Brave.

 

It’s hard for me to write why I’m scared and what’s making me nervous. Clearly it’s all of it, but there’s something keeping me from using the words. In three days I’m moving out to a place I’ve never lived before to live with people I don’t know, and start a new job at a center where I know no one and will have to prove myself from scratch. It’s a lot, and my pain is through the roof. I’m barely sleeping and for the first time in awhile it feels like fibromyalgia is a dragon breathing fire once again.

I’ve been making promises to myself recently. Maybe I’ll use those words.

I promise to remember that it’s okay if:

• I cry a lot.
• I don’t conquer everything at once.
• I feel scared.
• I call home a lot.
• I ask for help with silly things.
• I cut myself some slack and not try as hard as I always do.
• I feel lost and small. No need to feel even worse for feeling those things.
• I don’t have fun right away. Things take time.

I promise to take good care of myself. To do so I need to make sure to:

• Stretch before bed every night. Seriously.
• Follow the annoying but wise “no-screens-after-nine-p.m.” rule.
• Eat well, which means cook.
• Keep up my exercise. Find a class or something… Yes! Become that young adult in a new place who joins groups to meet people.
• Call my people.
• Write a lot. It keeps me sane, it keeps me calm, and it’s beautiful to look back on. 
• Listen to music all the time. Have dance parties. Rock out to my jams when I’m feeling down. It always works, like true magic.
• Be nostalgic the appropriate amount. It’s par for the course. Draw strength from the experiences and memories.  

I promise not to forget that:

• I deserve my best shot at life.
• This whole adventure is a good thing. It’s what I wanted. Remember why you are where you are.
• I am creative, capable, and a total badass, so I can turn anything that’s thrown my way into a piece of cake (that’s non-processed, dairy-free and chocolate-free. Maybe I need another metaphor). 
• It might not be right away, but I will have fun! I will have so much fun. I can’t lose sight of that. I purposely created this year to have what I’ve been missing this past year – new people, independence and some fun.
• There are so many people rooting for me. They have faith in me and they know I’ll do well and succeed and live a good life. If they know it, I should know it too.

Also, Ella? Once everything settles down your pain will alleviate. You know that, so don’t freak out. Survive it like you survive everything else. Don’t lose sight of everything. Ready set go.

Time to be brave.

~~~

Ella
Song Quote:

I did my best to assure her but assurance isn’t easy to give. -Words, Passenger

 

As promised, a new collage! This will go on the wall of my new bedroom.

All of the pictures are from magazines, and I like to cut flowers out of different ads and glue them on for a pop of color.

“She believed she could, so she did”

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Goody Goody

Change is change and takes adjustment, but I think I’m getting the hang of it. Things are picking up, settling in, taking off. It just feels like everything has fallen into place. True to myself I know how to recognize when things are good, and right now, things are good. And I love the weather.

The pain is still here but I’m taking care of myself. The sadness is still here, but there’s satisfaction to combat it. The loneliness is still here, but it has less of a sting to it.

I feel happy again. I feel like I have more good moments than bad moments. I’m crying less. I’m doing more. I’m watching a lot of Gilmore Girls. I’m busy again. I’m seeing my friends more. Or rather, enjoying the time I spend with my friends more than before. I feel like I have what to say, I have what to share, and I have what to be proud of again. I’m interesting and complex and funny and lively. Again.

I wish I could sleep. I mean, it would be helpful, you know? But you can’t have everything. I like that even when it takes me hours to fall asleep, I don’t talk myself into a frenzy. I write stories in my mind like I used to when I was little.

I feel curiosity for the first time in a long time. Being out of school has reminded me that I love learning and I love knowledge, and it’s a joy that is precious. I like surveying the months since graduation in my mind and realizing I’m now out of the dip. I like my clothing and I like how I look. I like that I’m good at staying in touch with people. I like that I persevere. I like that my diary hasn’t been as depressing these past couple weeks.

I like that I’m starting a course soon where I’ll meet new people and make new friends. Winter romance? A possibility.

On that note,

Ella

Song Quote:

Little darling, the smiles returning to the faces. -Here Comes the Sun, The Beatles

At this point I refer you back to “An Ode to the Changing of the Clocks”, because it is once again how I feel and I’ve been pining to feel this way for months.

The Endless Ands

And what about those nights when I don’t want to get up the next morning? When giving up is the easier option, because really, who would love me like this anyway?

And as I write these words I wait for the fight to kick in, for the anger to strike me and tell me not to believe that. But I wait like I wait for health: hopelessly.

And what if I’m tired of waiting?

And as I contemplate the bed I am getting into, I wonder about the bed I will wake up to. Will it have been slept in? Will I have spent another open-eyed night wishing the sun would rise more quickly and yet not rise at all?

And I have two arms. One I wrap around my body, tightly, because there is no one next to me to do it. One I keep free to wipe tears. The pain is too much.

And the fear is crippling. When health is but a fantasy, the future is but a question mark.

And I want to be hopeful. Sometimes it feels like I am winning, because I have a voice in my mind that tells me that right now is not really all that bad. Manageable. Definitely not the worst I’ve had. Perspective. You know the sort.

But there’s always a tonight, and I don’t want to get up in the morning.

