Autoimmune Disease

Near.

I’d like to think your more near than far.

I’ll go over the 26 years that I’ve heard my story in your words, because on the 27th time, I won’t.

But DD just said “you are here for a purpose, and you be here. And you be here for you, and you be here for everyone else, because there will come a time that you can make a difference to somebody else – use your purpose!”

And that made me smile.

I guess mono wanted to pay me a highlighted visit this year. As if I didn’t have all of enough going on.

People will need you. But if people don’t need you, then why are you here? And sometimes people need you – and they don’t say they do.

I don’t understand why I need people more so when I feel like -yuck- than when I feel ok…

This time of year brings the “where do you want to go”s? and the “what do you want to do”s? – but for some reason, I’d rather go somewhere and do something on a day that you don’t feel obligated to entertain me.

I was born on October 3rd –

With

An autoimmune disease

That we were not aware of.

And nobody understands.

So prepare. I need to prepare my fever, raw and scratchy throat, viral ulcer covered mouth, fevered and achey body, fogged and lost mind, to ignore the:

“You’ll feel better if you just start getting ready!”s

“Come in its your birthday!”s

“You can drink this one day, you’ll be fine!”s

“Stand up, get your blood flowing!”s

And

“Ok we’re going, and we hope that we see you there!”s

I. Just. Want. To. Sleep.

To the right = make up.
To the left = “I woke up like this.”
Invisible illness. Not so much.
(These were taken about 4 days ago).

If I show I’m fragile
Would you go ahead and find somebody else?
And if I act too tough, know that I care bout you –
I’m honest, no offense.

No, I could never fake it,
Like players always playing.
Arrest me if I hurt you,
But no apologies for being me…

I just wanna be pure…
You know I’m terrible at putting up a show.
That’s what you wanted me for…?
So I get pissed off when you ask me to be more.

I just wanna be raw.

I just want to be raw.

Keeping up appearances,
But sometimes, all we need’s a little break.
Regret the stupid shit I say,
I hope that you forgive me any day.

No, I could never fake it,
Like players always playing.
Arrest me if I hurt you,
But no apologies for being me…

I just wanna be pure…
You know I’m terrible at putting up a show.
That’s what you wanted me for…?
So I get pissed off when you ask me to be more.

I just wanna be raw.

I just want to be raw.

That’s what you wanted me, that’s what you wanted me –
That’s what you wanted me for?
No, I just wanna be, no, I just wanna be –
I just wanna be raw.

Arrest me if I hurt you,
But no apologies for being me…

I just wanna be pure.
You know I’m terrible at putting up a show.
That’s what you wanted me for..,?
So I get pissed off when you ask me to be more.

I just wanna be raw.

-“Raw” by Sigrid

❤️☀️🦋,
Bailey

5 thoughts on “Near.

  1. People don’t walk in your shoes so they can’t understand, Bailey. Their are a selected few like myself, that don’t pretend to know the pain you endure, but we embrace you as you are. I do because I see your battle in the words you say here. You’re so open and soulful here and I don’t think that’s a side most people you interact with get to see.

    They don’t understand your battle so they know not what they do. Continue to hold steady, Bailey, and be the strong, lovely woman you are. 💙💚

    Liked by 1 person

    1. This post was difficult.
      First year of birthdays and holidays without my Mimi – who was the only one who got it – who, if she didn’t understand, it didn’t stop her from believing in me.

      And [insert your comment here]. Because you’re exactly right. I fake it until I make it because it’s impossible for someone to understand. Brady doesn’t even understand, and he lives with me.
      The other day, we went out to eat with his parents and grandparents (who had flown into town to see us, so I really needed to be present) for our birthdays. I cried the entire morning. Held my tears to get my make up on, but still had to reapply the powder under my eyes and mascara before walking inside their house. We opened gifts and went to outback to eat… and I cried the entire way to outback in the car. It was just Brady and I.
      The tears came from over exhaustion, but they mostly came from pain. I cried all day, but sucked it up in front of them because i knew this was important to Brady. And I’m exhausted from the effort it took. His birthday is Friday. And I got to be honest, I’m terrified of not getting enough rest. He steals the bed for the day, I don’t rest well if I’m focused on being quiet, and I sleep very little at night. Never good rest. I can’t remember the last time I woke up refreshed.

      Even after that day, he was mad when I told him I wasn’t sure I could go do anything with him for Friday.
      It’s a birthday. We’re 30 years old (27 for me) but it’s just a day now!!!
      I’m depressed this year, it’s around the holidays, without my Mimi for the first time, I’m exhausted, my medication hasn’t been killing my pain…. thankfully they fixed that. The doctors want me to go into a Sjögrens Syndrome study for a year to gather research since so little is known about it. Ugh.

      Trey,
      My ex contacted me and told me that he read my blogs and he said that he could feel the pain in my words too. I internalize all of it. Because I know what it feels like to be hurt and upset and depressed and confused… and I want to make people feel the exact opposite of that.

      It’s funny because if you ask anyone that i graduated high school with it describe me with one word, guarantee “bubbly” would be the majority. Leave people happier than when you met them. Always been a motto of mine.

      I would never expect anyone to understand.
      It’s so frustrating. I wish they could. But I wouldn’t expect it.

      I just have to get it out. Some people run, some eat, others workout, some read books… I write. 🤷🏻‍♀️

      Liked by 1 person

      1. Write it out, Bailey. It’s my favorite form of expression other than music. Rest is so important and I know what it’s like to be without it. I somehow manage to work all day off of 3 or 4 hours of sleep nightly. Maybe you should get another bed in a second bedroom just for you to rest in if you don’t get sleep the night before. That way you’ll be in whole other room and both you and Brady will be able to rest undisturbed.

        Sorry you have this feeling of being alone. All I can do is reassure you that you’re not and I’m always happy to lend a helping hand/ear/eyes whatever to help take away that sensation.

        Birthdays start to become another day after 30 until you get to the 40 and 50 mark. That’s how people view it socially anyway. If you do manage to fight through this one and go out, I don’t think you’ll have to worry about going out for another bday for quite a while, maybe.

        Take care, Bailey. Remember Im here for you to help fade away the loniness. 😎😊💙

        Liked by 1 person

      2. So much has happened in 3 days. I keep finding songs that fit my certain situation now, but I’m scared to write what I really want to. Just out of fear for ACTUALLY BEING alone. Not Brady. Brady has been so wonderful.

        There was basically a type of surprise bday party that my family threw for Brady and didn’t invite me to. Ummmm. So that was great. And now I’m supposed to apologize. And my mom “isn’t ready” to talk to me.

        It’s them that make me feel so alone. They make me feel like I’m wrong, like I’m their “trash can” to throw away their negative and hurtful words into and then they go back living the way they do…

        Brady doesn’t make me feel alone. My family does. And that’s so hard.

        But Brady did buy a super comfy couch that’s eaaaaaasy to nap on so that helps the sleeping situation. I wish we had enough bedrooms so that we could make your idea happen!!! Haha!

        I need to write a post. I feel it just building up. I just am trying to find a way to go about saying it with the correct words.

        Thank you so much, Trey. I hope all is good on your side??? ❤️☀️🦋

        Liked by 1 person

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