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.

Spoons

Wow, I cannot thank y’all enough for your amazing response and support to my last post about my chronic illness. It really, really means a lot to me. But I also realized how little some people understand or realize about chronic illness, so I thought it would be important to talk a little more about what it is really like.

First, it is unpredictable. I may feel relatively “normal” for a week or so, then the next week because unable to even get out of bed (like this week). It hits without warning, and without reason. I might take all the precautions to be healthy, avoid certain things, stay hydrated, etc. but that can never stop it from happening anyways.

Second, it is nothing like normal illness. If any of you have ever had a bad case of strep, you may know that feeling of being completely drained, where your whole body aches and all you can do is sleep. That is kind of what it can be like having chronic illness, only all the time, in varying degrees. Chronic means chronic. It isn’t going to go away, or even get better. There is no cure in most cases. I can’t get healthy by working out more or juicing or meditating two hours a day. Making healthy choices can help my symptoms, but it will never truly go away.

Third, everyone is different, and no one can judge someone else’s experience or illness. One person might look relatively healthy or normal on a day-to-day basis, like me. Another might have visible symptoms such as bruising, hair loss, or need for a wheelchair or walker. Just because I can look healthy, doesn’t mean I am or even am feeling well. On the other hand, just because they look sick doesn’t mean they are useless or less than anyone else. Oh, and not judging someone else also means no advice or solutions, even if they are well-intentioned. Instead, they usually come off more condescending and hurtful than helpful. “Why don’t you try working out more?” sounds more like “If you weren’t out of shape, you wouldn’t be sick.” Not to mention, see last line above.

The Paper Butterfly showed me this great explanation of chronic illness, called the spoon theory, written by Christine Miserandino of the But You Don’t Look Sick blog. You can read the full post here, but here is an excerpt that really breaks it down. It is a little long, but absolutely worth the time.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon.

When she jumped right into getting ready for work as her first task of the morning…I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs…Getting dressed was worth another spoon.

I stopped her and broke down every task to show her how every little detail needs to be thought about…I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?”

I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.

It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

If you are healthy, you can never truly understand what it is like to be chronically ill, and I am really glad you don’t have to. But having an open mind and being educated can be a step towards understanding what someone goes through, and being able to better support them. It really does mean a lot.

Worthy of the Week

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Hey all! Sorry I missed the post last week, as you may know I’ve been sick lately. But here is this Friday’s Worthy of the Week, a weekly breakdown of things worth sharing. If you like what you see, feel free to join in! Just post your link in the comments, and I’ll stop by 🙂 Check out the others here

Inspiration

These beautiful, haunting, surreal photographs.

   

The second two are by Kyle Thompson, who is a phenomenal photographer and artist, and more than worth looking up.

Issues

This week has been one of tragedies. Two huge celebrity deaths, Robin Williams and Lauren Bacall, and the ongoing violence in Ferguson. I think it is so important that we let Robin William’s death and suicide bring to light an often avoided topic–mental illness, depression, and suicide. I have heard many different reactions to this, varying from celebration to damnation, saying he made a weak, selfish choice and left his family behind. But I think a lot of people with that reaction have never experienced anything close to what it is like to wrestle with depression. For them, and everyone else, I have this video. I’ve also heard it compared to those who jump out of burning buildings–they don’t want to jump, but it feels like the only alternative to being burned alive, but the people on the ground don’t understand unless they have been in a burning building themselves. And this video captures something I think is so hugely important for how we deal with and talk about his death. Regardless of how you feel, he was an amazing man who touched so many lives, and it hurts my heart that he was in so much pain he saw no other option.

Words of Wisdom

Being sick and stuck in bed this week, I really felt this next one. I love books because they give me freedom, even if I feel stuck in this sick body.

INSTANT DOWNLOAD Mason Cooley Reading Quote by artkeptsimple

The Fog

It’s inescapable and suffocating, a fog that consumes me entirely.

No, I’m not talking about that fog–the killer horror movie kind–but the kind that is always inside of me, all the time. Its name is Postural Orthostatic Tachycardia Syndrome, and today it came out with a vengeance.

