I Hate Everything – A Tale of Optimism

For quite a while now my first thought every single morning has been, “I hate everything”. Well, to be fair, it’s usually a word that starts with “F”. Or “S”. But the second thought has been, “I hate everything.” It’s like the soundtrack to my life. *

Why? Because I’ve been in immense pain. But why have I been in immense pain? Because I’m busy. And that’s why it’s a phrase of optimism.

You’ve known me for a very long time – remember when I turned 16 and started freaking out about growing old and being sick? – and you know I’m big on self-reflection. I’m astounded when I think about how much I’ve grown in the past seven months, on so many fronts. Besides all kinds of official things – being upgraded to an adult credit card (not below 18 anymore), having no more age-related driving restrictions, having control over my own medical everything – there are the things that are less obvious.

I’m not here to list all those things. Normally that would be a classic post, but today I’m content with just the knowledge that I have grown. Today, I’d like to talk about the fact that I’m busy (and therefore I hate everything).

Since September I’ve been volunteering with a certain charity, and in the past few months I’ve had to make a decision: either find another place to volunteer for a year, or go on to university. I took the higher education entrance exam (psychometric test) and got a high enough grade to enter the excellence program and receive a 50% scholarship (!) at my school of choice. Attending the course, preparing for the exam and still working (i.e. volunteering) three days a week took a lot out of me, but the success felt amazing. So that covered the technical aspect of university for me, but I was left with the question: am I ready?

I’ve never told you where I live, what my real name is or what my religion is, and you’ve never seen a picture of me. You know no truly identifying factors (which I’m sure has driven some of you crazy). I have my reasons for this, but the reason I love the most is that this blog is the opposite of real life. In the real world, the first things you (usually) know about a person are what they look like, the part of the world they live in, their name and maybe their religion. It takes longer to learn about their personalities and their feelings, if you ever do. In this world, our world, the only things you know about me are my personality and my feelings.

Which is why I’m still not telling you anything, including where I’m volunteering or what country I live in. I wrote all of this simply to explain that in my country, it’s not weird that I’m not starting university at 18. In fact, even if I go when I’m 20, I’ll still be on the younger end of the scale. Generally speaking, I’m much older than my age suggests, so I’m not worried about fitting in socially with an older crowd, but I am worried about my feelings. I’m so separate from my contemporaries as it is, and if I jump shoot choosing a profession, studying and starting a career I fear I’ll feel galaxies away from everyone.

It has come down to the fact that I have doubts. I’ve decided that the fact that I doubt I’m ready to start is enough to decide I’m not ready. I’m not the sort to waste my time and I take things very seriously, so I’m not going to start until every aspect feels right.

Which leaves me with finding another place to invest my heart for a year. I’ve been busy because I’m following leads and putting myself out there, all the while keeping up my regular work schedule. Sprinkle in tutoring, physical therapy, exercise, doctor appointments, additional work events and the occasional (*gasp*) attempt at fun, I am exhausted.  

So my brain is occupied with hating everything the majority of the time because I constantly feel like I’m dragging my body around and running myself into the ground (please note that I’m still taking care of myself – I haven’t aborted the mission of health just yet). When the thought first started popping into my brain I was kind of amused – it is kind of a funny way for my mind to have phrased my displeasure – but I recognize that it’s a sign of me being proactive with my own happiness.

I am my own person, and I am making the decisions that are right for me. I’m not just sitting here, feeling miserable, and hoping I do something worthwhile with my time. I’m already doing it. I’m being smart about my life. I’m building my path from scratch and turning it into something I can be proud of. Even if I don’t always realize it, I know that every step I’ve been taking recently has been an offspring of a superpower: optimism. Somehow I’ve been operating under the assumption that I have the ability to make everything work out.

