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.

 

 

Try To Keep Up

 

photo

My week, summed up very well.

Hey, wait up! Time, where are you? This isn’t fun, I don’t like hide-and-seek. Or tag. Or whatever this is in game form. There’s so much going on, I just have to keep up and keep my head from rolling onto the floor and out the door (and under a bush, until I turn into mush).

I’ll start from the beginning, shall I?

My cousins are visiting. It’s great to see them, it truly is, it’s just time consuming. Over the weekend we went to our second cousins where I played pool for the first time (!) and other fun games fit for our old age. I loved it, though my head hurt me a ton, and I didn’t have time to study for my tests. And…. I was gonna say something…. I swear I knew what I wanted to say…. Shoot. It’s gone. I’m trying to think back to what happened at the beginning of the week. It’s been erased from my memory, apparently.

Oh! Now I remember. We started the day (at school) with triple biology (always a blast), and then we found out about a nasty rumor.  For those of you that have been following diligently, you know that I have already started my driving process (see Colloquial Miss if you want to catch up on that lovely experience). Well, after getting your green slip/form (where they check your eyesight and take the picture for your license), you need to get it signed by your doctor before you can go take your theory test. The theory test is basically made up of thirty multiple choice questions that test your knowledge of the road signs, laws, right of way, and all of those de facto important things. Up until now, you would study for it independently then arrive at the government ministry and take your test. You’re allowed to get up to four questions wrong (meaning if four are wrong, you’ve passed).

Okay, there’s your background information. What we found out was that as of the first of January, they’re changing the whole system. Or in other words, we all need to take our theory tests by January first. A bunch of us, including myself (us being my friends and schoolmates), were already in the process of studying for the theory test. Using either books or online websites, you spend some time learning what each thing means and what the rules are, then you test yourself over and over. Time consuming (keep track of how many times I need to use that phrase to describe my week and I’ll give you a sticker), but not too hard. Out of four chapters, I had finished the first.

We all kind of stressed out, until my good friend J had the idea to call the higher ups and ask them if the rumor is true before we all vomit up anxiety on our textbooks. I apologize for crudeness. She did, and they told her that they don’t know anything, and when prompted for information on who does, they replied that they do. But they “won’t know anything until two days before the system changes”. Essentially, they can’t confirm the rumors but the system will be changing. That was bad thing number one.

All day long, even before the rumor surfaced, I had a head splitting headache. Is that a thing? Can I say that? Too late. It was horrible. Sometimes it’s manageable, but that day I just put my head down in class and tried to block the world out. It hurt so much, I don’t know how to describe it (oh wait, I kind of did. Check out Shining, Elegant, Weightless White). Usually, no matter how bad I feel, I can put up a pretty good front, to the point where people don’t know I’m sick until I tell them. But this time my teachers were asking if I was okay, and I wanted to cry. We also found out that our teachers had organized to take us to go see snow the following day as a fun stress-reliever (it doesn’t snow in our area), and I knew that I couldn’t go because busses make me really sick.

I got home, and studied through the pain because I had no other choice, going back and forth between theory and a year-and-a-half’s worth of biology material. Later in the day I went to physical therapy, where my physical therapist/study buddy and I went over some of my biology terms, and then we talked about his cute kids for the remainder of the time.  Then I got home, and guess what I did? I studied! Shocker!

Wow I just realized I can’t tell you about everything that has happened because it would take me until next week to write all of that, and I don’t have that kind of time. Okay, fast-forward:

1)   My sister collapsed and I had to take care of her until my parents could get home and figure out whether she needed to be taken to the emergency room or not (she was in the end, and then sent home). That’s what I did on the day my friends went to play in the snow.

2)   The biology test went all right for me though it was pretty hard, but it went badly for most of my friends, which was very upsetting.

3)   I had to go to the doctor to get my form signed, and that took a long time that should have been spent studying for theory. The whole process was time consuming.

4)   I was told I need to go on another upsetting diet (my friend D said I should call it a “regime”), this time dairy-free, gluten-free and no processed foods. If anyone feels it’s important, I can explain why at some point. Mainly, it sucks and I hate being sick. It’s so time consuming having to prepare food every time I want to eat something.

