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

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

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)

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

 

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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!

The Question Is Scars

Image

The question is scars, imprints, and things that last. Sure, life moves on, and our past is behind us, but there is no escape from what has happened to us. Experiences will live with us forever, because I believe e-v-e-r-y-thing makes an impact, no matter the size, on who we become. Which is why no one event is the sole cause of something. There were many things that led to it.

I’ve been thinking about this because of the possibility that I might get better. I’m sick, and as the title will tell you, sick of it. But I might get better, so I try to focus on that. Whenever I think of my future, when I imagine my grown-up self, when I dream up a family, I’m always healthy. I never let myself think about what life would be like if I don’t get better very soon. I don’t let myself think of when I finish high school, how I’ll never be able to date if I’m sick, or how I’ll dance at my wedding with this body of mine, or how I won’t be able to sit on the floor with my kids, or how I won’t be able to show them how to do cartwheels, or….

Whoops.

But really, even if I do get better (/when), will this disease ever really leave me? What scars have my life cut into my heart, that will debilitate me for eternity? Wow, dramatic sentence. Every phase of my life has left me with scars, and has helped shape who I am. But where is the balance, between the scars shaping us, and our personalities shaping us? And really, is there that much of a difference?

I don’t think so. I believe that our scars are what make us who we are. But the same event, happening to two different people, will cause different scars, and ultimately, a different outcome.

I was bullied, starting from age seven, and because of that (and many other things), I take special care to never hurt anyone’s feelings (because Anyone has an almighty power and if I insult him he’ll kill me). I look out for those who have trouble doing it themselves, and most importantly, I’ve learnt how to take care of myself so I don’t get hurt again. But others who have been in my position have turned to bullying others in return. What does that mean? I don’t know.

That’s why I’ve been wondering, and why I’m writing it down. I feel like I’ve thought this through about 90% of the way, and those ten percent are what is really important and what I haven’t gotten to yet. Writing things down usually helps me figure everything out, but not this time, I guess.

Maybe it just needs more time. It’s not like my scars are ever going to leave me. They stay.

From now on, don’t abandon your scars. The would never abandon you.

Yours truly,

Ella

Song quote:

You’re still written in the scars on my heart. -Just Give Me A Reason, Pink ft. Nate Ruess

The Little Things

balloons against sunset

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

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

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

FIN metaphor.

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

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

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

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

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

Huzzah for the little things.

Yours truly,

Ella

Song Quote:

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

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

Ready For a Zombie Apocalypse

You heard me. I’m ready. I have a bunch of vegan and vegetarian friends, there is food hidden all around my room, and my sisters recently counted how many bathtubs and sinks we have and came to the same conclusion I have: we’re ready.

 

Which is not to say we believe in such things. We’re just ready. Better safe than sorry.

 

Okay, obviously I’m kidding. Although everything I have said is true. The friends, the food, the bathtubs- all real. I’m writing this because I only just realized that zombie apocalypses have been a sub-theme of my past few days. Probably because I have been thinking about our worst fears.

 

Are they destined to come true? Because two major ones of mine have.

 

One thing I have been afraid of ever since my sister got sick has been getting Fibromyalgia. Check that off the list people. I was diagnosed with it this summer.

 

Another has been cancer. Put half a check on the list. The growth was around before I was diagnosed with Fibro, but the results of the second biopsy came after. Half a check because it seems like now everything is fine, after the surgery to remove it.

 

My point is, if two core fears of mine have come true in the past nine months, will all of them come true? I watched a documentary portraying a woman who lived her entire life in fear that a man with a knife would break into her house, and then one day it happened. So thinking beyond the fact that I have to stop watching weird documentaries (there are awesome ones about gypsies too), maybe our fears are meant to warn us about what’s going to happen?

If that’s true, I’m in for the long haul.

 

I try not to live my life in fear of anything. When I break that personal policy, it’s to contemplate how awful it would be to lose another family member. But night after night, this idea about fears keeps haunting me: are they going to come true?

 

I’ve had enough suffering in my life, and I’m nowhere near even being an adult. I like to think that maybe I’m getting my suffering over with now, so that when I’m older, I can be more free. If not that positive outlook, then maybe there is just so much suffering planned for my life, that I was done the favor of having it spread out over my entire existence so that it never becomes too much?

 

Deep thoughts such as these are what keeps me up at night. These, and worrying that my non-existent pink piggy bank will be broken into in sleep, worrying that the sun will fall (what would happen…), worrying that I will get a stain on the rug of the family I babysit for (that rug if freakin’ pristine), and worrying that my apple might get depressed. I’m versatile.

I’m going to end this late night rant with one thought- if fears aren’t meant to be foreshadowing our futures, do they do us more bad than good?

