Vicious Cycle

Hey all, I know I’ve pretty absent lately and I’m sorry about that. I’d hoped to be more involved over the break, but actually the opposite happened. I know I haven’t kept up with things or been as engaged, but it has nothing to do with you lovely people. So I thought I owed y’all a bit of an explanation and a little look into the other side of my life, that unfortunately has very little to do with writing.

If you’ve been around for a while, you probably know that I’m chronically ill, including a heart condition called postural orthostatic tachycardia syndrome. I’ve been lucky enough the past year or so to be doing really well, with mostly good days with a few scattered bad ones, versus bad days with a few scattered good ones. I’d hoped that meant my condition was improving, or at least I was able to manage it enough to live a relatively healthy and full life.

Well, lately that’s been changing. I’ve had more and more episodes, more sick days, more days trapped in bed. The worst part is always missing out. I missed out on a lot of family time over the holidays, I missed out on parties and a lot of my social life, and now I’m starting to miss out on school and am dreading the semester ahead.

I wanted to spend the break writing, but honestly in two months, I haven’t even written enough to fill a page.

The problem is there’s a lot of times that I’m too sick to be writing, but then the rest of the time I don’t feel like writing. I feel frustrated, helpless, trapped, alone. It’s like having this big, heavy leech on my back all the time, sucking everything out of me.

It’s scary to think that I’m getting worse, that I might even relapse to the severity that I was before. I don’t want to be stuck in bed for three months again. I have huge plans and goals for this year. I don’t want to lose all of the things I love, especially not writing, and especially not this amazing writing community. This is when my body reminds what it really means, and what it really costs, to live with chronic illness.

I’m trying to turn to writing to help me through this, but sometimes it’s just hard. It’s hard to break this cycle of feeling sick then feeling down, with no space for writing in between. I’m hoping I can shake this soon, but I also know things don’t always work out the way we want them to, something I’ve been learning the hard way lately.

Thank you all for sticking around, even though I haven’t been the most present and engaged. Please be patient with me. I’ll do my best to post and respond to all of you, but know that I read and value every single response I get, whether I’m able to respond or not. Sometimes your comments are the highlight of an otherwise dark day.

I hope I can get through this soon, at least get back to writing, but with chronic illness you really never know. Either way I’d really appreciate prayer, positive writing vibes, whatever you can spare right now 🙂 Thanks, and hope to see more of y’all! You really are all the best.

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What’s Up Wednesday

What’s Up Wednesday is a weekly blog hop created by Jaime Morrowand Erin Funk, to help connect writers on this writing journey. If you’d like to join us, check out the blogs each week, get to know some of the other writers taking part, and spread some writerly love! 

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What I’m Reading

I’m still reading The Park Service by Ryan Winfield. As much as I’m still loving it, I just haven’t had much time to read lately. But if you haven’t yet, it really is worth buying (I mean, 3 bucks on Kindle? It doesn’t get better than that) He’s a great storyteller and world builder, and I’m taking notes as I go along 🙂

What I’m Writing

Well, I finally broke 80,000 on my manuscript! It sort of felt like there should have been fireworks and cupcakes, but sadly there were neither. When I started writing this book, 50,000 seemed massive and impossible, and I was struggling for word count. But now I’ve done over 80,000 and it feels pretty great 🙂 I finished this round of revisions, and printed the first 100 out for a read-through.

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Isn’t she beautiful?? So far, I’ve tackled the first 25, and I have notes for every single page. It’s amazing how much of a difference it makes reading through it printed. I mean, I’m noticing typos and missing words, even though I’ve read through it 500 times. And reading it like this makes it feel fresh, so I’ve noticed some questions readers might have or things I never saw before.

What Inspires Me

Right now, I’m really inspired by others. Like I said, Ryan Winfield is a great storyteller, and reading his book has given me a lot of ideas and notes. I also love meeting with my writing group and bouncing ideas off each other, even if it’s not for my own manuscript. I love seeing the process, and that moment when the lightbulb goes off and everything comes together. 🙂

What Else I’m Up To

The Bucket List is still going strong, and has made for some great laughs and memories 🙂 Boyfriend and I are starting to seriously look into some mission trips for either later this year during winter break, or next summer. We’ve more or less narrowed it down to two trips, India and Nepal–though the Nepal trip is physically demanding, and I would have to consult my doctors and create a conditioning plan in order to go. But I’ve been taking it into my own hands and exercising (little bits at a time) and hopefully that will make a difference.