And that, ladies and gentlemen, is why hating everything means I am a true optimist. Farewell.

~~~

Ella

Song Quote:

We’re on the right side of rock bottom. –Rock Bottom, Hailee Steinfeld

*I literally push myself up into a seated position on my bed and think, “I hate everything.” Then I go to the bathroom and think, “I hate everything.” As I’m getting dressed, I’m thinking, “I. Hate. Everything.” When I find my way to the kitchen and start making breakfast, I’m just a broken record of, “I hate everything”. It’s quite the life I lead, my friends.

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A Letter to My Enemy

Dear Fibromyalgia,

I’d like to talk doogree with you.

           Doogree- straightforwardly, with no beating around the bush

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

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

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

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

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

See what I did there?

There is not much more to say.

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

Ella

Song Quote:

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

Proportional Pain and My Guilty Genes

Scrabble doesn’t come with a question mark, so we’ll have to make do without one

There once was a girl (A) who didn’t pass her cheerleader tryouts, and she was upset. There was also a girl (B) whose boyfriend dumped her, and she was upset. But then there was a girl (C) whose friend was dying of cancer, and she was upset.

Before us we have three (fictional) girls, and each is upset. Who, in your opinion, is most upset?

Please don’t answer that because it’s a trick question. I believe that it’s not fair to compare people’s pain because each is suffering in their own right. So yes, one situation seems way more serious than the others, but does that mean that the other two aren’t upset and don’t have a right to be? No. The fact that one person is worried about cancer and the other is worried about boys doesn’t mean that the one worrying about boys isn’t distraught and in pain, and you can’t discount that.

That said, I am human and sometimes I fail at upholding my own high standards. I look at this girl who is throwing a tantrum because she didn’t get the teacher she wanted for a certain subject and can’t stop thinking about girls in many parts of the world who have to fight to get an education, and often don’t win. I want to scream at her, “just appreciate what you have!”

But then those thoughts lead me to one of the most depressing inner conversations I regularly have. I know I’m suffering, and I know my pain is real, but at the same time look at the world, look at how many people live in terrible pain due to poor hygiene and distance from medical help, and see how many of them continue living completely normally. In comparison, I’m just acting like a baby. But those thoughts don’t make my pain go away and it still gets in the way of me doing everything people my age do.

So when I have these conversations, I force myself to the conclusion that it is important to keep things in proportion and not feel too sorry for myself, because compared to some my troubles are not that bad. I do think you need to keep going and try to pick yourself up, and that’s what I do. But there is also a real reason for sadness, and it’s okay to let yourself feel it.

When someone I know is suffering from a horrible headache, I bite my tongue and never let the “now you know how I feel all the time” escape. But I always think it. It’s not that I think their pain is lesser because it’s a one off thing, it’s just that it gets frustrating when people have no way to understand what I’m going through. I want him or her, for just a minute, to try to imagine what it’s like to feel what he or she is feeling every day and how hard it would be to manage.

Then I feel guilty. For not focusing solely on the person I’m with, but mostly for treating myself like I’m the top-sufferer, like I’m the most unfortunate. I promise you I do not forget how lucky I am to have everything that I have. But then after feeling guilty, I feel even guiltier because it’s almost like I just betrayed myself by my sort of accusation that I’m just exaggerating.

It’s exhausting.

So to girl A I say that there will be more opportunities in life and this way she’ll have more free time to hang out with her friends. To girl B I say that he’s a fool for breaking up with her and if she ever needs a wing-woman I’m her girl. To girl C I tell her how sorry I am and offer her my shoulder.

I allow myself only a minute to contemplate how it seems no one is ever that happy.

 

Yours truly,

Ella

 

Song Quote:

I find it hard to take, when people run in circles it’s a very, very mad world. -Mad World, Tears for Fears

 

Next Week:

My Relationship with Taylor Swift