Dream happy dreams,

Ella

 

P.s. Starting to see the source of the ‘tired’ in my name?

Song quote:

But it’s harder than you think telling dreams from one another. – Daniel In The Den, Bastille

thinking by Luis Alves

I Am Effervescent

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Every now and then, despite everything that is going on and all of the hardships, I have these moments where my thinking becomes big. By big, I mean I think beyond whatever is going on in that moment. I think about how incredible society is, even the fact that it exists. I think about what the point of life is, why we’re here. I think about the little things of life that I love more than anything. But most of all, during my big thoughts moments, I think about the positive of my world.

 

I have an internal list of the nicest things people have said about/to me. My mother told me the other day that “to know you is to love you”. A family friend told my mom that when she thinks of me she “thinks effervescent”. My father tells me that “your kids are going to be so fortunate to have you as a mother”. All of these things, that take people seconds to say, stick with me, forever. For the better and for the worse. But with my mood right now, it’s for the better.  I love it when I feel like this.

 

My friend has this huge jar sitting on her desk. Every day, she writes down something nice that happened to her and puts it in the jar. As opposed to me, where every night, as I try to fall asleep, every bad aspect of my day comes to haunt me.

 

I feel like every person is born half blind. We have to spend our entire lives training ourselves to use the other half available to us. We need to learn how to see the little things that are so incredible, I can’t even write them down. You’ll have to feel them for yourself. When you do, suddenly everything around you will have this sort of… buffer. This buffer lets me be in a good mood even though I’m having a hard day physically. This buffer is letting me write even though I want to lie in bed. This buffer is… the other half.

 

Moods go up and down, but buffers don’t. Find yours.

 

Good luck,

Ella

 

Song quote: (You’ll get two today! The words always meld together for me, and these two compete each other)

 

“It’s harder than you think, to delay this sadness that creeps up my spine, and haunts me through the night”- These Streets, Paolo Nutini

 

“How am I gonna be an optimist about this?”- Pompeii, Bastille

What don’t you understand?

Fibromyalgia is an invisible illness, meaning people don’t understand. At least that’s my definition for it. You look great- thanks. You did well on your test- thanks. You’re feeling better, right? – no.

When I close my eyes, sometimes I can pretend that I’m completely okay. It’s nice. 

 

But my eyes are usually open. You see, I understand that people look at me and see a normal girl. They see my test scores (which I work my butt off for) and see a normal girl. They watch me talk to teachers and other students, and see (you guessed it) a normal girl. This wouldn’t be a problem, because most girls want to be/seem normal. But I’m not. I will always have to sit out on many a joyful occasion because my health issues seem to prohibit fun. I will always have to plan out my days in advance, because dare I push myself one tiny step too far, I will have to pay for it with intense pain and exhaustion. I will always have to be the one who can’t participate, the one who can’t help, the one who’s sick.

 

You see, to me, all of those things have become so obvious. Of course, that’s how it is when you have Fibromyalgia. But it’s an invisible illness, and people don’t see it. And what they don’t see, they don’t understand.

 

In some ways, it’s nice that people don’t know the moment they meet me that I’m sick. I get to escape, or maybe avoid the subject when I meet someone new. But in many ways, it really sucks. It makes it all the more awkward to have to explain.

 

For instance….

I’m talking to a bunch of people, and they realize there’s a trampoline nearby. Let’s go jump, they say! Off everyone rushes, towards the fun galore of jumping. I sit down on a chair. Someone asks me why I’m not joining, and I, innocently assuming time and time again that I can just explain, tell them that I have some health issues, Fibromyalgia to be exact, and jumping just doesn’t do it for me anymore.

 

Then the whole scene ensues, of them pretending to care and understand, asking me to explain what it is, what it means, how I’m managing. I come out of every scene, back to my wardrobe change, feeling like maybe this time someone really did understand. But there’s always that twinge.

 

That night, I have a nightmare that involves trampolines. A week later, I see that person, the one who cared and understood, and they don’t remember who I am. I tell them, we talked when everyone was on the trampoline. They now recognize me. They ask me, so how’s that thing you have? It was the flu, right? So I just give up, and say that yes, indeed, it was the flu. They tell me they are glad to see I’m feeling better. I thank them. And the twinge turns to full blown feelings of… feelings of…. I’m not sure I can describe them. But they suck.

 

What don’t you understand, people? Health issues = physical implications = emotional and mental implications = difficulty leading a regular life = it would nice to have someone care.

 

But you know what? Maybe it’s not even that. There are some people in my life, that I know care about me. Maybe they just don’t know how to show it. And I know I get angry sometimes, when people do the wrong thing. But how can I not? And I’m trying, really trying, to keep those angry spouts in check. But when a specific few things are said to me, I have a really hard time with that. These are those few:

 

1. If only you pray harder…

My response: Prayers can’t fix everything. I’m working hard to fix this, and I have to put some faith in that as well.