I have been lucky enough to be in good health lately, but I can’t take anything for granted. But we just found out that there is a new prescription for POTS, just approved by the FDA. I don’t want to get my hopes up, but the idea that there might actually be a treatment that works would be a dream come true! In the mean time though, I’m just trying to stay healthy and enjoying it while I can 🙂

Happy Wednesday!

Maybe You’re Too Stressed Out

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Ranking up there with “you don’t look sick” is “maybe it’s stress.” I really wish it were that simple. I have a physiological problem that causes debilitating symptoms, has required multiple surgeries, and cause multiple complications that nearly killed me. Stress does not do THAT. I’m not mental. Stress doesn’t help, but it’s not the cause of my flare.

Again, this comment makes me feel as though I’m not taking every measure possible to take cafe of my health. No, with all I go through, my health is my top priority. It is, after all, my disease. I should know.

“I know exactly what you’re going through.”

Ok, maybe that’s my least favorite. Seriously? Seriously?!? A person, who shall remain nameless, had a large intestine issue that was resolved with a resection. Said person spent 3 days in hospital, recovered smoothly, and has gone on their merry way with life…

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Episode

Today I had my first severe “episode” in a while–about a couple months or so. For me, an “episode” is when my dizziness and weakness are so severe I cannot walk or use my limbs (my hands often freeze up and my body goes limp) as well as mild seizure-like convulsions. This one happened while I was in the shower, with little warning. My legs gave out from under me, and I had to shout for my mom. After she helped me into my bed, she positioned me ( propped up and legs bent, to help with blood flow) half my body frozen and the other half twitching, while I waited for it to pass. This one lasted over an hour. The longest I have ever had lasted almost four.

This is not the first time this has happened, but the first in a long time, and I have been feeling better for a while. I guess I got lulled into a sense of security. Outside of my episodes, I still experience the more general symptoms–nausea, weakness, fatigue, etc–nearly everyday, but I have learned to mostly manage them (I still have my good and bad days).

I haven’t been taking as good of care of myself as I should be. I have been lax on my meds and supplements, not doing my exercises, not drinking as much as I should, and been way more stressed lately than is healthy. But with everything in my personal life, plus work, and the end of the semester coming up, I haven’t had time.

Today was a little bit of a wake up call.

While I may go a month or two feeling “healthy” I have a chronic illness that I will have for the rest of my life. Sometimes when I am feeling better, it is easy to forget that I am sick. I want to forget that I am sick, and be normal for as long as I can. I am so stubborn and independent, I think that if I act normal and healthy enough, I will be. But apparently it doesn’t work that way.

I am recovered (for the most part) now, and am hunkered up in bed, making the most of my vegetable status..

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With Netflix (Parenthood, Season 3…if you haven’t found this show yet, go watch it now) Gatorade (salt, to help blood pressure), chips (salt), and my adorable, fat, furry nurse (who is here for the chips as much as for moral support).

 

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My illness is a very rare and unknown condition, even among the medical community. The average time it takes for a diagnosis is 5 years (mine took over 7). It is called postural orthostatic tachycardia syndrome (or POTS) and for those of you (most of you) who haven’t heard of it, it is essentially a heart condition that means my heart is weak and has to work twice as hard to pump blood, especially when upright. This leads to tachycardia (rapid heart rate) which equals dizziness, fainting, seizures, and all sorts of other fun things.

For more information, check out: http://www.dinet.org/index.php/information-resources/pots-place/pots-overview

How Writing Saved My Life

I have debated whether or not to write a post on this for some time, but am finally relenting. When I decided to start this blog, I knew I didn’t just want it to be a fluffy, happy, light blog about writing and trying to become an author. I wanted to be honest, and not just write about the happy, pretty things. I wanted to use this as a platform to talk about the difficult things too, the things people don’t always like to talk about. It may be early on to dive into it this heavy, but regardless, here it is.

More or less this has been the most difficult week of my life. Not only did another episode of illness knock me out for a week, but as I was starting to feel better I lost someone close to me, in a completely unexpected tragedy. Now I am not telling you this so that you can feel bad for me. As I am going through this difficult time, I am realizing again what an impact writing and art have on my life, and I know that I am certainly not alone. I hope that for anyone else going through trials right now, this can be helpful to you.