5)   My parents bought me a new phone, and I chipped in for about a third of the cost, but it doesn’t work. I went to six stores to try to set it up, then my dad went to five stores to try to set up (time consuming), and he finally found someone who knows how to do it for the added cost of over 100 dollars… Meanwhile, all of the back and forth has messed up my old phone (a cute little red Sony Ericson), so it’s not really working. Hopefully next week my phone will be set, and then I’ll be able to post from my phone! Ah! Though I probably won’t, let’s be realistic here. No mobile version is better than the real thing.

6)   That very bad headache? Still here. It won’t go away, I think it’s going to drive me insane if it doesn’t let up soon.

7)   Hey my lucky number! Ooh, which reminds me, I have to tell you about the theory test itself! Man this post is really long.

Anyway, today J and I got a ride with her dad and went to take our test. First off, the office was in a deserted building, on the second floor, on a landing outside the building, past a bunch of workshops where men with masks on and working heavy machinery turned to stare at us as we walked past. Briskly. Then we got to office, opened the door and a guard jumped up and told us to put our things on the desk while he ran his metal detector over us and stuffed our things into lockers. A pleasant welcome if I’ve ever seen one. Then we were told to sit, and after being sent back to put more of our things into our lockers (including my scarf, because it’s all the rage to hide answers in them nowadays), they finally called my name. J wished me luck, and I went up to the desk. They had me sign some forms, then told me to look at the camera. I suddenly got worried, because I did not want my license picture to be taken then, seeing as I already worked so hard to get a nice one of my green slip. I asked the lady what the picture was for, and said that I had already taken mine, and she went, “You’re pretty, what do you care?” *clears throat* I insisted, and then she told me it was for “identification purposes”. Fine. I smiled. By the way, I saw the picture later and it was not pretty.

Then she sent me into the room, where I was lead to cubicle number 7 (hence the memory trigger) and shown how to work the test. It’s on the computer; I was basically told how to use a mouse to press the “next” and “finish” buttons. J was seated next to me at cubicle 8. I took my time, answered everything very carefully, then went back and counted up how many I thought might be wrong. I got to three, so I decided to go for it and pressed the finish button. I came out, waited with J on the waiting chairs (that’s their official name) and then the same lady who thinks I’m pretty came up with both of our forms and went, “One of you passed, one of you failed”. Such a kind, tactful lady. Now, J and I had discussed what might happen if we went together, and we both came to the conclusion that one of was going to pass and the other one wasn’t, because it’s just been that kind of week. It was so bad that our friend D sent us both a text saying (after I updated them about the new regime), that she doesn’t know what to say but she thinks “we should commune and create a cry session for one of the worst weeks in 2013”.  J said, “Spot on”, and I declared that “I concur. It’s a date.” J said she would laugh if she fails, I warned her and her dad that I would cry.

So when she said that to J and I, we looked at each other and turned to our forms, and she started laughing before I had time to process the little word on my form that let me know that I passed. The second we made eye contact we started laughing hysterically because we were right, and then my favorite lady asked us to leave because we were being disruptive. We grabbed out things and headed for the door, where the guard stopped us and gave us his advice on when to come again and what website to use to study. He was actually sweet in the end, surprisingly. We quickly walked into the building from the landing and left.

I’m glad we’re such good friends that the situation wasn’t awkward. I was sad for her, she was happy for me, and mainly we were both exhausted, tired and angry about what a bad week it’s been. Luckily everyone is going there to take the test in the next few days, so she has plenty of opportunities to go again with someone, and then I’m sure she’ll pass because she did eleven practice tests the night before and passed all of them, so it was really just a fluke that she didn’t pass the real one. And I know she’s reading this, and laughing. Go get some food and stop doing more practice tests.

I was so tired last night that when I wrote my checklist for this morning, this is what came out:

–       Green slip

–       Wallot

–       Phone + id

–       Wallet

Yeah, it was that bad. I showed it to my dad this morning and he laughed at me. Understandably, I suppose. Ooh, and I scheduled my first driving lesson for next week!

Wow, I’m at two thousand words. Maybe it’s time to stop talking. Maybe I should edit some of this stuff out. But we all know I won’t.

Yours truly,

Ella

Song Quote:

We have paved these streets with moments of defeat. –These Streets, Bastille

 

P.s. Who got the meatball reference?