~~~

Ella

Song Quote:

I got locked inside a sadness, I got lost inside my head, couldn’t find a light to make me glow. -Holes, Layla

Describe the Pain

You ask me how it feels.

How it feels?

Describe the pain.

The pain?

That I can’t.

~~~

It is a thin, gray substance that coats my entire body. It is elastic – it clings to every fold, crevice, dip and bulge. It is a glove, not a mitten, covering each of my fingers individually. It is a film around my eyeballs. It’s a thick platform beneath the soles of my feet. It is weaved within the hair that I chopped off. It is my outer layer of skin.

It is like a rubber band. If I focus, really hard, I can push it out – away from me – enough to let air in. If I push it really far, it lets hope in. But you must understand what being rubber means: it will always snap back. The minute you forget to focus on the light and hope, it smacks back, vacuuming itself to your body.

You can see through it, in the way that others don’t see it at all. You can see what you’re missing, but there isn’t a thing you can do about it. It is like walking with a heavy cloud above your head every day, except the cloud is not above you but within you.

It is as strong as I am. The harder I fight to be rid of it, the harder it fights to stay with me. Because it is me. It’s my brain, it’s my wiring, and it’s my nerves. It has my nerve.

~~~

Ella

Song Quote:

We’re tethered to the story we must tell. -Turning Page, Sleeping At Last

A Conversation

Wake up, Ella. You’re letting life pass you by. Remember when you said you wouldn’t do that? You wouldn’t lose sight of the bigger picture?

Gone is the confidence. Gone is the positivity. Gone is the girl that believes she can weather anything with a good attitude. 

Remember when you wrote about the little things? You should really figure out how to find those again. 

Instead is a common foe: pain. 

I know it’s hard, sweetie. But you used to see magic everywhere… I bet you there’s still magic.

Pain is led on a high horse to a royal throne, where he presides with a mighty hand and a nasty manner. 

Can you remember the last time you were truly happy?

His land is Headache Kingdom, and his name: Sir Hurts-A-Lot.

You know what, don’t think about past happiness. Think about the future. How are you going to find a way to be happy?

