I focus on the pain, the only thing that’s real

Image description: a cute little bee wearing a green hat, with the text "Your Illness does not make you a burden."  from the EMM, not Emma facebook page

Image description: a cute little bee wearing a green hat, with the text “Your Illness does not make you a burden.”

The one thing I wish I had know about chronic illness is how utterly hopeless it gets. I have never been a healthy person. I was born with a collapsed lung, so from day one, I was destined to a life of pain and disability. No one’s life comes with a manual or a handbook, but the one thing I wish I had known before watching things gradually getting worse was how hopeless things got. The one thing I wish I knew as I grew into, not grew out of, my disabilities is how incredibly bleak things get. There’s nothing in the world that can prepare you for this life. There’s nothing in the world that can get you ready for how dark things are. No one told me how horrible the depression was that went with chronic illness. No one told me how incredibly HARD it would be.

No one told me there would be days that I would want to die – not because I wanted to commit suicide, not because I had depression, but because it was the only end to the pain I could see. No one told me that there would be days where all my time would be spent crying, making phone calls, and sending emails – trying so desperately to get insurance to cover what I so horribly need. No one told me.

No one told me that I’d struggle with my faith. No one told me that I would see no hope. No light. No love. That I would feel so empty, so hopeless. There’s no words for the overwhelming emptiness and despair when you live in so much pain. When you throw every med at it, and you’re still not better. When a hope is dangled in front of you, like a carrot in front of a horse, but insurance cruelly yanks it away from you.

Image description: A puppy, with the text "You don't have to apologize for your illness. It's not your fault and you haven't done anything wrong."

Image description: A puppy, with the text “You don’t have to apologize for your illness. It’s not your fault and you haven’t done anything wrong.”

No one tells you that you feel at fault. That you feel you did something wrong to deserve this life. That you are a failure for dropping out of college due to medical reasons. No one tells you that some days, you wonder if you had made certain choices or done things differently, you won’t be this way.

No one tells you at first, it seems nice to sleep so much. But what people don’t realize is that it’s one extreme or the other. You sleep all the time, or you don’t sleep at all. They don’t realize that some days, you pee or shower. Literally. They don’t realize that sometimes, you get up the energy to walk to the bathroom, but then have to take a nap on the bathroom floor before you can shower. They don’t tell you that somedays, you walk back to your bedroom but you’re literally too tried to crawl back to bed, so you take a nap on the floor.

They don’t tell you that at first, it seems nice to have all the free time in the world. But you really don’t. Because some days, you’re too sick to move. Too sick to play a video game, too sick to watch a movie, too sick to even pick up your phone. Too sick to do the dishes, so you just throw them away rather then do them because you cannot cope or function.

They don’t tell you how you some days have to decide what food will taste the best coming back up. When you’re so hungry you’re crying, but so sick you can’t eat. There’s nothing that can prepare you for that. There’s nothing that can make you realize this is now your life. They don’t tell you some times you LITERALLY have to choose between one disease and the other to treat, because they don’t play nice together and the meds interact and could literally kill you before the disease does.

Above it all, no one tells you how lonely it is. How isolating. How it feels that no one understands. How it feels to be in so much pain that it hurts to even cry. To think. To be trapped inside your head, your body, your house. And that there is no cure.

But above it all, no one tells you that no cure does not mean there is no hope. No one tells you that because of this pain and suffering, you appreciate things that you never thought you would. Like actually putting on pants. Like actually sitting up. Like being able to sit outside barefoot, and feel the grass between your toes. They don’t tell you that you learn to live and adapt in ways you never thought possible. And that is a beautiful thing.

Note: The pictures came from the EMM, not Emma facebook page. Please click the photos to see her work! 🙂

The Stigma of Depression

I am tired of mental illness having such a stigma.  It feels like saying “I have depression” is open season.

Oh, you have depression?

Drink less caffeine. Eat more veggies. Go gluten free (newsflash: I am). Get more sunshine! Give up those evil meds, don’t let big pharma get you!