Get ready to tweet along with me using #TaylorReadThis, because I need your help getting her to see it! So as of next Sunday when I put it up, we’re going to bombard twitter with this hash tag and the link to the post and try to get her attention. You with me?!

Chronicle of a Rereader

As little kids, we all get used to hearing the same stories before bed every night, and most of us love it. Somewhere along the way, when we learn how to read by ourselves, many stop enjoying reading something they’ve already read again. I am not one of those. I love rereading books.

I form an emotional connection with every (good) book that I read and with the characters in said book. I usually become super invested in them and I feel like I know them. My sister will never let me live down the moment when I came downstairs crying because a character in my book died. It’s not the crying she won’t let me forget. It’s my explanation for why it was so horrible: “I’ve known him his whole life!” When I reread a book, I get to spend time with these characters that I loved so much the previous time, and it never seems to bother me that I already know what happens.

Usually when I reread a book I also notice things I didn’t notice before. Be it a comment from a character that seemed insignificant (but isn’t) or a description of a place that I overlooked, every time I read a book the story becomes a little richer for me. The best example for this is, of course, Harry Potter. Don’t look surprised. You all knew this moment was coming.

I have read the entire Harry Potter series (which consists of 7 books), 7 times. That’s 1,084,170 words in the whole series x 7 = 7,589,190 words. I won’t talk about this for too long, because if I let myself get into it this post will be 18 pages long and consist almost entirely of gushiness. BUT, I will just say that every time I read the series I get something new out of it, and with every reread I noticed additional clues JK Rowling strewed throughout (which just means that she’s a genius, not that I’m oblivious). The most recent reread was just a few months ago, and I had thirty pages left of the sixth book, so I was sitting in my school lobby and trying to finish it. But, a character dies right at the end, and I always cry hysterically when any of the characters die. Just picture this scene: I am curled up in a ball with the book held in front of me, sobbing, and the bell goes so the lobby starts to fill up with students. Mainly people just walk by and go “Oh Ella!” but the lovely Beatrice comes to stand in front of me and starts to laugh. “Sixth time?” she says. “Seventh,” I correct her. True friendship.

The reason why I wish my school looked like Hogwarts…

Beyond the emotional connection I form with characters of a book, there is also an element of my own experiences over the period of time that I’m reading it. For instance, when I read “Tell it to the Skies”, a book by Erica James, I would meet a few friends in the morning before school started and update them with the new developments in the storyline. So now, when I reread it, I remember the feeling of them all waiting to hear me speak (which didn’t happen often during that time) and of sharing the excitement with them. I can use books to slip back to different times in my life and revisit them.

But alas, we cannot forget one more important factor here: whether I have any new books I feel like reading. Sometimes, I just want to read a story that I know is good and that I know I like. Like a few weeks ago, when I was worried about something medical that was creeping up and creeping me out, I chose to reread a fairytale book I love because I knew I would be able to take comfort in escaping in my mind to that other place. Sometimes I feel too not well to even read, but most of the time, if I really don’t feel good, I can read a book and just escape. Books are amazingly therapeutic, and rereading them is too. I hope you enjoy them as much as I do.

 

 

Love,

Ella

 

Song Quote:

Drench yourself in words unspoken. –Unwritten, Natasha Bedingfield

 

Announcement:

A few months ago, Julie Ryan contacted me and interviewed me for her fibro warrior segment. I just wanted to let you all know that for the first time she’s opening it up and inviting you to contact her and share your own story! Don’t miss out on this opportunity, you can find all of the info here: http://countingmyspoons.com/2014/08/fibro-warrior-share-story/

Good luck and enjoy!

All About Happiness (winning piece)

 

All great things come to an end, but sometimes the end is even greater than what was before. Five weeks ago I launched a competition (“Twenty-Five-Hundred”) to give someone else a chance to reach a new audience and feature their thoughts on a new platform, and last week the deadline passed. It is with great pleasure that I announce Paola R. as the winner! Without further ado, the winning entry:

 

Some time ago, I was searching for a quote about happiness. Because for me, being happy, is one of the most important things. I have to admit that I read A LOT of quotes, but none of them really inspired me.

