Autoimmune Disease

Stone.

In the past, I’ve walked through the grocery store, mall, etc.

feeling, hours into the errand,

as if my feet were walking behind my upper body,

just trying to keep up with myself, trying to keep up with everyone else.

At this point, I’m dragging 80lb sand bags by each ankle.

Spaghetti  Am I even controlling their movements anymore?

“My legs aren’t going to make it! I need to sit! whew, ok there’s a bench…. they passed it?! Am i the only one dying right now? I have to make it…I can make it… I can. *deep breath*.”

 

My husband told me that it’s as if

I “am telling my mind over and over again to “go,

Go! You got this!” in every sense of encouragement,

But [my] body becomes defensive against my mind…

Saying

No.

 

Yesterday, I drove to get a flu shot.

As i was waiting in line at the pharmacy, I had to lean my back against Brady’s chest because, after the short walk to the back of the store, just now having left the house,

My legs went all spaghett in me.

Wait… I just left my house… why am i already so weak to not feel that i have control over the muscles in my legs?

 

We got through standing (or, i guess, leaning), and sat down to wait for my flu shot…(thank goodness there was an open chair!)

The pharmacist called me back,

and I noticed I needed to

Ask another person to change their gloves before they touched me..

(he opened the nasty door with them already on, the nasty, pharmacy surrounded, walgreen’s door…. and I had SJÖGREN’S and CELIAC listed on my paper, which by the way, he did point out to me, so I’m not sure if he was trying to get away with something, or if he was just plain dumb).

I used to be bothered by asking people if they could change their gloves, or change the spoons out at chipotle… Maybe it was because

I don’t understand why people look at me like I’m crazy… almost like we aren’t speaking the same language… sometimes it seems to offend some people.

But,.

For goodness sake, man! You’re about to put a needle in my arm! With your nasty freaking gloves? I don’t think so. I’m already in the “sick zone” of the store…

don’t add one more germ please…

 

My body is eating itself alive. I don’t know how I could feel so badly.

Sjögren flare.

Fibro flare.

Mono continues to hate my energy level.

A cold? Seems like it. Who knows anymore?

Lupus? Rheumatoid arthritis? Sjögrens stage II?

Something completely different?

 

We have company this week. Maybe it’s a stress factor?

Brady, now, is the only one who constantly is behind me, helping me.

He actually feels like I push myself too much sometimes…

I’m not sure what type of vibes I’m putting off, or if I look like I’m struggling with every movement,

I try to hide it,

but he knows.

 

Body raging on itself.

Finally feeling content in the silence now – some soft music in the background.

Please don’t talk to me.

 

Yes, I’ll be your friend.

 

Wait – Stop!

You’re playing with my heart again –

it was broken before you stole it  –

But you dropped it anyways… Again.

 

Brady deserves more than this.

We’ll be fine. It’ll be ok.

And soon, we will be strong again.:

So many strong women begin as broken girls.

So much on my mind;
I think I think too much.
Read between these lines –
unspoken weight of words
But time comes to rest when you are by my side – it blurs.

And I will follow where this takes me,
And my tomorrows long to be unknown.
When all is shaken, be my safety.
In a world uncertain, say – you’ll be my stone.

Change in every wind –
The sands of time don’t know our name.
Oh, nothing’s sure, but surely as we stand:
I promise I will stay the same.
And I’ve never seen forever,
But I know we’ll remain.

And I will follow where this takes me,
And my tomorrows long to be unknown.
When all is shaken, be my safety.
In a world uncertain, say – you’ll be my stone.

Oh, steady me, be my source of gravity.
While my world’s unraveling,
Say you’ll never change.

-“Stone” by Alessia Cara

 

❤️🦋☀️,

Bailey

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