Home.

I love the life I lead. I love the (brave) new world I’ve built for myself here. I love everyone around me – all of these people I didn’t know four months ago, who are intertwined in my story now. I love the aspects of my life that didn’t exist before.

But I want to go home. Real home. Just for a few days.

For a few days I want to go to sleep in my old bed – a bed that knew more restless nights than restful ones. A bed that is soaked to the core and coated in memories of pain upon pain upon pain. A bed I used to lay in and dream about having the life I have now.

I want to go home, so I can crawl into that bed and cry.

I want to cry surrounded by walls that are used to containing my tears, walls that know how to stay standing in the face of whatever it is I’m feeling. I want to cry covered by the blankets that have kept out the cold, harsh reality and kept in my dreams when I just wasn’t strong enough to get up. I want to cry looking out the window and seeing the view I saw every time I cried until I went and upended my world four months ago.

I’m tired.

There, I said it. A word that I use all the time, still, but the implications of which I’ve been pretending no longer exist.

My (brave) new world is intense. I wouldn’t change a thing, but I feel physically, mentally and emotionally wrung out by all that has happened since August. I have everything I was hoping to have, everything is going so well, and being happy about that is exhausting me. I never stop moving. I never stop feeling. (I never stop feeling like I’m missing out on things, whether I spend time in my new world or my old world. I’m always torn between the two – I want to be in both at once.) I never stop missing people.

“I miss you.”

