of never feeling it again. –High Hopes, Kodaline

 

P.s. Cameron Von St. James sent me an email the other day, letting me know about a beautiful tradition his family has started since his wife got sick with cancer and needed to have a lung removed. They created a beautiful website (you only get the full experience if you view it on a desktop), and I’d like to share it with all of you:

http://www.mesothelioma.com/heather/lungleavinday/#.UuTHdf3g7u0

Okay, What Now?

 

 

Stick Figures

 

I want to reach out my hand and participate, but before my hand can move a fog wafts before my brain and all optional activity halts. I stop thinking, stop moving, and stop feeling. Then, surprise surprise, I feel disconnected. For the past two weeks, it has just felt like I’m going through the motions but I’m not really there. Though feeling disconnected can happen to anyone, this feels like fibro fog. I hate it.

The only times when I’ve felt present in these couple of weeks has been while driving. I’ve had four driving lessons so far, and I love it. When I’m driving, I have to be present, and nothing else exists in my brain except the steering wheel, the pedals, the driving teacher and the road. And other cars and pedestrians, I guess. But it’s like there is nothing wrong with life, nothing sad or hard going on, no headache even, because I am completely focused on being alert and aware of my surroundings and in control of where I’m headed. It’s a welcome change, being so wholly focused on one thing that I can’t feel pain.

Sometimes I just don’t know what to do with myself. Lately I end up in these situations where I get to a certain point and I go blank; what now? Like talking to a group of people, for example: we’re talking, getting along, I feel happy to be with people, and then suddenly I just feel my brain being wiped clear and I’m vacant inside. I’m looking at the people around me, at my friends, and I just don’t know what I’m supposed to do next. Do I say something? Should I get up? Should I stuff food into my mouth? I usually do the latter, but it has become increasingly hard seeing as I’ve been put on a gluten-free, dairy-free, processed-free diet for medical reasons. You don’t really get to have comfort food when you’re on a fun-free diet.

I told my friend about this void that appears within me, and about how unmotivated I seem to be (notice the missing post that should have shown up a week ago but that I never wrote), and she told me that she understands and maybe I need to give myself a break. So I did. Well, sort of. I did whatever homework was for the following day, but didn’t plan ahead and do the opposite of procrastination (which is what I usually do because I seem to have been born that way). It helped a little, mainly with feeling guilty about not getting things done; when you decided not to do it, it’s less bad than just not having the inclination to do it. That said, the feeling still showed up today, and I feel it looking back on everything that has gone on. I still feel detached.

I’ve decided it’s just a defense mechanism, and it will go away. I’m sure everyone gets this way sometimes. We wouldn’t be human if we didn’t have a wide range of emotions, and feeling disconnected is somewhere on that range. This is life: I embrace it. There are going to be ups and downs. Like hills. Which I have mastered. Ooh I have a good metaphor similie thing!!! I know when to press the gas, and when to use the breaks- I know how to take care of myself. Ah get it?! Oh my, I am so so proud right now. Just saying.

Also, Tim over on tcopelandfilm/storiesnotworthreading wrote something that was inspired by my blog. I suggest reading our discussion at the bottom of the page because it actually made way more sense to me after he replied to my comment and explained where he was going with it. Thank you, Tim, it meant a lot to see that what I’ve been writing has been able to inspire someone else.                                                http://storiesnotworthreading.wordpress.com/2013/12/27/hinged-lives/

 

Yours truly,

Ella

Song Quote:

I took a walk on a Saturday night, fog in the air, just to make my mind seem clear. –My Fault, Imagine Dragons

P.s. It’s been forever since I sat down to write something. This feels good. Anyone else notice that I’m getting frighteningly close to a thousand followers?! Technically it doesn’t count until 1001, because I do follow myself, but 1000 is just a prettier number.

 

 

Sharing Is Caring

That’s what I have been taught my whole life. It was the mantra repeated throughout my childhood, and is the nostalgic phrase thrown out in my present. I wholly believe in it.

