Emotional Bandwidth When You Are Disabled

I’ve never considered myself a spoonie, but I think I’ve run out of spoons these past few weeks.

I thought I’d be riding shotgun today on a trip with a moving van to get the last of our stuff from the house to wherever it’ll fit.

Regular readers will know that I love road trips for the music mixes and uninterrupted reading time.

But the thing I can’t wait for this time, the thing that gets more like a dream every damn day, is the accessible shower in my old house. You guys, I’m traveling six hours to take a shower.

As I write this, the traveling part has been canceled. It would seem that named storms and closed roads don’t want me to bathe.

Let’s back up.

Every house that I live in, even level access ones, need adaptations for me to y’know, live in it. It’s not about the steps. It starts with steps, but it’s not about the steps.

We moved to a flat with a bath in it. I asked for a bath lift when I arrived, and yes, I expected to wait a while. After a week, I got a letter that says I’ll get another letter.

I sprayed more dry shampoo and contemplated joining the gym just to shower.

I went out in the rain, which helped. I called around disabled friends: We haven’t had coffee in a year, but do you have a roll-in shower? Love you, KTHANXBYE.

Thought about renting something. Cheaper to buy.

Sunday dinner at my Dad’s house, which could have been spent talking about things other than my personal care, involved looking at a bath chair that he found online, like new. One that he already picked up for me. Other daughters get, I dunno, other gifts. I get bath chairs. And other gifts.

But this time, we put the bath chair in the car. I couldn’t wait to try it. After all, bathing is a basic human need, right?

That night it got too late and the next I was too tired. From trying to organise more strangers to come in and y’know, help me do stuff. Like take a bath. More disability-related red tape. For basic human requirements.

When we first got here, I’d look in the hallway mirror before we left the house.

‘Your hair is frizzy like it always is,’ says the five year-old. ‘Let’s go.’

And we went out. To do normal family things. Like the school run, and shopping.

With every passing day, I feel more like Shrek. I share this with my friends, still online. They tell me I’m wrong, but y’know.

I share this truth-in-humor with people that know I’m a person, with people that don’t need me to quote a long series of numbers before they speak to me. We share GIFS and movie references, inside jokes, and other things that make us human.

Never forget we are human. What makes you human?

A few days ago I spotted someone in actual heels at the school pick up, and I kinda haven’t been out since.

Ironic that I can do more things outside this house now, but I don’t have the support in place to get anywhere. Yet. That’s another waiting list.

Neil comes home and we try the bath. But I’ve used a shower for five years, and so out of practice. And I need grab rails that aren’t there yet. I’m still on the waiting list.

And so, today. Yes, we were getting another van load, but I was also contemplating actually sleeping in the shower.

This post is not about a shower. It’s not a political statement. But maybe it is.

I’m tired today. And yes, maybe I’ve run out of spoons. My Cerebral Palsy, in and of itself doesn’t make me tired.

What gets me is the emotional stuff that comes with planning every move (anywhere, for anything) the access issues, the red tape, the intrusion of other people, even though I need those people.

Usually, I don’t have a problem with all this extra in my everyday life, because it’s my life. But sometimes I cling to who I am after the logistics of my life are organized, and I try not to forgot who she is.

The emotional baggage when you have a disability is a real thing It’s not our thing, it isn’t even our own baggage, but we have to deal with it.

It’s not about our bodies. I quite like mine.

It’s about the time it takes to match up what is there in the world and the hoops we have to go through to access what’s there.

The world starts in our homes.

There shouldn’t be a waiting list for equality.

But for today, I am going to the gym to shower. Don’t congratulate me on it.

In related news, here are some tips to de-stress that don’t involve walking, and more on the spoon theory is here.

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