If you know me or are familiar with this blog at all, you’ve likely heard me mention it before. Honestly, I don’t talk about it very often because I try not to focus on it. I refuse to let my illness win, become a part of every aspect of my life, and suck the joy out of everything that I enjoy.

But today, it did just that.

Sorry for the past few days of relative silence, but I’ve had a good reason I promise. Normally, I’m good about “powering through” my bad days. I’ve been living with my illness for more than seven years, so I’ve gotten pretty good at managing it. But if you are one of my unfortunate comrades who have chronic illness yourselves, you are all too familiar with the fog.

I’ve been reading the Shadow and Bone trilogy, so I am comparing it to the Fold. A lot of days, I am able to summon enough light to pierce through the fog, just like Alina, but others, I don’t have the strength, or it’s just not enough.

Today was one of those days. After I was up all night being physically ill, my body is completely wiped. I slept for twelve hours, then napped, and still didn’t have the energy or strength to get out of bed. I haven’t been able to sit up for more than a few minutes at a time without feeling dizzy, let alone make it out of room or down a single flight of stairs. I didn’t even have energy to hold a conversation with my boyfriend or family, and spent the day more or less in isolation, but for my ever present cuddle buddy and sick day companion.

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It has been a long time since I have had such a bad day as far as my illness. But I am reminded, even now, when it is difficult to summon enough strength to write this post, that no matter how bad things are in this body, I can escape to a hundred others.

Being trapped in this bed can feel an awful lot like sitting in a jail cell–but books and writing are a portal to an endless possibility of worlds, and freedom.

This is why I love writing, and why I will never, ever stop being a writer. I can’t. Words and ink are like oxygen and blood to me. They are my light, to pierce through the fog and the muck of this life, no matter how dark it seems.

Reading Siege and Storm got me through today. For a few hours at least, I could forget the pain and discomfort of this body, and become someone else entirely, lost in a rich, vivid, fantasy world. What could be better than that?

The reality of my illness means that I cannot always push through, and I will have to miss out on things, sometimes things that I love. I’ve missed staying connected with the writing community, work, a party, and interacting with friends and family. Please be patient with me in times like this, and know that I have not forgotten about all you lovely people, I am trying my best 🙂

I will have this illness for the rest of my life, and nothing can change that until there is a cure.  In the mean time, though, books make life a whole lot better.

And with that, I am going to finish this book, and then nap for the third time today.

Worthy of the Week

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Hey all! Thanks so much for stopping by, here is this Friday’s Worthy of the Week, a weekly breakdown of things worth sharing. If you like what you see, feel free to join in! Just post your link in the comments, and I’ll stop by 🙂 Check out the others here

Inspiration

Art, as always. I think these pieces speak for themselves.

Breathless,Fine Artist Portrait Painting, Artist Study with thanks to Artist Danny O' Connor, Resources for Art Students, CAPI ::: Create Art Portfolio Ideas at milliande.com , Inspiration for Art School Portfolio Work, Portrait, Painting, Figure, FacesPassions- twilight 7005  Rikka AyasakiSaatchi Online Artist: Yuliya Vladkovska; Mixed Media, 2012, Painting "One sweet goodbye"  Want this for my home!

Issues

This week, I watched Lee Thompson Young’s funeral tribute on Rizzoli and Isles. It’s been a while since he passed, and he was in the rest of last season, so this was the first time being confronted with it. Wow. I was surprised by how much emotion I had for someone I had never met. Even worse, it was so hard to understand. For those of you who don’t know, he committed suicide. He was clearly successful and had a bright future ahead of him, and was much loved by his costars and everyone around him. But that’s the thing: suicide doesn’t make sense. Depression and mental illness don’t make sense. They are a chemical imbalance–there is no logic. And sadly, I think there’s still so much stigma. Hopefully, his death will show people that they are not alone in their struggle, that it is okay to not be okay, even when it seems like you should, and that there is always help and people who care.

Words of Wisdom

This week I’ve spent some more time sick and in bed, more time with emotions and feelings that I don’t know what to do with–and as always, I can escape to my writing. There is something almost magical about how healing books can be.

