Being A Spoonie

I’ve been chronically ill my whole life, but I’ve only been a spoonie for about two years. If you’re a healthy person, this may sound like a lot of gibberish to you, but don’t worry. There’s a perfectly reasonable explanation for my obsession with kitchenware.

You see, a spoonie is simply a person with a chronic illness or disability that identifies with The Spoon Theory, written by Christine Miserandino about her experience with lupus. Since a lot of disabled or chronically ill people have similar experiences, her way to explain being ill rung true with a lot of us.

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Being a spoonie is more than just being ill though. When you take up the spoonie label, a whole new world opens up to your sick self. Spoonies are, as a friend once said, “the coolest group of people you never want to be a part of.” And it’s true. Being a spoonie means having a support group, both across the internet and many times in real life, that’s available at any time and has experienced almost everything you’re going to go through.

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Other than community, being a spoonie means having an easy way to explain your chronic illness to healthy people. Because seriously, healthy people, we love you- but sometimes you just don’t get it!

When I’m searching for a way to make my husband or friends understand, I can send them a link to the spoon theory, paraphrase, or send them, phrase in hand, to the almighty internet. Sure, the spoon theory doesn’t work perfectly for all aspects of my illness, but it’s a good place to start explaining.

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There’s a lot of great reasons to be a spoonie- last but not least because it’s a lot easier than typing “chronically ill” all the time- but there’s more to it than that. Being a spoonie has made me more friends than any other movement or community I’ve joined. Being a spoonie has helped me accept my illnesses, and work with them instead of constantly fighting to the brink of exhaustion. Being a spoonie has given me the drive to advocate and educate about my rare disease. I’ve been able to help newly ill and newly diagnosed people find their way into the spoonie world.

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This week is Invisible Illness Awareness Week. I’m pretty aware of my illnesses, but there are a lot of people who aren’t. Awareness is great! It helps get us money and research for the illnesses we fight. It helps other people recognize their symptoms and get a correct diagnosis that otherwise could take years. This week, if you’re a spoonie, I challenge you to share your story. If you’re not, I challenge you to educate yourself about the unique challenges the chronically, invisibly ill face. And to all of you, I challenge you to be kind to yourself this week. You deserve it.

Chronic Illness isn’t Cute

Everyone reading this is beautiful in their own right.  I’m a huge proponent of natural beauty,  and I rarely wear makeup. But after years of dealing with chronic illnesses, I know as well as any of you that sometimes, it’s hard to feel cute when you’re ill. Puffy florinef or prednisone cheeks, weird connective tissue disorder scarring, those dark circles under the eyes- and these are only a few of the things I notice when I look in the mirror. Throw in some chunky joint supports and my compression tights? I feel like a walking disaster.

I fimd self care so incredibly important because of this. Taking some time to pamper myself, put on some makeup, a cute outfit, and take some selfies? Some days thay works as well as calling my therapist. Some days it doesn’t,  of course, but hey- I’ll take small victories.

My favorite thing to do when I’m feeling down and ugly is take a relaxing bath. Burn a spa candle, add some pain-relief soak (bonus if it smells good), and relax while reading a book and sipping om some powerade so I don’t pass out. But not everyone can do this, so here are some other suggestions:

-take a walk, or go for a drive. A change of scenery can be just what you need if you’ve been stuck inside.
-do your makeup! Whether you want to go simple (a bit of mascara to open up tired eyes, sneakily applied blush makes your rash or flushing look intentional) or go for a full-on glamour look, the concentration for makeup can take your mind off your bad day, plus you’ll look fabulous at the end.
-Cook some comfort food! Or order in. You deserve it. You always deserve it.
-watch some movies, especially something funny. Nothing cheers me up like a classic Disney movie.
-Call or text a friend. I’m fairly sure studies have shown that talking to friends and family can lift your spirits. If they haven’t,  I’m sure it probably can’t hurt.
-get out of your pajamas. Even if you only put on “real pants” to go to the mailbox, it can be nice to pick out an outfit and try it on!
-read! Whether it’s your favorite blog, a news article,  or a novel, it gets your mind off whatever for a bit.

Obviously not everyone can do all of these tips, and that’s okay. You have to find what works for you! What do you do to get your mood and self-esteem up while dealing with chronic illness?

On Migraine (And Other) Triggers.

When you first find out you have an illness that has “triggers,” it can be really overwhelming. Whether it’s IBS, chronic migraines, asthma, or something else altogether, the first thing you do after being diagnosed- if you’re anything like me- is start googling all the things that can trigger you. It gets overwhelming fast. At first glance, it looks like anything can trigger a migraine, or a fibro flare. But that’s not exactly true.

The truth is, you have to find what works for you. Maybe you do have some common triggers, like wheat or stress. But you might also have some off-the-wall triggers. For example, two of my triggers are wearing scarves and having long hair!

If you’re newly diagnosed, don’t get stressed out trying to avoid everything on a list you’ve found. Take it one step at a time. Remember that some triggers won’t always cause the same reaction, and sometimes may not cause a reaction at all. Remember that your triggers can change. And most importantly, remember that you know your body better than anyone else. If you think that your purple tie-dye bed sheets are the problem, try finding out!

If you’re not newly diagnosed, then this still might be a pertinent reminder. It’s easy for me to get frustrated when something that has never caused a migraine or a flare before suddenly starts giving me horrible vertigo and hives. It’s easy to get frustrated when I can’t pin down what’s caused a constant migraine for three months. In times like these, I have to remind myself that I will take my illness one step at a time. I will find out my new trigger. I will get past this flare. I will continue tracking my symptoms in relation to white cherry powerade consumption and pray that my favorite source of hydration isn’t causing my misery. Being chronically ill is tough, but I am tougher.

How do you feel about trigger lists? Do you have any weird triggers? Do you use a migraine tracking app?