Tonight was one of my designated shower nights. This means that the time that my carers are here is extended so that I can have a shower. Tonight I chose not to have a shower.

This is, of course something I’m allowed to do. I’m an adult, therefore allowed certain choices over my own care, within the restraints of the current care system, where I am. Yes, that last sentence was more of a Reminder for me than it was providing information for you.

But anyway, the point is I chose not to have a shower tonight. This means that I lose out on one of my appointed showers for the week. I cannot just have an extra one on a different day because I decided not to have one tonight. And I know this, I don’t like it, but I know it’s my reality.

So before I decided whether to cancel a shower, I look at what I’m doing between now and my next shower. I do this to try and determine how important it is that I have a shower. As I think you can tell, I decided that it wasn’t that important tonight.

Now, I know I’ve said this before, probably more than once. But when you need Carers, when you need other people to help you, the choices you get are limited.

The freedom to do what I want exactly when I want to do it, is again inaccessible to me.

This is one of the forms of an inaccessibility that I understand in the world. I don’t like it I don’t think it should be that way, but I do understand why it is. When care needs to be provided to a great number of people as part of a service, exactly when that Care is provided and how long it takes, and how many people are needed to do it, has to be decided on in advance. To make sure that everyone receives the care that they need. Like with any job, deadlines need to be met.

I hope I’ve said enough on this for that to make sense. I don’t really want anymore, the specifics of Care as a job at the moment, as I’m struggling emotionally, a little bit with this right.

Overall, I have mixed feelings when thinking of myself as a job for the people. Sometimes the formality helps, I feel like of a burden, when I know someone is getting paid to help me. But sometimes I feel like it reduces my life to someone else’s job. Like I don’t matter outside of that role. Like my needs and not important except to provide a paycheck to others.

But as I’ve said while I don’t like it, I understand why the system exists the way that it does. But that does make free choice of in this example, when I shower, inaccessible to me. I’m never going to be able to have a random shower at 4 am just because I fancied it. Or have an hour long shower where I just sit under the spray and feel the water.

And I know not having these decisions seems like a minor problem. Why would I want to do these things anyway? Honestly, I probably never would. But the difficult part is that the choice isn’t mine.

The choice is never going to be mine, not completely. All these little random things that you might choose to on a whim.

Making food in the middle of the night.

The random urge to clean, which frustratingly do you get, but I cannot act on.

Not being able to sleep in the middle of the night, so wanting to go for a walk, again, I get the urge to do this, but can act on it.

These little acts of freedom. The last minute experiences. I’m never going to get.

And in reality, the individual choices don’t mean a lot. But the lack of choice can be very emotionally draining.

I apologise if this post assumed a little little bit repetitive. I got caught in the emotion of its all and lost my way a little.

Additional disclaimer. The majority of this post is written using speech to text. Let me know if there’s any massive errors which have resulted in you not being able to understand any part of this and I will fix them as soon as possible. As I’ve said before please only point out mistakes, that effect understanding