Tomorrow, I’ll go home. I’m so overwhelmed I just want to cry. I wouldn’t change a thing.

~~~

Ella

Song Quote:

Must be love on the brain, that’s got me feeling this way. -Love on the Brain, Rihanna

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The Strike

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I would say the past couple weeks have been like a roller-coaster, but I’ve never been on one, so I don’t think I have that right. What have I been on? Trains. Busses. Planes. Pain meds. Herbal extracts. Okay: the past couple weeks have been like travelling in a bus that’s on pain meds, and therefore can’t figure out if it’s actually a plane or a train. Stir in herbal extracts.

Last week I wrote (and didn’t post): “I feel so pathetic. I’m so tired. I don’t even know how I made it through the day. I just don’t know what the point is anymore. I fight and I fight, I write inspiring words on my blog and tell people that I’m okay, it’s hard but I’m okay, but I am not okay. It’s all futile, all the hard work and the torturous treatments, they aren’t working, they aren’t fixing me, I’m still like this…. It all just seems impossible. It feels like I’m being punished, and yet held up on a pedestal by my teachers who admire how I handle it all. I don’t want it anymore. But what always happens is going to happen again – I’ll feel like this, I’ll go to sleep, I’ll wake up, I’ll start getting ready and then I’ll just go through the motions of life and time will pass and before you know it I will have ‘made it through the day’ and be ‘coping’ again. It’s inevitable.

I…

I…

I’m… just so               

Tired. Of all of it. I can’t hold back the tears any longer. How am I going to make it through? Is this all that life is, just awful things and ‘coping’? Is this what the rest of my days will look like? Cause today was bad.

I feel helpless, and hopeless.

E.”

From the strength going on in my last post, I went into a tsunami of fatigue. It lasted a while. I spent the whole next day just staring, because I was too tired to even read. I only smiled once — smiling isn’t energy conserving. The next day I had a test, and the only thoughts I had the whole time were, “Yeah, I know the answer to that. Oh, I have to write it down? I need to move my hand? Do I really? What will happen if I don’t? I don’t think I can. I’m so tired.”

There was also an annoying question on the test that required some calculations (it wasn’t a math test) and I knew that with the brain fog happening I would mess the calculations up and lose the points for the question, so I politely raised my hand.

Me: I know it’s pathetic and sad, but I need a calculator to answer this question.

Teacher: Really? Ella, you really need a calculator? You’re serious?

Me: Yeah, I really do. I honestly don’t know what a million divided by five is right now.

Teacher: Really? Really? You don’t know how to do that? Are you joking?

Me: No, I’m not joking. Can I use a calculator or not?!

Teacher: Okay, I’ll tell you. What do you want to do?

Me: A million divided by five.

Teacher: Ella, it’s 200,000.

It’s a good thing I asked, because I thought it was 250,000. When I’m that sick, I can’t think! I was not happy with my teacher for the way he responded, loudly, in front of the whole class, making a big deal over the fact that I couldn’t do simple math. He’s not a mean guy and he really didn’t mean to be mean. He generally means well and he’s been very kind to me, but sometimes he’s clueless.

If I tell you about every day, this post will never end. I can endlessly find more words to describe my pain and my suffering. In short, I had days that were up and days that were down (like the day that lead to the italics). I had moments of great depression and moments of elevation. Well, maybe elevation is a little extreme; moments of feeling slightly hopeful. Another test this week was messed up because of fibro fog. It’s so frustrating; it’s not that I don’t know the material, it’s that I can’t get it out of my brain.

My right foot has gone off its rockers. I was talking to a friend who lives on the other side of the world and suddenly my toe just dislocated itself. It felt like the toe next to my big one (does it have a name?) just snapped downwards and underneath the one on its right, and I couldn’t get it to move back. My whole foot kind of seized up and I just looked through the camera at my friend and said “I have to go call my mom now”. I wrote to her later and explained it all. I have no idea what it was, just some weird cramp, but it was extremely painful and scary. It went back into place after I laid it on a heating pack, and I know that it didn’t actually dislocate itself, but it felt like it did.

Then a few days ago, when I was having an up day, I had a couple friends over for a movie, and when I bent down to press play it happened again, exactly the same way: suddenly, without me having done anything, my toe just pops out of place and gets locked in a different position. I must say, I’m very proud of the way I handle sudden pain. I am the picture of serenity. Ish. Anyway, it went kind of like, “Hey, do you think you could reach above the fridge? There’s a purple pillow there. Yeah, could you just stick that in the microwave and hit start? Oh, thanks! What? Oh, nothing. My toe just feels weird. Yeah, I’m fine on the floor. Oh, thanks, that’s really sweet, but I honestly don’t think it would go well if the two of you tried to lift me and swing me on the couch. I’m good, I’ll sit here for a few minutes.”

Other than that the night was great. Unfortunately I still feel it spazzing out. My whole foot has been cramping ever since and my toe still feels dislocated. There seems to be no end to the weird sensations that plague my body daily. Sheesh, I sound like I’m 80.

I’m tired. I’m scared I’m going to run out of fuel at some point. I have a few high-pressure weeks ahead of me, but I need to work a lot on calming down, seeing as that is probably the cause of the foot fiasco, as I have taken to calling since half-a-second ago.

Yours,

Ella

Song Quote:

I think I’m being shunned by my feet… again. –Homeless, Ed Sheeran

Okay, I’ll admit, I have been waiting a long time to use that quote. Glad it works so well here!

 

