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?!

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Try To Keep Up

 

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?

 

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)

It’s a Landmark

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 20^th 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 3^rd 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

The Life of a Nightmare

Birds sing. It wakes me up, and that’s how my day begins.  I go to school, where I’m liked enough by my peers to not be picked on. My teachers generally think well of me, which is a good thing. I have clothing on my back, clothing that I like, and I’m not ugly.

I work hard at school, and I see the results. I have a couple of friends who care about me. I live close enough to school that I can walk home, and I listen to music, which always makes me happy.

Once home, I have relative freedom. My parents love me. I have two sisters. I have my own computer, and my own room. I have space to do my homework. I can have friends over if I’d like. I live in a fairly safe town (in a not so safe country). I don’t have to be afraid to step out of my door.

Truly, if I look at myself from afar, I can see why people think my life must be great. I have what others covet. Supposedly.  Other people might think of my life as a dream. I appreciate what I have, I’m aware of how wonderful it is to have these things.

But I’m living a nightmare. An invisible nightmare, to those who aren’t me.

When the birds sing, it hurts my head. When I wake up, I awake to pain.  When I go to school, I’m faced with the horrible truth: I’m no kid anymore. I’m light-years older than everyone else, because I have to be.

Everything that sounds good on that list, is awful is you’re feeling constant pain. I can’t think, can’t breathe, can’t exist, without something about my body being wrong. Our bodies were designed to work. Not to spread pain. With one pain, comes another, and my body tries to adjust. But it can’t. Because pain is a domino, and my body can’t let its guard down.

And people think they should covet what I have. I want to throw a tantrum, kick my legs, punch teddy bears and scream at the world: why was I given this? I want to grab the world by its neck, shake it, and make it realize something: just because something looks great, doesn’t mean it is. But more importantly: just because someone looks okay, it doesn’t mean that they are.

To you, something may look like a dream. But more likely, it’s a nightmare.

I can’t sleep at night,

Ella

Song Quote:

Look into my eyes, it’s where my demons hide. -Demons, Imagine Dragons

The Little Things

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

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

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

FIN metaphor.

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

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

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

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

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

Huzzah for the little things.

Yours truly,

Ella

Song Quote:

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

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

Ready For a Zombie Apocalypse

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

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

 

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

 

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

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

Dream happy dreams,

Ella

 

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

Song quote:

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

I Am Effervescent

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

 

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

 

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

 

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

 

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

 

Good luck,

Ella

 

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

 

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

 

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

What don’t you understand?

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

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

 

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

 

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

 

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

 

For instance….

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

 

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

 

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

 

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

 

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

 

1. If only you pray harder…

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

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

My response: Wanna trade?

3. But you just look so good!!

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

4. It’s all in your head.

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

5. Your illness is just caused by stress.

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

Okay, so maybe these are a little extreme.

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

 

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

 

But a girl can dream, right?

 

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

Stay tuned.

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

 

Yours truly,

Ella

 

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

 

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