I'm Scared

Hello dear reader. It has certainly been a while since I have written. The dreams and goals I had when starting this blog have changed over and over again. 

I've spent the last year and a half up and working as a hospice nurse. My experience with pain, nausea, fear and near death has been a useful tool. 

After all, I understand the slow imprisonment of one in their own home. It is a unique and terrible thing. To go from being an independent person to requiring full care. I never was 100% full care, but I required assistance in almost every task. 

I'm scared. I've had longer and worse flare ups lately. It got worse after I had burned out, working so many 50-60 hour weeks. I cannot believe I even did that...after being stuck in my home for years, and volunteering at nursing jobs that hated me. Let's admit it...they did. 

I'm tired of pretending differently. The first volunteer nurse job hated me. They felt I was lazy and unhelpful. It never mattered how sick I was, or how hard I was trying, I was seen as a whiny soul. I was as much of a burden as the repeat clients who brought the same drama in over and over again. 

I saw it in their eyes. The jokes I attempted revealed the truth. Once I said, "Oh, if I was well enough I could apply to be the main, paid nurse "

Ha!  You should have seen their expression. The look of uncomfortable horror was actually quite amusing. It was all I could do to not add "Thankfully, for your sakes, that won't happen."

So much for Christian compassion. I was as worthless as the poor souls who walked through the door searching for assistance. I saw on my cohorts eyes the same disdain that was showered on those who limped in with the same injuries to mind, soul and body as I had. 

I wasn't "good" enough. I was a nuisance because I was unreliable. Eight years I fought nausea, pain and fatigue to attend my position...I carried ziplock bags to dry heaven into...

But I wasn't "enough". 

I sometimes hate Christians. They....we...come across as stuck up snobs

They aren't the only ones, though. Many non Christians also treated me with disdain as I attempted to be involved in the community.

Inclusion and diversity my left foot. 

I'm terrified of my body going back to that state. Where I am a prisoner in my own home. What do I do? What else can I try to stop my diseases from taking over again. I feel the irritation rising in my job due to...what, failure on my part? Illness causing me to call in more and more?

I fear I am on a short leash. That any day now I will be let go. And I can't do anything about it. I have hit rock bottom. 

I can't take those judgemental eyes anymore. People telling me what I should eat or not eat. People reaching out to me, all friendly, after not speaking to me in months/years...just to try to sell me their cure all snake oil. I can't take people telling me what medications to take or not take. What exercises to do or not do. What their great aunt Sally did and she was just fine then. 

I can't take the expressions passed between one woman and another that screams I am not trying hard enough. That I am a nuscence. That I am whiny that I am pathetic and should just jolly well pick up my staff and walk. That if I had any gumption, any faith at all, I would be cured. 

I'm sick of it. I'm just flat out sick of being judged on my attempts to exist and be. 

I'm scared. I'm terrified. I can't live in a prison again, I can't stand the idea of being wound up in blankets, pillows, foam pads, with iced drinks to soothe the never ending fevers. Please, God, no. Don't let me end up trapped again. Please, please, let me live. Let me have this much. Please....don't leave me here on the road being kicked in the head by every other racer running towards the finish line. Please. Let me get up and walk. 

My patients don't believe me

My patients don't believe me when I say I understand. 

I know what it is like to see the same four walls day and night.

To watch the spider on the wall mend web with strength and might.

To watch the hours and minutes fall away with each sigh

Wondering how nausea, anxiety and pain could ever be this high

I know what it is like to have visitors come and go, come and go

The heartbreaking lack of invites; you'd not go anyway you know. 

The drop in weight, people encouraging you to drink and eat

Here, my friend, your very favorite treat

I know what it is like to watch life drip away

And the secret wish to sleep and never wake today

I know that the world shrinks down to symptoms alone

And how you never get any treatment for that ache in bone. 

How people mock you for backing out on dreams and plans 

While you clutch a nausea bag and listen to electric fans

I know what it is like to watch the clock. One more hour to go

Then more pills I can pop, and make symptoms to and fro. 

I know what it is like to wait on hold for hours

Staring at a calendar decorated with appointments and wildflowers. 

I know what it's like to have lost all hope, to scream when alone

Because at the end of it all, the disease waits sitting on his throne. 

He laughs his sickening laugh and mocking sneer

He knows the depths of humanity's disease ridden fear. 

I tell my patients I understand their prison in full breadth

For I have been there and back and also seen death

Every illness or flare rocks me to my very core

I beg God to not let me fall down to that well's floor

Let me walk, work, breath, I beg with tears down my face

I can't face that sentence again, please have grace 

My patients don't believe me when I say I understand.