Live obediently under his rule or risk his wrath.

~~~

Ella

Song Quote:

For diamonds do appear to be just like broken glass to me. -Northern Downpour, Panic At The Disco

Actual Truth

Dear Abandoned Blog,

It’s not that I don’t love you anymore. Sometimes I just feel I’ve said all there is to say. The picture of my life has not yet evolved; I am still sick and I am still sick of it (more and more each day). Countless times I have moved beyond the moments of thinking I can’t take it anymore.

This summer marks four years since my headaches started and three years since diagnosis. What have I learned in all this time? Many things, that’s for sure, but none that make me feel like it’s been worth it.

It’s hard to be in pain all the time. As I once wrote, “My friends wonder how I do it, and I wonder why.” I often find myself in this numb state, where my anger is equal to my pain level and as the two compete I turn into a sort of zombie. I care so much that I just can’t care anymore, because caring doesn’t get me anywhere.

A problem shared is a problem cut in two, but I can’t share this pain because it is mine alone to bear. I’m by myself with it, feeling it day in and day out. I barely sleep anymore. I spend hours every night staring at the ceiling, blinking away tears, because the pain is so bad and there’s nothing I can do but survive it. All I want is for someone to hold me and make the pain go away.

Dear blog of mine, please don’t feel hurt. As you can see, I’ve been dealing with a lot. I’m very unhappy.

Since I last wrote to you, I graduated. I was in charge of graduation, and for three months I put my heart and soul into planning a beautiful evening. It took a lot out of me. I didn’t cry until after I got my diploma and walked offstage. It was a moment of relief, realizing it all went off without a hitch and I had no more responsibilities, but also a moment of great, deep sadness. I’m never going to get those years back.

I’ve been sick for so long, and the past four months have pretty much been the worst I’ve ever had physically. I told myself it was the pressure. It was the stress of graduation work, tests, social events, etc. But it’s been a month since I graduated, and I’m not doing very well. I’m in a pain spiral and it’s dreadful.

Please understand, dear blog, that it is not about you. It’s about me.

I love you,

Ella

Song Quote:

The tears come streaming down your face when you lose something you can’t replace. –Fix You, Coldplay

The Hospital Anecdote

I never wanted to end up in the hospital. I never wanted to get sick in the first place.

I’m so exhausted. Yesterday was a nightmare, and I wish I could erase it from my memory.

But I keep thinking of two things: the song that played in my head while I listened to other people moan and cry out in pain, and the hair cut I’ve been dreaming of for years.

“All I need’s a whisper in a world that only shouts.” Poignant as it is, I’ve related to it since I heard it for the very first time. But after everything I went through yesterday, it was the soundtrack and is still at the forefront of my mind. I don’t deserve what has happened to me. I am a good person, and this is awful stuff. The pain I suffer through is not fair, and yesterday was a bad dream that really happened.

I’m getting a pixie cut. This is so unrelated, but lying in bed today, all day, I keep thinking about it. How free I’ll feel, how cute it’ll look and how I can’t wait to release the weight of all of this long hair. I never realized what a burden it was until I decided to cut it off.

This haircut is now linked, hand in hand, with graduation. I naturally create things to look forward when I’m staring at a bleak stretch of time. I’m about to finish high school and I have no clue what my life will look like. The fear threatens to cripple me every day. Because here, look what happened! I have three weeks left to the year and it was so important to me to feel like I’m not missing out on anything, so I pushed myself beyond my limit and yesterday happened.

Yesterday.

Isn’t it fun when you end up in the hospital? When the dramatics went down in school and they carried you through the building on a gurney to the ambulance?

My own voice is echoing in my mind. “Why are you being so mean?” I tried to yell at the paramedics. They were hurting me, but I could barely talk. I don’t know if I screamed it or not.

Isn’t it funny that I just turned eighteen? At eighteen and three days I wasn’t allowed to go to the children’s hospital and had to go through the regular emergency room. I spent seven hours hearing awful sounds and seeing awful sights. All I need is a whisper.

From the worse pain to the shaking hands, from the tightening sensations to the embarrassment, from the worry and fear to the panic. From the mob of spectators to the scary paramedics, from the rough yanking and dragging to the collapsing, from the stairs to the chair and the chair to the gurney. From the sirens and the movement to the bed-to-bed, from the ugly curtains and needles and sleepy eyes to the waiting and waiting and waiting. The sounds of suffering, the yelp of the in pain. Curtains don’t block sound. The man who yelled that the nurses don’t care if his wife dies. The man was removed by security. I cried and cried – the woman was alone now. I want to go home. The world only shouts.

Erase. Erase. Erase. Delete. Backspace.

Now I should think of a way to look at this differently. I shouldn’t be angry at the world; I should appreciate what didn’t go wrong.

My friends were amazing. They acted quickly, and well. They love me. It upsets me that they saw me like that. They love me. My family loves me. Yesterday proved how beautiful my support system is. I have people, and I am so grateful for this.

What my body did to me yesterday was a reminder that I’m not superwoman. I can’t do it all. It might not be fair, and it might upset me very much, but I just can’t do everything I want to. I need to take care of myself, slow down, be more careful and go back to living life in small doses. If I could choose a super power, it would be healing. To be able to look at someone who is suffering and heal them. I saw so much pain yesterday.

These last few tests are going to be a struggle, but I will manage them and I will graduate. The next few days will be spent in bed, but after that I will pick myself up. I will get a pixie cut and then I will feel free and adult and optimistic about my future. It will mark this transition in my life, and it will be a sign that I can control what happens to me and how I deal with it all.

Ella.