 

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)

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.

The Humorous Side

For quite a while now, I’ve been trying to find something humorous in every situation I’m in. It comes pretty naturally to me, in most situations at least. For example, I always laugh when doctors want to listen to me breathe, or feel my stomach. Something about those two requests that they utter makes me laugh, and I try to contain it, because it’s a little weird, but now I’m embracing it.

I’ve had an interesting couple of days. If you’ve read my previous post, you’ll know that last week was interesting too, and it seems to be becoming a theme. I’m embracing that too. Sort of.

I hate math. That said, I take it super seriously in school. My teacher has this schtick where he’s convinced that we won’t be able to finish all the material we need for the exam at the end of the year on time. Therefore, he wants us to come in on our day off school to study for four hours (that’s 240 minutes) in a row, so that we can be ready for the exam. Now obviously this is very complicated and upsetting for us because we have a day off for a reason and we don’t want to spend it doing math. We’ll get back to this later.

I was doing my homework the other day, and there was this question that I couldn’t get, so I went to my sister and asked for help (she’s studying computer engineering). She (and her friend, who happened to be there) figured it out, then taught me a certain technique we haven’t learnt yet, but that the question seemed to require. After that, I called my teacher and told him about it, but he was adamant that it could work the way he had taught us.

Okay.

In our next class, it turns out that every single student couldn’t answer that question, so he starts doing it on the board. Then he stops… falters…. “I’ll get back to you on that one.”

Okay.

In class today, he “got back to it”. He said that it’s a very complicated question, we don’t need to know how to answer it, and that it is really only meant to be done with a certain technique. The very specific technique that my sister taught me. I was right. Just saying. (Correction: my sister was right. Credit where it’s due).

Then, he led the conversation to his favorite topic (this is the aforementioned ‘later’)- when is the next time we’re going to come in for our dose of torture by complete boredom? I had said all I had to say on the matter, which is that I don’t think we need these extra lessons and I don’t like them, but I’m keeping my schedule free so I can come whenever it works out for everyone to show up. Being completely sure that everyone knows where I stand, I just kept working on the question that was on the board and trying to tune everyone out. Like that ever works. Want a play by play of everything that was said? Okay.

Actually no, it would probably be very tedious to read. If I nickname my teacher Ree, I’ll just give you a general overview (and yes, I’ve now nicknamed the math teachers Ree and Ran):

-Ree told us that usually, in every school, in our entire country, in the entire world (his words), students have to come in over spring break to study math for the exams, but because we tend to travel he can’t rely on that, therefore we really need to figure out dates for when we can come in on our day off. He wants at least twice a month.

-Ree thinks we’re being childish, and need to “show some maturity” and figure it out already. By next lesson he wants a sheet with all of the dates.

-Ree: “You’re going to have to pass up on social events and family gatherings. This is important, guys. Again, show some maturity. Next time your parents offer to take you travelling somewhere in the world, you’re just going to say no because this is important.”

-Ree is fed up with us. He declares that if we can’t tell him right away that we’re willing to give up our lives for math (he’s so dramatic), he can no longer teach us. He can’t work this way. He’s going to go to the principal, and the other math teacher Ran, because it just won’t work this way.

I don’t have much to add; this sums itself up. Now comes the part where I tie in what I talked about in my opening paragraph. Humor: there is a humorous side of this. I am sure of it. I’ll let you know if I find it.

No, I’m kidding. I found it humorous while it was happening. How can you not when a grown man is being so overly dramatic about something you know is dumb? My friend mentioned later that she volunteers on her day off, and I agree with what she said: points in heaven are way more important than points on a math test. At least us students have our priorities straight.

After Ree made it very clear to us that we are the ones that have to come up with a solution, I started trying to say this and a few others chimed in: okay, we will, now can you please teach us some math? Now remember I had solved the question while everyone was arguing, so when Ree turned to the board and said “somebody do these calculations”, I said “It comes out to two and a half.” Ree snaps around, looks at me, I try not to laugh, and repeat, “the calculations. The answer is  two and a half”. Ree just kind of nods, writes it down, and I can’t even remember what happened later.

I have one thing to say to you Ree: get over yourself.