Reserved Item for butterflywishesllc by farmnflea on Etsy, $15.00

Worthy of the Week

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Sorry I missed it last Friday, I’ve been terribly sick and didn’t get around to it. But don’t worry! Here is this Friday’s Worthy of the Week, a weekly breakdown of things worth sharing. If you like what you see, feel free to join in! Just post your link in the comments, and I’ll stop by 🙂 Check out the others here

Inspiration 

Okay, I’m kind of in a forest and nature obsession right now, with my new WIP (title to be revealed soon). I just think forests have so much quiet, unseen story to them. If only trees could talk 🙂

"the woods are lovely, dark and deep . . but I have miles to go before I sleep." - Robert frost . . . nature. the ultimate source of inspiration. {junk gypsy co}     Image

Issues

You might have heard of the recent attention Miss Indiana got during the Miss USA pageant–but it wasn’t for winning. She was the “largest” contestant, and viewers praised her more average bikini body (though she’s still a size 4). I think this is great. I feel like the emphasis on ultra skeleton skinny is starting to give way (finally) in the wake of celebrities such as Jennifer Lawrence or Miss Indiana. Maybe if they start embracing their bodies (skinny, curvy, thick, and in between) women will start to do the same. Though I have never personally struggled with weight, it runs in my family, and I am very familiar with the battle. But ultimately, it’s about being healthy, and loving yourself, no matter what shape you are. (Also worth checking out, this fantastic spoken poem and song by Mary Lambert called Body Love)

Words of Wisdom

Being really sick again this week, for the first time in a while, forced me to be in bed all day. With nothing else to do, I turned to books and writing. It gave me a chance to remember why I fell in love with books in the first place. For me, writing is so much more than telling stories. It gives me a place to go when my body fails me, or the world is unfair, or life gets me down. Writing saves me. It is my escape. So this quote was kind of perfect this week.

INSTANT DOWNLOAD Mason Cooley Reading Quote by artkeptsimple

What’s Up Wednesday

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What’s Up Wednesday is a weekly blog hop created by Jaime Morrow and 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! 

What I’m Reading

I finished The Fear Trials by my friend Lindsay Cummings last week, and it was great! A quick read, and definitely worth it. What a great opening to The Murder Complex series (you can read my full review here).

I am still in the middle of reading The Park Service by Ryan Winfield, which unfortunately I’ve kind of lost interest in for now (don’t worry, I haven’t put it down for good, it’s just on the back burner. Still a great book, I’m just fickle when it comes to books)

While traveling this past week, I read a lot of Froi of the Exiles by Melina Marchetta. Honestly, I really didn’t like it for a long time, but kept it to read to help me sleep (sad but true). Then, somehow, some of the characters were just so intriguingly unique I was able to look past its major flaws. The jury is still out on this one, but I’m almost halfway through now.

What I’m Writing

As I’ve said, I’ve been working on a brand new (still untitled) WIP! So far, it’s going great. I didn’t think I could fall in love with another world and different voices, but I have. So far, the words have been flowing so naturally, and I get excited every time I sit down to write. I hope this can continue. 🙂 (if you want to read more about it, I’ll be sharing my journey under To Build A Story, and you can read the first post here)

What Inspires Me

As far as my writing, I’ve been inspired most by the new voices of my characters. They’re really what has made writing so easy and painless, kind of like they’re writing the story for me. I can only hope it stays this way 🙂

What Else I’m Up To

Illness has really kicked my butt this week. I went to California for my cousin’s graduation, and was looking forward to a week with my family where I could relax, enjoy the beach, and celebrate. My immune system had other plans. The second day I was there I became really sick, which only worsened throughout the trip. I was still able to participate in certain things, but most of my time was simply miserable.

After a visit to the ER right after I got home, I am doped up on pain meds, antibiotics, and cough medicine, and have my fingers crossed I can get better soon. The upside? The meds keep me better enough that I can write, and with all this time in bed, I’ve been writing a lot. I’ve also had a pretty good stretch of being healthy before this, so I can’t be too mad. Nothing lots of rest, medicine, and doggie cuddles won’t fix 🙂

Have a great week!