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The Ugly Flare Thoughts

We all have them.  It’s okay to admit that.

For me it feels like every other week is a flare. I’m not even sure how that is possible, but it is and it’s not fun.

I’ve begun jotting down some of the thoughts that go through my head when I am stuck in bed riddled with pain. Maybe you can relate?

This is it. I’m going to die. This pain has to mean I’m dying.

How is this amount of pain even possible?

This is it.  This is my life now.

How many heating pads can I have on how many body parts at once?

Am I maxed out of meds now? Or can I take more?

My bed and my body pillow have taken me as their own. We are now in a polygamous relationship and I’m okay with it.

I feel like my teddy bear is the only one who gets me.

I can no longer cry. My eyes are swollen and I have no more tears left.

When was the last time I showered?

I’m not going to shower today.

I don’t remember what outside looks like.

There is an outside, right?

Life is pain.

Breathing hurts.

Either I sleep all day or can’t sleep at all. There is no middle.

There is no comfortable position. There is only toss and turn and thrash and cry until you eventually pass out.

Why is my skin so uncomfortable?

When was my last good day? I had one at some point, right?

How long have I been in bed? 10 minutes or 10 days?

Come on, Netflix, I’m f***ing here! I don’t need this shit right now!

There will be another good day. There will.

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Finding the Bright and Shiny in the Dark and Twisty

Good Morning Friends!

I’ve already had a pretty terrible morning beginning with a migraine, that-time-of-the-month cramps, and continued by a call from my surgeon saying that there is scar tissue in my spine so I will need injections to hopefully settle it.

This has me feeling pretty dark and twisty (any Grey’s Anatomy fans?) today instead of my usual bright and shiny self! What has recently helped, however, was a suggestion from one of my Instagram friends telling me about this song called “Try Again” by Dilba. This is an artist I’ve never heard of but apparently it was a hit in Sweden and cowritten by my Spoonie Friend! Now this song is pretty uptempo and techno-vibey but the lyrics are spot on!

I hope it brightens your day, too!

It really made me dig into myself and pull me out of my “woe is me” head space.

Something that has been weighing on me lately is the notion that you can be both “dark and twisty” AND “bright and shiny.” You totally can, and I recommend it. I myself lean towards being “Bright and Twisty.” It’s healthy to be able to look at yourself and take the good with the bad (even when the bad seriously seems to outweigh the good), and be able to recognize and accept both.

Back to my Grey’s Anatomy metaphor, Meredith was never successful in being bright and shiny, was she? No. And do you know why? Because bad stuff happens.

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Meredith knew that you didn’t have to be happy all of the time to still be a well-adjusted human. You take the good with the bad and make the most of it when you can. Even if you have to fake the happy sometimes, you are still able to find joy where it is and love with your whole (dark and twisty) heart.

So how do we find the Bright and Shiny when the world is cloudy? How do we navigate the dark waters that even a Netflix binge can’t even rescue you from? I think it depends on the person.

But I will give you a (somewhat dorky, but hopefully helpful) lesson from my Pain Group last week.

This is called Thought Recording (stay with me here..)

We all have these Automatic Thoughts that are sometimes horrible and hard to shake. They seem to come on randomly at first and then can build and build over time. They can build a wall so high that you truly believe them so you cling to these thoughts so hard that it makes it almost impossible for good people or good thoughts to break through.

Let’s give an example:
Situation: I went out with a friend for lunch and had increased back pain for two days afterwards.
Moods: Angry (100%), Depressed (100%) Hopeless (90%)
Thoughts: This is hopeless; I’m never going to get better. I won’t be able to do things I enjoy in the future. My future is going to be crappy. My friends won’t bother inviting me everywhere…. etc.
Hottest Thought: I shouldn’t bother trying.

Now think for a moment… what evidence is there to support that hot thought? That the pain got worse when you did something. But what evidence is there against that thought? It was important to try something so you can learn what works and what doesn’t. The chairs were hard and uncomfortable so maybe bring a cushion next time. If you don’t try something you will miss out on things that make you happy or could help in the future. You are learning new ways to manage pain… etc.

There is so much more evidence against the thought than there is for the thought.
I know these thoughts come and they’re so believable and you don’t feel like doing this homework, but if you never take a close look at these thoughts you will not see the mountains of evidence against the hazardous ways you’re thinking.

Never forget you’re loved and supported. I promise you have at least one person on your side; me.

And you help my bright and shiny come out…. even when I’m feeling super dark and twisty.

If you have no idea what the Grey’s Anatomy references are about, I totally suggest watching it on Netflix! I could probably recite every episode. Yes, I have a problem.

Love and Spoons,

Courtney (aka Meredith).

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