There was one by Henry David Thoreau appearing over and over again and the more I read it, the more I disagreed with it. To the point that I started to hate it deeply.

“Happiness is like a butterfly: the more you chase it, the more it will elude you, but if you turn your attention to other things, it will come and sit softly on your shoulder.”

Sorry Thoreau, I don’t think you did a good job with this one.

Why would someone choose to compare happiness with a butterfly? Among ALL the animals, why to choose the one whose life is ephemeral? (Or really, really short, ranging from one week to one year maximum, in the case of some species).

We humans live a lot more than one year and if you tell me that I’m going to get only one year of happiness I start getting depressed and ask myself if life is worth living.

Then when/how do you get to be happy? Apparently, in order to be happy, you also need to be very lucky.   And even so, it’s not sure that you’ll be happy for a long time.

So if I understood properly, you get to be happy for a little while IF:

1) The butterfly sits on your shoulder immediately after it gets to adult stage. That way you have better chances of being happy for longer time.

2) Then you need to be extra lucky and hope to get the butterfly that lives more than one week. (If you get the short living butterfly AND you get it the day it dies, what can I say?! You are screwed!).

And, if you don’t pursue happiness, what should you do? Start a knitting course? Wouldn’t it be better to get a butterfly net and catch as many as you can?

Then let’s say that finally the butterfly sits on your shoulder (AND it’s the long living one AND it sits on your shoulder the same day that it leaves its pupa stage), can you move and be happy or you have to vegetate because there is the chance that it’ll fly away and take YOUR happiness with it?!?

 

 

Paola’s thought process was so easy to follow and expressed the kind of feeling that we all get at times: what’s up with happiness, and why is it so hard to find? My answer to her is this: you are right that Thoreau is wrong. Happiness is not something that comes to you; it is something you search for and ultimately find, though not always in the form you wished for or in plain sight. Seeing the happiness is a skill you can acquire, and I encourage you to practice.

This is the part of the post where I get all mushy. I just wanted to take a minute, as I so often do, to tell you that this blog has been a source of great happiness for me and to thank you all for your part in that. I’ve been contacted, either through the comments section or my email address (sickandsickofit@gmx.com), by so many compassionate and thoughtful people who had kind words to share with me. I find it hard to express how much these kind words mean to me.

This is the part where I ask you for a favor. I want to expand this blog, but I don’t know how. Instead of it only being a place where the conversation takes place between you and me, I want it to be a place where the conversation takes place between you all. All of the advice you give to me, you can give to other people as well. All of the kind words? Other people could use them too. I’ll keep thinking about how to make this happen, but if you have any ideas I would love to hear from you.

 

Be kind,

Ella

 

Song Quote:

Where you invest your love, you invest your life. –Awake My Soul, Mumford & Sons

 

P.s. Thank you so much to all of those who entered the competition, you are all very talented people!

 

About Paola:

I’m Paola, I’m a dreamer, I’m 42 years old and I have five kids. I never realized how much I loved writing until my real life started to suck terribly. I couldn’t leave my life, so I decided to write a story. I posted the chapters on my blog (http://dotedon.wordpress.com). The story became a book and hopefully I will publish it soon. After one year intermission, I started writing again.

Honesty

The stark difference between outside and inside doesn’t pass my notice. On the outside, I am calm, silent and still. Inside, there is so much movement it makes me sick. Or is the sick the cause of the movement? My heart is all aflutter; it feels as though everything within me is jumping, shivering, quaking.

They call my name. I walk in. I am only thoughts and yet I have no thoughts. We sit. The two men are seated before us. They tell me to talk. I’m surprised to find words leaving my mouth. I barely remember what I said.

Then one of the men starts talking, and I hate the things he says. Implying I have complete control over my body, and I could be better if I wanted to be. Implying I don’t get out of bed. Implying I’m making things sound worse than they are. The other man tells him to leave me alone. He doesn’t. And one thing he said shines in bright letters across the reel of my mind: “maybe if she just tries she’ll be better”. Maybe if he just tries he’ll be less stupid.