A while ago, my friend and author Lindsay Cummings posted a video with her testimony, titled How Books Saved Me (you can watch it here: https://www.youtube.com/watch?v=EhZsgDNGtug). Our stories are nearly uncannily similar, and it was part of the reason we became instant friends. I have been chronically ill for most of my life, and was undiagnosed until about a year ago. My last two years of high school were when my illness was at its most severe. It started when I became sick with mono–which I would find out later often triggers postural orthostatic tachycardia syndrome, or POTS. I struggled with extreme dizziness, weakness, and twitching (which I now know are all part of POTS) and most days I couldn’t walk, even the few feet to my bathroom, without help. I was literally trapped in my bed for three months, and as a 15 year old junior who had just moved to a new state, this was about the worst it could get. My fledgling friendships quickly died off when I disappeared from school, and even my friends back home whom I had grown up with eventually lost contact. Outside of my family, I had no human interaction. I could not have been more alone.

Even as an introvert, this was incredibly difficult. I am a very independent person, so to be entirely dependent on others for everything was hard. Outside of sleeping 16 hours a day, there was little to occupy my time. I felt alone, useless, and completely worthless. With no diagnosis and no foreseeable cure, I couldn’t see an end to this hell. I was a vegetable. How was this life even worth living?

Though my condition was not life-threatening, I felt like I was waiting to die. At that point, I would have welcomed it.

(There’s a happy ending to this, I promise!)

Enter: writing. As I’ve said before, I’ve been writing my entire life. It was certainly nothing new to me. But one thing depression does is suck all the enjoyment and love for your passions and hobbies. I was plagued by the ever-blinking cursor at the top of a blank page. Anything I did write felt dull, lifeless, and boring. Worthless.

But after three months, I had run out of Netflix movies and Friends reruns, and I was losing my mind. So I began to write, and the words spilled out of me like somewhere a levy had broken.

They were messy. They were dark and ugly sometimes. I wasn’t writing because I wanted to be an author, or even because I wanted people to read it. I was writing for myself. Though I didn’t know it at the time, through writing these characters, their story, and their emotions, I dealt with mine. It was more healing than any therapy. Through untangling the mess of their lives, I untangled mine. And before I knew it, I was staring at a blinking cursor at the end of a finished book, and something changed. I had accomplished something. I wasn’t a vegetable anymore. I wasn’t worthless–I had written a book. I was a writer.

This moment felt worthy of fireworks and endless ice cream (there weren’t any fireworks, but plenty of ice cream) but it was more than that. I had reawakened something inside myself. For the first time in months, I felt alive. 

I eventually improved enough to where I was no longer confined to my bed (thank God) but through the roller coaster years of illness, doctors, and hospital visits that followed, writing has been constant. I have gained and lost friendships, struggled through school, and been through more than my share of boys and breakups. In my crazy, unpredictable world, it was an anchor, and it still is.

While I am in a drastically better place than I was a few years ago (I am diagnosed and coping with my illness, though it is untreatable, as well as managing college, new (much better) friends, and an amazingly supportive boyfriend) life always manages to throw curveballs. Sometimes, like this week, it knocks me off my feet entirely.

It gets better.

At that time, I couldn’t see an end. My uncertain future used to make me lose hope, but now it excites me. There are so many unknown surprises and opportunities just waiting! If you are ever at the point where you can’t see an end, please don’t give up. Find something you are passionate about. Painting, writing, music, LARPing, whatever. Something that reawakens you and makes you feel alive. Fight for it. Beat it. And come out 10x stronger.

And as I have learned this week, time is so precious. We don’t know if we have five decades left or five months. Though he died too young, Vincent lived every moment of his 30 years on this earth to the absolute fullest. He was an inspiration and role model to me, and still is. It may be cliche, but life really is what you make of it. Cherish the highs, each little moment. But also appreciate the lows, learn from them, and grow stronger.

Slow down a little this week. Take the time to watch the sunrise, or make a really good cup of espresso and enjoy it instead of inhaling for the jolt of caffeine. Open a door for someone. Walk in the rain. Hug someone you love, a little too tightly.

Time is precious. Art is one of the great gifts we get to experience in this world.

It may even save your life.

 

And now that you know more about me (maybe entirely too much), I’m curious to know a little about you. What are you passionate about? What impact has art had on your life? What have you overcome, and what or who inspires you?

Share this post with someone who needs it, and spread a little love this week.