2. Oh my god, you’re so lucky!! You get to stay in bed and don’t have to go to gym!

My response: Wanna trade?

3. But you just look so good!!

My response: Thanks! But, um… I still feel exactly the same.

4. It’s all in your head.

My response: I have something I can put in your head. Like this axe, perhaps.

5. Your illness is just caused by stress.

My response: Stop being an imbecile and do your research! No it’s not!

Okay, so maybe these are a little extreme.

Maybe this entire post is a little extreme. I understand why people don’t understand: it’s an invisible illness. I get it. I know that people are trying to show me they care. I know that people don’t know what to say, and are just trying to make me happy. I know.

 

I just wish, that sometimes, they’ll also get it right. I dream about it all the time. About someone coming, who just really understands me, and what I’m going through. I know that that someone doesn’t exist. I know that every person in this world feels misunderstood, and that no one will ever know what it’s like to be me, because I’m the only one that is.

 

But a girl can dream, right?

 

And that’s what the next post will be about.

Stay tuned.

Be kind to one another, and take more notice of what people around you are going through. Then remember what they tell you. You don’t know what a difference it could make.

 

Yours truly,

Ella

 

Feel free to comment below, and ask any questions you have. I may have come off a little strong today, but I assure you, I don’t bite (or swing axes).

 

Song quote: “If you close your eyes, does it almost feel like nothing’s changed at all?” -Pompeii, Bastille

 

Sick and Sick of It

I miss the old me. I miss the me who could stand for more than three minutes, slice her own food, dance for three hours straight, and who could laugh without feeling pain. I’m letting myself say this: I really miss that girl.

 

Sadly, she’s no longer with us.

 

This is the new me: I have fibromyalgia. It has been defining me without my permission.

 

Fibromyalgia has become more than just my disease; it is my way of life. No matter where I turn, it stops me. I have to take it into consideration, because if I don’t, there are consequences. It trumps everything else in my life. I once described it to my friend as “a scared infant with serious abandonment issues”. If for even one second I manage to enjoy myself and forget it’s presence, it makes sure that I know it’s still there.

 

On August 8th, 2012, I was diagnosed with fibromyalgia. I sat in a waiting room next to a boy with Cerebral Palsy, a smiling little girl whose mother was crying the entire time, and my mother (while my dad worked out insurance details). It was the first time the truth looked me in the face with a smug smirk. It was the first time I allowed myself to wonder what my life would look like when I walked out of the hospital. It was the first time I realized that I would never be a normal girl again.

 

Now I know that when something bad happens to a person, all they want is to go back to where they were before it happened. I think that with hardships, we tend to warp whatever was before into an amazing place we want more than anything. But was it really always that great? Ever since that fateful Wednesday, all I’ve wanted is to go back to the time before my fate was sealed. But today… today I have really felt, for the first time, that there’s no point going back. If I really wanted to go back to a time when I was happy, I would have to go back to age 7, before my family moved to other side of the world and life itself became one big hardship. Looking back, pretty much since then it’s been one thing after another… it just seems like a lot of bad stuff has been coming my way.

 

So considering that, do I really still long for what things were like before I was diagnosed? It wasn’t really all that great. Neither is now. All I can really hope for is that my future is better. I have learned not to tempt fate, never to say “from rock bottom you can only go up”, because I have discovered there are things more bottom than rocks. Like mud. And snakes. And bugs. I really don’t like bugs.

 

I can’t change my past. My attempts to change the present aren’t proving fruitful. And what do I know about my future? What if I find out that for the rest of my life I will be longing for what I have right now? I’m laughing at that thought, in the dead hollow that seems to be my inside, because why would I ever yearn for this nightmare? But who knows. I just hope I don’t.

It’s hard to express my hopes for a brighter future, because when I say them out loud to another person, the crippling thought of “what if I’m still sick? What if by that point, I can’t get out of bed?” comes back to me and I shut up.

 

But to you, I will express these. Here, on this blog, I will write down my thoughts and my hopes for the future. I love writing, and everyone has told me that I have a future in it too. I have a lot of things to say, and I have written a lot of them down. And now I have a place to post them.

If you have any questions for me, feel free to ask them. If you have words of encouragement, I would love to hear them. If you have judgments to pass, remember that if you don’t have anything nice to say, you shouldn’t say anything at all. I don’t need any more bullies.

Hope to here from you soon,

Be kind,

Ella

Song that’s stuck in my head and magically goes really well with what I’ve written:

“Believe I’ve got high hopes… But the world keeps spinning around.” ~High Hopes, Kodaline