I Am Strong

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I’m done. I am done with being sick. I don’t care if my body agrees with me or not. I am ready to be healthy again. My fears will all go away. My worries will come to naught. My strength will come to light.

It’s time to get my life back. No, that’s wrong: it’s not time to get my life back, it’s time to get my life. A life in which I am able to achieve what I set my mind to, a life in which I am no longer held back by things that are not in my control, a life in which I am free.

Freedom is a simple word with a simple concept. The definition of freedom is:

1. The power or right to determine action (think, speak, act) as one wants without hindrance or restraint

2. Exemption from external control, interference, regulation etc.

3. The quality or state of being free

But the truth is, that freedom means something completely different for each and every one of us. There are the technical definitions of the word, and then there are the definitions we hear about in songs, read about in books, hear about from the people we look up to and figure out for ourselves.

I’ve been waiting for freedom for a long time. I haven’t been sitting around waiting for a phone call to tell me I’m free. I’ve been working hard. I don’t think that sheer will power is going to make my Fibro go away. If that were true, it would have happened already. I’m not sure I believe that the current treatment plan will help me. I don’t know if this will ever go away.

But I do believe that I am strong. Until now, I was hoping that my strength would help me through. Well, I’m done with that. Now, today, I know that my strength will help me through. I don’t know when, and I don’t know how, but I am strong and it will happen. I don’t care that this week was bad, that I was clearly not better this week. I don’t care that I don’t get to eat comfort food. I don’t care that I have to force myself to exercise even when my body is screaming with pain, trying to shut down because it doesn’t agree with me that I should be moving.

I care about the fact that I don’t get to participate in things with my friends. I care about the people who have been with me all this time. I care about getting better. It’s time.

Are you with me?

Yours truly,

Ella

 

Song Quote:

If the clouds don’t clear, then we’ll rise above it, we’ll rise above it. –Before the Worst, The Script

 

 

Quotes about freedom that I used in a speech I wrote last year:

Freedom is not worth having at all if it does not include the freedom to make mistakes. -Mahatma Gandhi

The most courageous act is still to think for yourself. Aloud.  -Coco Chanel

I disapprove of what you say, but I will defend to the death your right to say it. -S.G, Tellntyre

You wanna fly, you have to give up the sh*t that weighs you down. -Toni Morrison, Song of Solomon

It was, he thought, the difference between being dragged into the arena to face a battle to the death and walking into the arena with your head held high. Some people, perhaps, would say that there was little to choose between the two ways, but Dumbledore knew — and so do I, thought Harry, with a fierce rush of pride, and so did my parents — that there was all the difference in the world.  – JK Rowling

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

 

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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?

 

I’m Scared

Okay world, here’s your chance: what are you trying to tell me? Us? What’s the idea behind all of this? Third car accident in two months. Is there a reason? A message? Because if there is, I’m not getting it. I’m just getting that my family is getting hurt, and scared.

We’re okay. I mean, we’re not, but none of us are in the hospital, or seriously hurt. I just feel my sister’s pain so much. She and my other sister were driving to school six weeks ago and were rammed into from behind. Both were mildly hurt (the middle one has fibromyalgia too), but mainly the oldest suffered a lot from whiplash. This was her first time driving to school since (the middle sister wasn’t with her this time). And again, rear-ended on the same stretch of road as last time.

I just spent the last hour with her and my mom. We were trying to calm her down. She couldn’t stop crying. I hope her neck won’t have any permanent damage at this point. She and my mom just left for the doctor’s.

We’ve been having a hard time as a family. The middle sister and I both have fibro, my dad is always travelling for work (he was abroad for the previous two accidents, and now this one too), and now with all of these accidents happening… Oh, and my mom has shingles right now, to top it all off. My oldest sister was only just starting to regain some sense of normalcy, of being able to move about. I’ve been under a lot of pressure. It’s test season at school, I have all of these tests on everything I am supposed to have learnt in the past two years, back to back, and I’m starting to buckle under the pressure.

So what’s the point, huh? Why is this happening? Because clearly, I must be missing something. If the world wants to say something, it can just frickin’ say it already. Stop hurting my family. I can’t deal with this anymore, it’s too much, I just can’t. My friends are stressed out about tests. That’s it. Why am I the one that has to have all of the bad things? Sick self, sick sister, sick mother, car accidents… When is it going to end? Is our luck going to run out?

I’ve been walking around for the past few weeks being afraid to say good-bye to parents. I’m always scared it will be the last time I see them. The night my dad flew abroad a week and a half ago, I didn’t sleep. At all. I was too scared. There was a storm a few days ago, with thunder shaking up the house. My mom left to go to the doctor, leaving me in charge of the kitchen where we happened to be cooking up our own storm. I was left alone in charge of everything that was cooking at the time, frying this, measuring that, checking on that, stirring whatever. The thunder was so loud, I was in such a frenzy multitasking, I just suddenly got this feeling that something really, really bad was happening, right at that second. As my mom was leaving, my sister was trying to get the other car to start so she could drive herself to the physical therapist’s office, a five-minute drive. The car alarm went off, and it wouldn’t stop. It was the siren, the thunder, the sizzling, and I felt like I was drowning. Drowning in worry, I guess.

I didn’t burn any of the food. My sisters complained that the chicken was a little underdone. My family made it home okay. My dad is safe, far away at work. I told myself to calm down. I wrote in my diary that I’m really scared something is going to happen to one of my loved ones, and told myself that now I could let it be and try to move on. But then I was talking to my friends, and they all said that even with school pressure and things, they still felt like it was going to be a really great week. I was the only one that did not agree. I couldn’t help it, I was upset and worried, still. I told them I had a bad feeling about the week.

Then today I woke up, and my mom pulled me aside as I headed to get some breakfast and whispered, “she was in another car accident”. She whispered because she could barely bare to say the words. Now I’m alone at home, sitting in my room and writing. I actually woke up today, with this feeling that maybe I could make this week be a little more fun. I decided to have a dance party, but who can dance on an empty stomach?

So I never had my dance party. All my energy went to my sister, I have none left right now. I still have to go to school, and I have art later. I’m exhausted.

I don’t know why this is happening. I’m not sure I ever will. Just please, please, whoever makes these decisions, take pity on us already. We’re good people. My parents, my sisters, myself – we’re all very good, decent people. We don’t deserve this. I know no one does, but still, we really don’t. We have enough troubles already.

We don’t need more.

If you’re religious, any kind of religion, pray for us. If you’re not, just hope in your hearts for my family and me that we’ll be okay. I’ll take any help I can get at this point.

I’m scared,

Ella

Song quote:

Alice, there’s no reflection in the looking glass, you wear your party dress but there’s no party to attend… She’s looking for a way to escape and wondering whether she can find a way out without being seen… There’s no one left in paradise, just a pack of cards without the hearts. –Alice, Mononoke

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)