The Role of the ED in Managing Chronic Illness

Hello, my zebras and spoonies How are you today, I’m super glad that you’re here hanging out with me. So today I want to talk about the ED: its role and relationship with those of us that have chronic illness.

I frequently hear people talking about their experiences in the ED. There is a distinct dissatisfaction amongst the chronic illness community in the way that the ED handles our cases. I wanted to talk about some of the reasons that this happens, and maybe talk about what we as patients could be doing to maybe improve that relationship and to maybe avoid the ED.

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The Cost of Covid

Hello, today I want to talk about a difficult topic for me, and one that is political. I want to talk about COVID. I want to talk about some of the effects that it’s been having on my life personally, the effects that it’s having on our medical system, and the consequences that the nurses and other health care staff are dealing with because of individual choices that are being made.

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Is ADHD a Super Power?

Hello May zebras and spoonies. Thank you for coming in and visiting and hanging out with me today. I’m glad that your hare. Yeah.

All right, so today I’m going to talk about ADHD again, still, some more. One of the things that people often talk about is ADHD is a superpower. Yeah, I don’t buy into that. I personally don’t feel like my ADHD is superpower. A lot of my ADHD stuff makes me a hot mess. I mean, there are days that I sit here and I think to myself, “Am I really an adult?” because I don’t feel like I’m doing these things right. Let’s just be honest having difficulty paying attention and being impulsive and having dysregulation of your emotions is hard and it can be messy. It can make life complicated, and it just can make everything else in your life so much harder.

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042621-1446

Broken, scattered pieces

Laying strewn across the floor

Something missing and lost forever

I cannot no longer see my future

Or the person I was becoming

Now, I’m undone and something else

I am this diagnosis

This label that owns me

Stealing everything I imagined I’d become

And rewriting me without my consent

As my body cracks and crumbles

My hope turns to dust

Leaving me here to stare at my mortality in the mirror

Stimming

Hello, my zebras and spoonies. Thank you for coming and hanging out with me today. I am glad that you are here!

Today, I’m going to talk about some of the myths around stimming.

Well, first of all, what is stimming? Stimming is a self stimulatory behavior, and it is a sensation seeking that can ease feelings of anxiety, frustration and boredom. Some people find stimming pleasurable, or fun or relaxing.

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The Wall

One of the things about ADHD that many people don’t know about is “the wall.” Well, that’s what I call it anyway. I go on screech for endless days and seem full of an eternal amount of mental energy. Until I’m not. And it comes sudden. I just hit this wall and then all I want to do is curl up in a hole and hide from the world. This cloud of apathy swallows me up and I find it a struggle to get just the every day things done. A deep, aching brain fatigue washes over me. For some reason, the world doesn’t recognize “the wall” as a valid reason for an impromptu vacation from life for a few days so I have to continue to slog through and it completely sucks.

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042621-1451

It could be worse

But I wish it was something better

Burning pain

Branding me, scarring me, breaking me

In all the places you cannot see

I walk through the crowd

A spector of suffering unrecognized

Looking the same as those around me

And I wonder if they feel the same

Bitter, iron bars caging around me

Biting down into my bones

Seeping into the fundamental programming

Forever altering who I am

I clutch upon the thing with feathers

That perches precariously in my soul

I wish I could hear it sing

Letting the little bird go

I watch it fly away, fly away

And with a fragile voice

Begin to sing