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.

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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.