Oh, big pharma. The cursed big pharma.

This so-called big pharma is the reason I’m alive. Yes, I had an extreme reaction to Cymbalta two years ago (that’s another blog entry!). But my current medication mix? It’s the reason I’m alive. It’s the reason I am functional.

Medications aren’t a bad thing. Medications aren’t evil or wrong. Just because my brain needs a little poke to keep going, doesn’t mean I’m broken.

I hate how when people find out you medicate for depression, you get the side eye. I take my inhalers for my asthma. I take my medication to stop me from puking constantly. It’s not much different  to take a medication to stop my brain from being off-kilter.

Oh, the faith card. I’ve cried. I’ve wept. I’ve yelled at God, wondering why He chose this path for me. Wondering why He allows me to be depressed. To the people who say “oh, just have faith?” I’d like to give you a big middle finger. I’ve had faith. I’ve trusted God. And for whatever reason, I’m still this way.

For whatever reason. It’s a hard thing to accept, but it’s the way it is. It doesn’t mean that I am broken, that my faith is broken, that I’m not good enough. It doesn’t mean any of those things.

Just because I’m depressed doesn’t mean I’m sad. It’s so much more than that. It’s an overwhelming darkness. You know that feeling where you’re not quite sad, but you feel hopeless and bleak? Imagine that on a constant basis. Add in fuzzy brain. Add in wanting snap out of it, but it’s impossible.

You know the feeling where you wake up, and you’re warm and cozy in bed and don’t want to move? Try taking that, but add WANTING to move but not being able to, because the world is so dark and bleak.

I wish it was easier. To the people who tell me to snap out of it, to have more faith and it’ll change, don’t you think I wish I COULD?

Living la vida depression

So here’s the thing. I have depression.

Sometimes I get grumpy and mopey and nothing can cheer me up. It doesn’t mean there’s anything wrong with you or me. It means my brain is just silly and can’t function right now.

Sometimes I get clingy and need affirmation. If you are able to give it to me, that’s fine but it’s okay if you can’t handle it right now.

Sometimes I cry for no reason.

Sometimes I’m lonely.

Something I say weird things that are worrisome.

Sometimes I just need you to say “It’s okay, let’s have a pokemon battle.”

Sometimes I’m too depressed for movies and video games, and that’s okay.

Sometimes…

Sometimes I’m happy. Sometimes I’m silly. Sometimes I’m hyper.

It doesn’t mean I’m bipolar.

It doesn’t mean my depression has gone away.

It just means that I have emotions.

It just means that I’m me.

what i wish you understood

what i wish you understood
i’m not flaky. i’m not lazy. i may call myself those things and i may feel that way in the moment.
but i’m not. i don’t have control over this.
do you think i like being on two dozen medications?
do you think i like being so sick i can’t even watch tv or play video games? and that this happens on a regular basis?
do you think i like battling insurance for coverage for meds or doctors, or even just to have it? do you think i like not having my waiver right now?
do you think i like living in a messy apartment? god, i would do anything to be healthy enough to clean it. healthy enough to make it better.
do you think i like having my days and nights flipped?
what i wish you understood…
do you think i like being such a picky eater? between my texture issues and my dietary restrictions, don’t you think i’d change it if i could?
i wish i wasn’t this way. i wish i could make it different.
i wish you could see.
i wish that you knew.
i wish that it was different.
do you think i like it?
do you think this is the life i would have chosen for myself?
but yet. but yet.
you think i’m flaky. you think i’m lazy. you think i don’t care about you and only think of myself. you think that i’m unreliable.
every time i have to cancel plans because i’m literally too sick to move, it breaks my heart. i weep. or other times, i would weep, but i’m actually too sick to cry because it would make me sicker.
do you think i enjoy this? i would do anything to be healthy.
i would do anything to go back to school. i would do anything to not be this way.
but i can’t change it.
instead sometimes i go days without eating, because my body rejects it. days without sleep, because my body rejects it. days without speaking to anyone, days without social interactions, because i literally cannot.
who would choose this life? who would want it?
why do you think i’m doing it just to make it harder for you?
why do you think these things? don’t you realize how much it hurts me? don’t you realize how much i hate it? don’t you realize that i would change it all, in a heartbeat, if i could?
do you think i enjoy the looks? the stares? the constant questions? for some reason, having a visible disability makes it open season.
i can try to have all the sarcastic and witty remarks, but they can fall in the moment.
i am sick of dealing with ableist bullshit. i am sick of dealing with people who think they know my life better than me.
i am sick of all of it. and i can’t keep pretending that it is okay.

