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.

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.

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.

Maybe You’re Too Stressed Out

Crohn~ically Awesome

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..

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).

 

________

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.