I’ve had a sharing kind of day. My dad lent me his sweater, I brought some food from home for my friend, another friend shared some of hers with me, I shared my scarf and hat with others who were cold throughout the day, I received yarn as a gift from a friend for whom I knit a hat, and I got a ride home from someone because it was raining. It was all really great, and it got me thinking.

So, sharing is caring, right? We’ve established that. If so, why can’t I share my pain? Why am I the only one of my friends who’s suffering every minute of every day? Why am I the only one who has to worry about her health and her treatments all the time? Why am I the only one who isn’t healthy enough to participate in things?

It’s not that I want my friends to feel like this. I wouldn’t wish Fibromyalgia on anyone, ever. It’s just that I’m frustrated with feeling so alone in it. I can talk about it with my friends, especially a couple of them who are really there for me with this stuff. My class knows what I have (after a really messed up year of it staying a rumor despite the fact that I told everyone what it was). I talk to my parents; they know exactly what I’m going through. All of that is great, and not to be underrated.

But no one feels what I feel. No one knows what it’s like to have this pain, to feel so sick all the time. Anyone who doesn’t feel what I feel the way I feel it would have no way of ever understanding what it’s really like. And that makes me all alone. People care about me, but I can’t share this. I’m the one who wakes up and goes to sleep this way. I’m the one who sits in class with pain travelling through her body. I’m the one who stands talking with people, but is usually actually fighting a migraine, knee pain, exhaustion and more to do so. I’m the one who’s hurting. 

There’s really no solution to all of this. Even this blog isn’t the solution. It helps a lot, don’t get me wrong: seeing positive comments and a show of appreciation for what I write makes my day a lot of times. But it doesn’t take away the pain. I try to keep up with normal life, with the things people my age are doing (by the way, the driving license picture ended up coming out great!). But at the same time, I’m also a really old person: I can predict rain. C’mon, no one my age is supposed to be able to do that. My knees swelled up last week, while my friends were all on vacation in locations around the world, because the weather was changing. And yet I still can’t figure out when to bring my umbrella.

I’m tired of hurting, and of feeling alone. Just tired of it.

Yours truly,

Ella

Song Quote:

It’s taken me a while to tell you, exactly how I feel inside. The words, they may seem simple right now, but they took me a while to find. –Be Alright, Lucy Rose

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.

Excavations

Copyright sickandsickofit.wordpress.com

The excavation site

Hidden beneath a pile of other important things in my drawer, lies a folder that is full to the bursting with slips of paper. Every page has some words, written at some point in my life, and when I open that folder, I travel back in time.

It’s amazing really, how I’m instantly transported to how I was feeling, where I was, and what I was doing when I wrote something down. There have been many days in my young life, but the ones that I remember the most are the ones when I had a sudden urge to write- and I took myself up on it.

Sporadically in life, pretty much from age six, I would get bouts of motivation, generally in the direction of: “I’m gonna be a writer!!! I’m gonna get published! I’m going to be in The New York Times!” During one such bout, when I was around twelve years old, I sat cross legged on my bed, and wrote something on a piece of ripped notebook paper. It was my old bedspread, the highly colorful one, and I was staring at the mirror that was glued on the back of my door (before it fell, and broke).

This is what I wrote:

   I wish my mirror were my life. When I look in my mirror, I see what I am meant to be. I see myself with a fancy hair do, all dressed up at my very own book signing. I want to be famous for my writing.

  I look in the mirror, but I don’t look the way I really do. I look like a writer, posing for a picture while she writes her next bestseller.

  My mirror is the only one that knows; knows what my life should look like.

To be honest, there are pieces written in bouts of motivation from when I was much younger than 12, but they’re slightly embarrassing, so my drawer is their permanent residence.