because it isn’t.

it was a year ago

It was a year ago.

It was a year ago that I turned in my laptop. That I turned in the paperwork that put me on medical leave.

It was a year ago.

That I was only one month away from graduation – though I still had fall semester ahead.

It was a year ago.

When I realized that my health was completely falling to shreds. That no matter what I did, I would never be healthy, I would never be healed, and my dreams were crushed.

I feel I have nothing to show for this year. Video games beaten? Anime watched? Movies memorized? It feels like such a profound waste of a year

I feel I have lost a year. That I’ve wasted days away sick. That I’ve just been a lazy, stubborn, stupid idiot mooching off whatever. Irrational as it sounds, that’s how I feel. Because my health is slowly getting worse. I am massively in debt for a degree I will never achieve, for a job I will never have.

10 years ago this autumn I entered my senior year of high school. I expected to have my master degree by now; I expected to have a job.

And yet I am nothing.

I wonder what could be so tragic, make you want to take your life

It’s hard to see beyond your pain, when you feel so dead inside. It’s hard to see what you’ve been given, it’s hard to see the hope in life. And I know it’s hard to take what’s happening, and I know life is tough sometimes. And I know it seems like there’s no hope for you, and I know that your life is worth more than you can see. 

This is a Christian song by Seventh Day Slumber. It quite literally saved my life junior year of high school. I didn’t really like the Jesus-y parts as much (and they’re there, trust me) but the second verse and this chorus helped so much. The worst of my high school depression was the 2004-2005 school year. I went from private school to home schooled. I lived with my abusive father. I had very few friends and found solace on message boards. I was in the deepest parts of self injury… most of my pictures from that time frame involve long sleeves. And yet, this song carried me through. This song reminded me that there was hope beyond the horizon. That you know, it’s okay that things suck right now. Sometimes life just sucks and kicks you in the ass. And there’s not a damn thing you can do about it. But at the same time, it’s going to get better. It won’t always be these bleak.

Right now, I’m in the midst of another dark depression. I’ve had a few truly dark times – 11th grade, early 2009, the Great Cymbalta Nightmare, and now. It’s bad. I’ve been playing medication roulette.

Things are bleak. Things are dark. I’m in a battle for my services. I’m in a battle for the things I need to live, to enjoy life, to have quality. It sucks. I wouldn’t wish this nightmare on anybody. And it’s the life I have. It’s the life I’ve been handed. And I don’t know why.

But perhaps one day the new dawn will come. Perhaps I’ll find hope again? Right now, I just don’t know.

So when the whole world turns against me and I’m all by myself, and I can’t hear You answer my cries for help. I’ll remember the suffering Your love put You through… and I will go through the darkness if You want me to

I spent three years at a private Christian school. We often won character awards or fruit of the spirit awards. Without fail, I was always the one to win the faithfulness reward. The one who had a steadfast faith. Friends, adults in my life, everyone would comment on how strong and unshakable my faith was.

I am very much a cradle Christian. I was dedicated into the Nazarene church at a very young age. I’ve had a vast amount of Bible knowledge and have kicked ass at Bible trivia since I could read. Back then, I thought my faith couldn’t be shaken. Back then, I thought my faith was the only sure thing in my life.

Lately these days, I find myself becoming disenchanted with the notion of Christianity. And it scares me. I haven’t been to church in over a year. It’s sad and depressing, really. How did my once unshakable faith become so shaken?