P.S. I would love it if you would leave a comment with your favorite quote. It can be from a song, something you saw online, a well-known person’s fancy sentence, a life motto, anything that comes to mind when you see this, really. If you know where the quote is from/ who said it, please include that too. Thank you in advance!

 

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.

Not This Way

RIP sleep

This isn’t how it was supposed to go. I wasn’t supposed to feel like I was seconds away from collapsing all day. I’m not supposed to feel this upset after what otherwise would have been a great day.

 

Today was my first day of junior year, and like anyone would be, I was excited, nervous, and not at all eager for it to start. But at the same time, I was worried. I chose a beautiful outfit to wear today, got my hair cut a few days ago (so now when I wear it down it’s layered and naturally wavy), and got myself just a bit pumped about a new school year. But I was worried.

 

Ten minutes in, I felt sick to my stomach and needed to run outside. Too much noise, too many people, too many limbs around me. Outside it was extremely muggy, so after realizing I was probably going to get more oxygen inside, I went back in. Playing super hero music in my head and thinking “I’m going in” helped a little bit with that tough decision.

 

See, you all pretty much know me by now, or know the way my quirky head works. You know that I am generally an optimistic person, and that in almost every post, regardless of it’s theme, I have some witty or weird sentences that lift the spirits a bit. This comes naturally, and it wouldn’t be me writing if whatever piece didn’t have those. Right now though, I don’t want them to be here, because it’s makes me sound happy or strong or brave or whatever, and I’m not! Well. I am. But I’m not. You know?

 

No.

 

I had a really hard time. I’m not going to get into everything that happened today, but I’ll share a few main events that show that the staff at my school are incredible, and that I feel really sick:

 

-My teacher had the “tech staff” turn down the volume on the microphone after it worsened my migraine.

 

-The school guidance counselor brought me a cup of water and offered to take me home when she saw how I looked (dead and sweaty).

 

-The principal picked up my backpack, carried it for me, and let me stay in his office (under the air conditioner) until I felt a little better.

 

-The school superintendent is setting up a cupboard in my main classroom so I don’t have to walk down two flights of stairs to get to the lockers.

 

So as you can see, my school has been absolutely amazing to me so far, and it’s only been a day. I’m so incredibly thankful for them, especially the guidance counselor who has been on my side since the first day three years ago, when I transferred into this school. She’s known me since before all of the medical shifts and scares.

 

At the same time, this year is extremely intense in terms of school work and schedules, and my energy is so limited that whatever leeway I’m given will only make a dent. I have a long scary year ahead of me, and I want to just go ahead and tackle it, but I don’t know if I can. I’m so sick and so tired after one frickin’ day. How am I supposed to last more than that?

 

It doesn’t help that I haven’t seen my dad in forever. Part of it as because my vacation was longer than the rest of my family’s, so I missed a week, then he went away on business. It has been two and a half weeks since I saw him, and he comes back this Friday. Usually our relationship is great, even when he’s away, but this time it’s been complicated. He’s away so often, and he misses so much of my life. I know it’s not fair to be angry at him, because it’s not like he’s having that great of a time and he’s just abandoning us. He’s working all day long, and I know that he’s probably lonely. He just… he’s away, you know? My life keeps going, and two weeks in teenager land is a major chunk of time.

 

He misses doctor’s appointments, school meetings, tests, and dinner I cooked for everyone last night. Ten minutes on the phone everyday is just not enough. He also has a knee-jerk reaction to any complaints, which is to get angry/frustrated and try to make it clear to us that the world is a mean place and we should just deal. The thing is, I’m not like some other family members: I rarely complain. I rant, but in a funny, sarcastic way. If I’m complaining, it means it’s serious and I need support. Him telling me off is not what I need. It’s not like I’m trying to have a bad day on purpose.

 

For instance, when my mom and I went to another doctor last week (a new one), he (the doctor) was a total jerk and upset me a lot. I talked with my dad on the phone right after, and I was basically sobbing into the phone. He very quickly just got frustrated and told me I should just deal and not over-react. When I talked to him the next day he told me he talked to my mom, and “it turns out” I “wasn’t exaggerating, the doctor really was a jerk”. No kidding. I told him I don’t normally complain or make a big deal out of little stuff, so if I tell him something, he should just take it as it is. It’s the truth. It doesn’t help that he always has to cut the conversation short because a meeting is starting.

 

I try to be understanding, to tell myself that he’s working really hard, that he didn’t choose to have to travel so much (except he did, basically), and that he would much rather be home with us all the time. But at the end of the day, when I’m a kid and he’s my dad, he just isn’t home. I hate it, and I’m crying, because I miss him and I don’t want to have to write this down. If I don’t though, I’ll just feel worse.

 

Starting a new school year is never supposed to be all that amazing, but it definitely wasn’t meant to be like this. I just want to feel better already. Screw all that telling myself it could be worse, and that I should love and enjoy life. Life right now sucks. I want to be better. Healthy.

 

I can’t sit here anymore, my back hurts.

On that absolutely beautiful and uplifting note,

Yours truly,

Ella

 

Song Quote:

All the dishes and the words would pile up inside, she loved the world but it didn’t love her back. -Expecting Too Much, Orla Gartland