It’s okay to not be okay

I don’t look this cute right now and I’m not smiling because I’m frustrated with my body for not letting me to do what I want to do.


So why am I posting this photo? I’m trying to channel this girl’s happiness, self acceptance, and peace with her diagnosis. The girl in this photo is empowered to take care of herself and to listen to her body to do what she needs to do to keep it happy.

But today I’m not thinking about my body, I’m thinking about me. I have about 70 blog post drafts in my WordPress queue with words I’ve spent time crafting into sentences about ways to be stylish AND chronically ill and how to alter a skirt in less than 10 minutes and things I’ve DONE and things I’m DOING. But SLEEP. And fuckin cataplexy.

I hate not having control over my body. I hate that it gets in the way of doing the things I want to do. I hate that I have to think about it before I think about myself. And that’s what it means to me to be a #spoonie. It means that I’m always taking care of myself AND my body. We aren’t one. We’re an adult (me) and a tyrannical two year old (my body) whose demands always come first.

Today I’m sleepy. Today I’m trying to be okay with not meeting my goals. Today I’m trying to accept my body as part of me. And today I’m not going to beat myself up if none of that feels okay. Because I don’t even recognize the girl in this picture and ya know what? 👉🏼It’s okay to not be okay.👈🏼

Love,
The #narcolepsyprincess

8 Replies to “It’s okay to not be okay”

  1. Hello, thanks for sharing this – it’s good to talk about everything and anything that is on your mind. I recently ran my first half marathon for Livin – It ain’t weak to speak charity. I also attend Fluro Friday sessions to chat and help support others and raise awareness for mental health (and life in general issues). My blog posts will give you more info on both initiatives and might help you bit too, take it easy on yourself 🙂 x

    https://larasstory.wordpress.com/2017/05/19/fluro-friday-3-how-to-support-someone-in-need/

    https://larasstory.wordpress.com/2017/05/17/it-aint-weak-to-speak-running-the-sydney-half-marathon-for-livin/

    Liked by 1 person

    1. There’s no cure for narcolepsy/cataplexy but I started taking a new-to-me drug to manage symptoms that is AMAZING (https://curioussparkledirt.com/2017/05/08/xyrem-vol-1/). But I still have shitty days and yesterday was one of them. One of the big things I’m working on is being okay with my feelings, whatever they are. I try to be grateful all the time about everything and sometimes that feels disingenuous. Gratitude is great but I’ve started letting myself get frustrated and it feels good to just say “you know what? this sucks. and that’s okay.” I found unexpected strength and catharsis in acknowledging the truth yesterday.

      Like

      1. How does the drug manage the symptoms? I’m really curious!

        I wonder if there are any alternative methods that could help too. I have taken acupuncture for years and it’s helped me with a lot. Have you looked into alternate routes as well, now that you know what it is?

        Like

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