Wow, that felt good.

I have more to tell you all. I went to acupuncture for the first time yesterday, and I had an amazing experience while there. I think I’ll write about it separately though. Be sure to check back for it soon, it will be called “The First Time”*.

For now, I just have another few things to tell you. The first one is, I finished my drawing! We framed it, I took a picture of it, and it’s down below, after the song quote (as usual). Second, I have now officially been on a yeast free diet for 22.3 hours. Yeah. Third, test season is starting soon, so my plan is to write a bunch of pieces and store them for when I’m super stressed and don’t have time to think whimsically. I’m letting you know because… well, I actually don’t have a reason. Just so you know, I guess.

Be humorous!!!

Love,

Ella

Song Quote:

Someday we’ll laugh about it. –All About You, Birdy

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All done!!! The angle here is really random, but it’s the only way I could manage to show the whole drawing without showing my reflection…

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This picture was taken before I put the finishing touches on, but it shows the whole drawing much better than the picture I tried to take after it was framed… (I showed this picture in my previous post)

This drawing goes incredibly well with the theme of this post… I’m impressed with myself for not having planned it. The original photo was from: http://www.flickr.com/photos/artetetra/2401088691/in/set-72157600061371063

Pictures of earlier stages are shown in:

To Create, It’s Called Perseverance, Game

*EDIT: 10.23.13 – I never ended up writing “The First Time” (it’s not what you’re thinking, trust me), so I’m just going to kind of, maybe, sorta leave you all hanging… deepest apologies, everyone. I had another acupuncture session that unfortunately clouded over the glow of the first one, and since I just can’t seem to get back into that initial buoyancy. Again, apologies from me to you.

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

Birthday Ramblings – 16

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The dog my parents and I met on our walk along the beach, in honor of my birthday

This Friday, I turned sixteen. An age of promise, opportunities, excitement and adventure. I would really love to believe, with my whole heart, that my year will be like that. The only problem is, I’m afraid it won’t.

I’m scared, I’ll admit it. Being sick is scary, even if I try to ignore it. It could be a lot worse, but it’s bad right now too. When people asked me how old I was turning, and I told them sixteen, each and every asker got this dreamy look in their eyes and told me what a great age sixteen is, how I’m going to have so much fun, how great it will be. Each and every one. I smiled, and nodded. I hope so, I thought to myself.

I miss out on a lot of things kids my age are experiencing, and most of the time I’m okay with that. Maybe I’m even better off without those experiences. But with all of the talk of what a great year I’m supposed to have, I just want to be a normal teenager. One who isn’t quite as limited as I am.

My mom told me that on her seventeenth birthday, she suddenly got very sad that she was no longer sixteen. She said she didn’t really understand it then, and she doesn’t now either. I assume I have no say in the matter, but that’s not what I want to be feeling next year, that I wasted being sixteen. What do I mean about that?

I think I mean, along the lines of what I’ve been thinking these past few weeks, that I don’t want to waste my time on earth being sad or upset. I want to try to get as much out of life as I possibly can, leading as free and happy a lifestyle as I can. I want to explore my abilities, learn about the world around me and enjoy absolutely every relationship I have, be it with family, friends, animals, or inanimate objects. As my friend wrote in my birthday card, “Be JOYOUS! Life, life. Life. Life, life, life, Wooh!”. She’s awesome.

Altogether it was a very nice birthday, compared to my past few (for example, my entire class throwing a surprise party on the day of my birthday for another girl whose birthday was a week away… so nobody could come to mine. Kids are mean). Laid back, pleasant, and quiet, it was along the lines of what I’m up to at the moment.

Back to my main point, which was, I do believe, that I want to enjoy being sixteen. Yeah. I do. That’s basically it. I’ll talk more about fears and joy another time, even though I feel like that’s all I talk about. But, hey, if that’s whats on my mind…. right?

Just smile and nod,

Ella

Song quote:

I’ve come to know that memories were the best things you ever had… steady as the stars in the woods. -Old Pine, Ben Howard

 

P.s. Yay for over a hundred followers! Thank you everyone! It means so much to me to know that people out there are reading what I’m writing, and that maybe, just maybe, it means something to them. So, thank you.

The Question Is Scars

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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