I want to run away. But heaven knows I can’t run. All I know I can do is cry, but I don’t. Then we’re getting up, and we’re walking out of the room, and the other kids my age look up at my face. I know they are there for the same reason I am, and they both look good. Like me. Put together. Dressed well. But wrong inside. A part of me wants to smile at them, encourage them, but I can’t seem to control the muscles of my face. Oh, I remember. It’s because I’m holding them tight so I don’t sob. Good thing I remembered.

I am sweating. I can feel myself shaking, but I don’t know if that is only inside. I still want to cry. I want to go home. I don’t want to stand in line. I don’t want to repeat the verdict five times to unsympathetic people. Isn’t the verdict good though? Isn’t it what I wanted to hear? The outcome was the best it could have been, I suppose. I know this makes no sense to anyone but me. I apologize.

But I hold it together, and I make it home. Composure. I am a master at it. I go about the rest of my day, but now it is night, and it all decomposes. I can’t hold it together anymore. The composure, I mean. Not the rest. The rest I hold together whether I like it or not, because there is no other alternative for me. But the composure – yes, that is gone. Officially. Like my documents are today.

I would wish you a good whatever, but I am pretty sure that is not what it is.

Ella

 

Song Quote:

I’m sorry for the honesty, but I had to get this off my chest. –The Man, Ed Sheeran

AUTHOR”S NOTE:

I really am sorry for the kind of depressing post today. I wrote this the other day after a not so fun experience, and as I always try to be honest with you and share how I truly feel about things I decided to put this up. There are moments when I feel like I can handle anything, and moments when I don’t. Sometimes everything just becomes a bit much for me to handle. The good news is, when I feel like that I write it down and then I feel a little better.

Totally unrelated, but… Time is almost up! You need to send in your competition entries today! You can find all of the information about the competition and how to enter right here: http://smurl.ws/0zi1tm  It’s still anyone’s game! 

To Growing Up and Staying Young – 17

With warm summer air surrounding us and the sounds of the crickets drifting in through my open window, I curled into my mother’s body and she hugged me to her; though I may be bigger than I was on the day I was born, exactly seventeen years ago, I will forever be her little baby and she will always be my mother.

She told me last year that as she turned seventeen, she was sad to part with sixteen. Today, I understand the way she felt then. Though sixteen might not have been exactly glamorous or particularly spectacular, it will forever hold a special place in my heart.

A lot has changed this year. I gained freedom, in a way, because I started and completed the whole process of learning how to drive and getting my license. Finally, something that everyone my age is tackling and mastering, and I could participate just liked everyone else. I even mastered it quickly and well, if I do say so myself. I probably annoy people a lot at this point when I talk about driving, but it’s fun to be the expert and the sage around my friends (I’m one of the only ones who can drive so far) on a topic unrelated to medical things.

The way I think about things has changed, drastically. I just approach things in a better way now. I keep up my positive thinking and I’ve developed an inner sense of humor that I’ve always had into a shield and a mood booster. I see humor in a lot of places I didn’t use to see it, and I cherish that change. It’s a change for the better.

I’m also more cautious, in a way, but at the same time I dare myself to do things I never would have done a year ago. I’m cautious with what I say and how much I share, not for fear of hurting someone else’s feelings, but for fear of sharing thoughts and feelings that I’m not yet sure about. I used to just blurb out whatever I was thinking, but now I take the time to actually form my thoughts before speaking and weigh the weight of what I’m sharing and how frustrated I will get if I can’t explain myself properly.

But I also take myself out of my comfort zone: I go places alone, I call people and talk on the phone, I do the things I know I should do but always feel awkward doing. I’ve just developed this way of approaching things and talking myself through them, and it’s starting to feel like I can tackle the things that have always intimidated me. I’m starting from the smaller things, like those I mentioned earlier, and at some point I will have the courage to face the bigger ones.

I also made the switch from thinking of all of the things I would like to do to actually doing them. I do more than talk, nowadays. Take, for example, my horrendous lack in general knowledge. For a bunch of years now I’ve been saying that I don’t know how I’ve been in school for so many years and yet there are basic things that I don’t know. This year, I just started educating myself. I bought a book called “The Knowledge Book”, and I read it before bed.