Besides the motivated snippets, the folder is mostly full of products of hard times. It’s sad to think sometimes that most of my poems are ones of great depression, sadness, guilt and discontent. At the same time, that’s what I use my writing for: it’s a place I can turn to when it feels like nothing else is right. To quote the great Oscar Wilde,  “Words! Mere words!… what a subtle magic there was in them! They seemed to be able to give a plastic form to formless things, and to have a music of their own as sweet as that of viol or of flute. Mere words! Was there anything so real as words?”

Fast-forwarding a year, I sat after quite a horrible day and wrote this (and I’m making sure not to edit myself, even though I really want to):

Why is the world such a hard place to be?

Why can’t I just spread my wings and be free?

Be heard, be known, for the things I can do,

Let it be known, that I will make it through.

 

I don’t want to think that no one will hear it,

If I fail, I won’t admit it.

I just want a chance to be heard,

Help create a better world.

 

I don’t think that’s taking it too far,

If I just keep trying,

It can’t be too hard,

I will keep reaching for the stars.

 

But it all comes back too:

 

Why is the world such a hard place to be?

Why can’t I just spread my wings and be free?

Be heard, be known, for the things I can create,

If only there wasn’t so much at stake.

 

My hopes my dreams, my innocent will,

To help the world with the best of my skills.

I can write the poem, that comes to terms with the world,

With just that single world that will be heard:

 

Free.

 

But now a tear is tracing its track down my check,

For in writing, it certainly sounds absurd.

 

At least it  has a slightly positive edge to it. Some of these transport me to a really, really bad time. Like this one:

Let’s make the bed,

Fold the dirty clothing,

Pack up our bags,

And hang up the happy drawings.

 

Throw away the tissues,

Return the garbage to its place,

Comb through our hair,

And patch up our face.

 

Strangle all those sobs,

Dry up all those tears,

Leave not one trace of sadness

“I was never here”.

 

There was a lot going on. I had no choice: life kept moving, so I had to as well. I’m worried I might be depressing you all, but I know that I also worry too much (there’s a poem about it). I’ll only share one more with you. I wrote this just last year, when I was worrying about something:

Borders are

As borders go

Separating,

Existing.

 

Some borders are paper thin, hazy, fragile,

But hold within them

The power to destruct.

 

These borders are

Long

Thin

Lines.

 

Tread carefully.

 

But the border, the line, that

Scares me most,

Is the one I balance on when I act

By the sheer power of feeling

Empathy, love, worry.

 

Then I walk the border of

Making

Things

Worse.

A single toe out of line, and that power to destruct

Is free.

 

And on that supremely uplifting note, I will now stop the barrage of sadness, and share some facts of happiness:

  1. I now have a place to write regularly, and it’s full of positivity! I have self-discipline, and write regularly, and you are all lovely people, and leave me uplifting comments. I now can write of happiness, and not just sadness.
  2. I have a much better support system in place than I used to. My family is as great as they always have been, but I now also have a bunch of friends that really care about me.
  3. I have matured since I was 12, and though I still write poems of depression in epic proportions, I also hold on to some perspective. I have a good life, even with Fibromyalgia.
  4. My math test is over! I don’t know if you feel the same way I do, but in my book, this is definitely a fact of happiness. I was stressing out about it so much, but it went really well, so now I believe all my hard work was worth it and I am happy. Next one in three weeks.

 

I hope I have now lifted your spirits after having lowered them. Otherwise, I would feel guilty. There’s a poem about it.

Wishing you all a wonderful day and happy reading,

Yours truly,

Ella

 

Song Quote:

Welcome to the inner workings of my mind. –Hurricane, Ms Mr

 

IMG_2175

While giving my drawer a photo-shoot, I realized I was photographing one of my most prized possessions: my Song Quotes notebook. It is a beautiful little thing….

 

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A hundred points to anyone who can leave a comment below stating which books are on my shelf… (hint: there are fifteen in the picture). Let the games begin!

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