And I find myself wondering if God is even wanting of me anymore. If God even desires me. After all, my arms have scars I created myself. I have used food as a way to hurt my body. I’m broken. Physically and emotionally. What could God want to do with me?

It’s hard. I find myself wanting to yell at God and call Him a few select names. I find my health falling apart and no one knowing why. I find my physical and emotional health in shambles.

I find myself questioning how He could be strong enough to fix me. Which is kind of silly if you think about it. Why am I questioning the one who formed me himself? I mean, hello, God sees me even when I’m pooping. If he’s okay with that, why am I so worried that he won’t take me “as is”?

Why do I question if the One who was by my side during every appointment, even if I didn’t feel Him, is strong enough? Why do I question if the One who was strong enough to give up His own, only beloved Son is strong enough to fix me?

There’s a peace I’ve come to know, though my heart and flesh may fail
There’s an anchor for my soul, I can say “it is well”
Jesus has overcome and the grave is overwhelmed
Victory is won, He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on Eagle’s wings
Before my God, fall on my knees

The thing is, my heart and flesh will fail. I’ll fall victim to my emotions, to my mortal desires, to my physical health. But there is one thing that won’t fail – Jesus blood never failed me yet, never failed me yet. There’s one thing I know that He loved me so.

I may have failures in life. I may screw up. I may watch every aspect of my health fall to pieces. I may struggle with my faith. But you know what?

It’s all a part of life.

I hear the Saviour say, “thy strength indeed is small
Child of weakness, watch and pray, find in me thine all in all.”
Jesus paid it all, all to Him I owe
Sin had left a crimson stain, He washed it white as snow

Lord, now indeed I find, Thy power and Thine alone
Can change the leaper’s spots and melt the heart of stone
Jesus paid it all, all to Him I owe
Sin had left a crimson stain, He washed it white as snow

And when before the throne, I stand in Him complete
Jesus died my soul to save, my lips still repeat
Jesus paid it all, all to Him I owe
Sin had a left a crimson stain, He washed it white as snow

Oh praise the one who paid my debt!
And raised me up from the dead

Wish that I could cry, fall upon my knees

arriettyIt feels like there isn’t any fight left in me some days. It’s often hard to find something that is worth fighting for. After all, when depression is taking roots deep within you, just trying to fight is sometimes more trouble that it’s worth. Why fight? Why keep trying when everything seems so bleak?

But there is always something worth fighting for.
Always. Even when we cannot see.

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I remember when I was first officially diagnosed with depression. Now, it’s been a struggle since childhood but it all came crashing down when the police came to my school in November of 2001. That sounds way more overdramatic than it was.

It was, as I said, November of 2001. I was 14 years old. I lived with my emotionally abusive father. I attended a small (seriously small – 30 kids prek-11) private Christian school. I had just changed churches that summer. I didn’t have many friends. And that was when I immersed myself in message boards.

You see, it was a world where I was just a face behind a keyboard. It was a world where I could be myself. Without parents, without people judging me for being the kid with the speech impediment, the girl with braces. But I was foolish (or was I smart?) and gave out way too much personal information…

Which is how the police came to my school. I was suicidal. I wanted my life to be over. I was 14 years old. I had been abused by my father since I was four years old. And I was done. A concerned friend managed to track me down, hence the police showing up at my high school.

14 sucked. I started cutting that year. I started my medication roulette. I watched my world fall apart. And I’m still picking up those pieces. I’m still playing medication roulette. Yes, I’ve been trying to find an antidepressant that doesn’t make my life suck since I was FOURTEEN. I’ve been on every SSRI. I’ve been on SNRIs. I’ve been on atypical antidepressants. TCA anti depressants. IT. SUCKS.

I’m no longer suicidal – my last time was two years ago (another blog entry for that). I’m no longer cutting, that was four years ago. But I’m still crippled with depression. I’m still playing Medication Roulette. And I wonder if it’ll ever be over.

Will it? I hope so.