I’m just very aware of how I’m changing and how I’m learning to accept myself more and more. That’s another major change this year, my self-confidence. It’s been hard learning to accept my body with all that it puts me through, and that affected my self-confidence for a long time. But I’ve somehow learned how to separate fibromyalgia from my body, and because of that I’m learning to accept and like the way I look.

It’s exhilarating to realize that I’m getting older and there’s a whole new world of opportunities opening ahead of me, and absolutely terrifying at the same time. I’m sad to lose the feeling of being a child, of being protected by these strong and kind parents who are nothing but my parents. It’s huge to realize and to process that parents are people too, and to think of them as people before parents, but important. You do lose something though with that realization, because you can never go back. On the on hand, I still want them to take care of me and be there all the time, but at the same time the independent woman in me is showing her true colors and I just can’t wait to get out there in the world.

I’m sure it won’t be easy, but with every passing day I feel more and more ready to do it. To live life.

I propose a toast, to growing up and staying young forever.

 

Yours truly,

Ella

 

Song Quote:

Time may change me, but I can’t trace time. –Changes, David Bowie

 

You Thief Me Not

 

Who stole the cookie from the cookie jar? It was probably the same person that stole the words from my brain. Yes, surely it is one and the same. I’m thinking, if we join forces and try to capture the culprit and force him to return the stolen goods, we can all benefit and maybe even save others from the same terrible fate.

I think this thief preys on the weak. My brain is probably super easy to tap these days, what with all I’m demanding of it. Not only does it have to remember to tell my heart to pump and my muscles to move, it also needs to memorize copious amounts of information and regurgitate them on paper during a few high-pressure hours. Beyond those, it also has to constantly encourage my body to keep moving and keep coming up with new thoughts and fantasies to distract me from my pain. I sympathize with it, truly. That’s why I don’t blame my poor brain for being so vulnerable. It’s not its fault.

Now that we’ve established how the thief chooses its next victims, let’s move on to how he executes his crimes. My brain is most susceptible when I’m sleeping, of course, but I think that those hours are relatively safe because I close my shutters at night. Shutters keep brains safe, I believe. After much pondering, I have concluded that he must be operating while I sit down to write. This makes sense. Do you get it? It’s the perfect moment to act, while my brain is open and spewing, he can just come and pick out the best of the best.

Is the thief working alone? So I believe, for is he were not I would surely see someone else gallivanting with my words, and it has not come to that. Yet.

How will the thief be stopped? How do I restore my words to their proper domain and protect the future ones from being lost?

This is my plea for help,

Ella

 

Song Quote:

As he faced the sun he cast no shadow, bound with all the weight of all the words he tried to say. –Cast No Shadow, Oasis

 

P.s. If you help, I promise to share the cookies with you when we reclaim them.

Oblivion

For always, I’ve been worried about death. To just… disappear like that? No one will ever be able to know just who you were. Your history and experiences are recorded nowhere. All of the thoughts you’ve thought, all of your feelings… they’re just gone. Never to be seen again.

Sure, your family will remember you, and your friends. But you won’t exist anymore. Ever.

It’s scary. Here I am, a living, breathing human being. And in seconds, I can be gone, along with everything I feel inside. And just like that, I’ll never be able to talk to anyone again, I’ll never see another person, I’ll never hug anyone, and I’ll never get to experience new things. Suddenly the latest conversation I had with every person will be the last.

I’m not conceited enough to think that the world will be any different without me. If I die, I’ll just die. Simple. I want someone to tell me that the world will be a less good place without me in it. That I’m important, that I’m worth something. I try to spread goodness around me, and I try to make a positive imprint. I write down my feelings so that they can’t be lost. I save pieces of things that mean something to me. I don’t want to disappear. But I don’t have a choice in the matter, not really.

I’m not going to end my own life. That’s not what all these thoughts about death are about. It’s about the opposite: I don’t want to die. Because then I won’t be alive anymore.

Yours truly,

Ella

 

Song Quote:

Oblivion is calling out your name. -Oblivion, Bastille

The Strike

 

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!