Song Quote:

Well it’s hard to find a reason, when all you have is doubts, Hard to see inside yourself when you can’t see your way out, Hard to find an answer when the questions won’t come out. Everyone’s filling me up with noise; I don’t know what they’re talking about. You see all I need’s a whisper, in a world that only shouts. –Whispers, Passenger

Change My World

There’s a lot that I don’t know. I can’t even write a complete list for you because I wouldn’t know what to put on it. But throughout my entire life there have been a few things that I’ve always known, and one of them is writing. I will always have writing.

In the past half a year I’ve written more than I’ve ever written before (even though this blog doesn’t necessarily showcase it. Sorry about that), and it’s been so good for me. I have another world, separate from the real one, which lives inside of me. Worlds are created all the time, practically every time I read a book, watch a movie or binge watch a TV show. The difference is that this world is something I invented, the people living in it are characters I dreamt up, and the meaning of it is the culmination of many, many, inner conversations and turmoil.

The cool thing about my world is that I have writing. You see, I’m in the process of turning this inner world into a world accessible to other people by writing it. I’ve done this for nearly two years with my thoughts and feelings on this blog (this is where we all freak out and scream over the fact that I’ve been writing on here for two years. I mean, sheesh, I’ve had my driver’s license for a year! Remember that saga? I remember).

I googled “freak out and scream” and of all the amusing photos, this one won

This is different though. This isn’t me sharing the thoughts I have on my life and my body and my situation. This is me sharing a story. A story I’m building, crafting, imagining, and loving. I really love it.

It’s cool to think that maybe someday, you will all read my book. Like, in an actual physical copy, with my name embossed on the front and the blurb about the author including this very blog. You’re all going to be famous!

I’ve had ideas for novels before but they were never real. This one is real. This one is serious. This one is actually happening.

On the list of things that I don’t know goes my plans for next year. I have __ months of high school left (I can’t bring myself to count). I don’t know what I’ll be doing, because stinking fibro cancels out all of my options. But I’ll always have writing. Who knows, maybe this is fate stepping in and making sure I won’t be able to move on to the next natural step so that I can sit down and write this book.

Will it change the world? Probably not.

Will it change mine? Probably.

Yours,

Ella

Song Quote:

I put my faith in me. –Long Shot, Newton Faulkner

I’m Going Home

 

Not my window, but a dreamy window indeed

 

I can totally do this.

The past few days have been filled with pain and the past few nights have been filled with consciousness. I am tired and tired of studying. I am sick and suffering, but I can do this.

Two tests left. My window is open to let the cold, crisp air in and onto my face, and every now and then I remember to breathe. I have a playlist of Coldplay, Maroon 5 and Beyoncé to keep me from getting too bored of my material, and a yellow highlighter that matches my dried mango (god’s gift to man).

A classic study set-up.

Not only am I motivated and uplifted by the light I can glimpse at the end of the tunnel, but I now have something to look forward to: I’m going home. I moved away from my hometown when I was 7, and in many ways where I live now is a larger part of my identity. It’s where my family is, where most of my friends are, my school, and my past ten years of life. This culture now feels as much an inseparable part of my identity as the culture of my early childhood.

But still, the thought of going back for a visit makes the words “I’m going home!” shout in my mind, bang around and jump up and down (primarily as I try to study). For once I have something to look forward to, and by golly, is it uplifting.

I just feel like I can do this, I can make it through these tests and then go home. The first time I went back to visit was many years after we moved away, and at the sight of my neighborhood I began to cry in the back of the cab. Those tears were because I missed it all and I wished we’d never moved. The tears I’m sure will come this time will not be the same. I’m no longer a 7-year-old girl. In a few months time I will turn 18 and I will need to accept that the fibromyalgia will become a part of my adult life too.

This time I will cry because I really need a break from the reality of my life that is so often sad and frustrating.

This time I will cry tears of joy, because despite it all I love the person I have become and I know I would not be the same if we had never moved away.

This time I will cry, and then leave the tears aside and focus on being where I am. The Dalai Lama said that there are only two days that do not exist: yesterday and tomorrow. In my life, my yesterdays always carry over to my todays (in the form of a headache) and I can’t help but worry about all of my tomorrows.

This time I will cry.

Yours,

Ella

 

Song Quote:

Millions of miles from home in the swirling, swimming on, when I’m rolling with the thunder, but bleed from thorns, leave a light, leave a light on. –Midnight, Coldplay

 

Stay tuned for part 2! I plan to write all about my trip.

Part 1: I’m Going Home

Part 2: I’m Home!

A Letter to My Enemy

Dear Fibromyalgia,

I’d like to talk doogree with you.

           Doogree- straightforwardly, with no beating around the bush

I am no longer naïve enough to believe that despite your presence I can make my life the way I’d like it to be. I am old enough now to realize that I can never make peace with you. I will never be my truest self until I am rid of you.

Did you hear that? I will not be free until I am free of you.

You are constricting me. You are suffocating me. You are the enemy I fear, the pain I dread, and the negative I cannot escape. You. Suck.

My friends wonder how I do it, how I live with you in my life. I wonder why.

I just want to make sure you are not mistaken on this: we are not friends. It has been years and I tolerate you, but that does not mean I do not hate you with every fiber of my being.

See what I did there?

There is not much more to say.

The next time I write to you, I hope it will be a goodbye.

Ella

Song Quote:

Light up, light up, as if you have a choice. –Run, Snow Patrol