Autoimmune Disease

The Great Unknown.

It’s hard when you hurt everywhere:

Chest, wrists, elbows, shoulders, hip, knees, ankles, head, skin, extreme exhaustion adds an extra ache. . . .

. . .heart.

“People are talking what you can’t un-know, and what you wanted wasn’t real at all. So many people never cross that road; staring out the window of a combat zone…

“That’s just life”.

“Suck it up”.

“You do what you have to do”.

“Everyone has something”.

“I know you need medication, but….”

Let it all out. Tell me how you really feel. Make me feel guilty. It’s fine. Tell me how most of it is in my head. Tell me how I need to think better and I’ll feel better. Tell me how I’m not making the most of my life. Tell me how I need something to look forward to. Tell me how I need to be there for my husband. Tell me what’s going to happen if he leaves me. Tell me why I’m not enough, how I’m not enough, that I’m never going to be enough.

“People are talking but you can’t be sure.. So many whispers at your own front door.And when you open up you lose that hope; now you start to wonder if you’re all alone…

Words have so many meanings behind what is truly said. I know it’s from love. I know these words are from good intention.

But..

The worst thing you can do to someone with a chronic illness, an invisible illness, a debilitating disease, is make them feel they have to prove how sick they are.

“So just hold on, driving through the valley of the great unknown, hoping that the headlights shine on. Everyone around you has a heart of stone, but you  just roll on…

What you may not know. . .

Without my make up, my eyes are deep dark and sunken in from sleepless nights, tossing and turning, waking up again and again, from the pain of it all.

Not so invisible.

What you may not know. . .

I’m unable to move from the bed, from the couch. I’m unable to find thoughts and words and sentences in my fatigued and fogged over head. More days than not, my dear husband puts me to bed early in the day, far before the sun is to set, and retires to his designated room to get away from it all.

Not so invisible.

What you may not know. . .

When I ready myself for bed so early in the day, when my bra comes off, it’s as if it never was placed on the floor, it’s as if it always stays on because of the bruise it leaves around my rib cage.

Not so invisible.

What you may not know. . .

The “medication” that I “may need” comes in the form of six different pills that are divided up: A, B, C, D, E, F.

Morning dose: A, B, C, D, E

Evening (Afternoon) dose: AA, B, C, D, E, F

Not so invisible.

What you may not know. . .

I’m losing my hair.

My once thick and envied pony tail.. 1/2 the amount of what it once was.

Not so invisible.

“Remember walking when you thought you couldn’t stand? Remember what it feels like. I know you think that they could never understand, but you don’t want to be right. And now you only want to make it out alive….

I put positive thoughts into my head daily, hourly, each second; but that’s not going to bring back the light in my eyes.

For me to make the most of my life, I have to survive each day. I know I’ve survived each day when I see my precious husband’s face. That’s something I look forward to.

I’m terrified of losing him. I’m terrified of him getting fed up and leaving, because he actually has that option. I would leave me if I could. This disease is the one thing that makes you want to walk away from yourself. How and why he’s still here is beyond me. But I can’t do it without him. Don’t make that fear more real for me. How cruel.

Tell me I’m being sensitive.

This is my life. You have the fortunate ability to judge me, to tell me what I’m doing wrong, how I’m living wrong. You have the fortunate ability not to feel this pain,not to live in this body. You have the fortunate ability to work, to have and raise children, to have a social life, to sleep each night, to care for your home.

But I don’t have that oh so fortunate and precious ability or choice.

This is my life. And I can’t walk away from it.

“Just roll on.” – The Great Unknown by Rob Thomas

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