Incontinence

On By Katy DalyIn My Disability Truth4 Comments

I’ve been peeing on myself my whole life. Sometimes it doesn’t bother me, sometimes it’s the most annoying part of my disability, and I can’t tell which it’s going to be until it happens.

It’s hard to have a problem that society only views one way. To know that because of things I can’t control there’s always going to be some people that don’t see me as an adult, and I can’t change that.

I’ve been asked periodically about whether I would still be disabled, if I had any choice in it. And the truth is, I don’t know. My disability is a massive part of my existence and I don’t know who I would be without it. But one thing I know for sure is that I wouldn’t be incontinent if I had a say it in.

It’s not even the physical aspects that put me off here, though they’re not great. It’s the emotional and social aspects of incomtinence that are the hardest.

If you’re wondering what prompted this post, I’ve peed on myself today. I’m saying it on here, not only to make myself feel better, but also as a reminder that it happens and it’s okay.

Adulting

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There’s lots of different types of grief, and we all have to deal with it at some point in our life.

As well as the obvious and social accepted form of grief, I’m dealing with other kinds right now. I’m trying to deal with it all, as well as all the other parts of adulting.

The more I adult, the less I want to. I’m really relating to this quote right now.

Image Description: A two frame scene from Greys Anatomy, the quote in the frame says “We’re adults. When did that happen? And how did we make it stop?”

Sometimes all you can do is your best, and that just has to be enough. I just wish it felt like it.

Sleeping in my chair.

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This is where I’m spending my night tonight. It’s not good for me but it’s worth being able to spend time with my siblings. But that’s the way it has to be sometimes, when you live in an inaccessible world. You have to be the one to sacrifice to spend time with the people you care about.

My chair cut out randomly today.

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Video Description: The video is of me in my electric wheelchair on the ramp outside my house. I am waving as I speak.

So this wasn’t the post I was planning to scare today. I’m still of two minds as to whether it’s time to start writing on this blog again yet. Does anyone else get the feeling after you loose someone that’s it to soon to start getting on with life? But at the same time it’ll always be to soon and you’ll have to start getting on with things anyway?

Today my chair cut out on the ramp outside my flat. It has temporarily been fixed and I am waiting on the engineer to get it fixed properly, so don’t worry I am no longer stuck on the ramp. And thankfully I had people that were able to help me with this situation.

But it kind of ruined my plans for the day. Which was only going to get my flu vaccine, so it’s not the end of the world, but still. It’s really frustrating when something to do with my disability ruins my plans for the day. It reminds me that I’m not really in control of my life, my condition is, or the technology I use is, I suppose.

This is the reality of a life spent relying on technology. Some of us have no choice in our reliance, but that doesn’t stop the technology being fallible. Something can always brake, something can always go wrong. And it stops my life in its tracks when that happens.

When it happened in all honesty I just didn’t know what to do, because it had never happened before. One advantage of this, other than at least for today not having to get jabbed in the arm, is I now know what to do if this happens again, though obviously I hope it doesn’t. And it happening today it’s not the end of the world.

My chairs being fixed now as I finish this post. But here’s an important reminder if you or someone you know is reliant on technology to live there day to day life. Technology will have faults. It will most likely stop a person being able to do what they want to with there day from time to time. It’s not their fault and they feel bad enough about it, so don’t make them feel worse about it.

My dad died a month ago today.

On By Katy DalyIn My Disability Truth4 Comments

If you’ve wondered why I’ve been away, that’s why. And coincidentally today is the day I find myself wanting to write again.

It’s difficult after someone dies, not knowing when the appropriate time to start your life again is. But one thing I have noticed that is different with loosing my mum than loosing my dad, is that my life started again much sooner, it had to.

When my mum died my dad was there to do all the things that needed to be done. My dad kept life going and we got to grieve a little more. But when my dad died those things fell to me and my siblings. And we had to pick life up and keep it going.

There’s a lot of mixed emotions when someone dies, and loosing my dad has caused such a dramatic change in my life that it’s caused a lot more. I suddenly have the responsibility I’ve wanted for a lot of my life, I’m suddenly needed in a practical sense to do things.

It’s strange.

I’m an orphan now.

But at the same time I’m suddenly an adult.

We’re yet to have the memorial. I’m kind of worried what happens after that, when it’s all done and this is just life now. But I guess we’ll cross that bridge when it comes to it.

Lying.

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

What personality trait in people raises a red flag with you?

Seems pretty obvious I know, but it’s hard to trust a liar.

It’s the little lies that really bug me, and I often can’t verify due to my disability. But it leaves you doubting people and not being able to verify anything.

Just tell people the truth, especially when they trust you, especially when they have no choice but to trust you.

This is difficult to answer right now.

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Describe your ideal week.

I would love just to go to spa, to be somewhere warm with good food and lots of dogs. Somewhere I could be completely alone and independent, and at least right now, somewhere I wasn’t disabled.

This is what makes the question so hard for me to answer right now because not only is it reliant on lots of things being different than they currently are. It’s reliant on fundamentally not being me, at least right now.

This is how living with a disability works and disability pride works. it’s not linear. Pride is not linear.

Sometimes it’s really difficult to be happy with who I am and the life I have to lead. And that makes it very difficult to picture my ideal anything, when it all seems really far away from me.

I think my ideal week would just be me being happy, comfortable, not in pain and independent.

Nobody puts baby in the corner.

On By Katy DalyIn Blog1 Comment

But sometimes it’s best to put me in the corner.

And that’s just the reality of living in a society where 99% of the homes are inaccessible to you. But you still have family, you still have people you wanna spend time with especially unimportant dates, like today was for me. So you allow yourself to be put into the corner to be out of everyone else’s way.

To be fair to them, it was the best place to put me to give me the best view of the room. But it did feel very very much like I’d be in the way if I was anywhere anywhere else. So is it really a choice then, if I feel like like I have no other options?

At least I got to be involved. At least I can get in the house at all. At least I was some consideration when they were looking for a home. Even though I do have to go up and down a very dodgy and frankly scary ramp to get in and out. At least I have some access which is better than none.

I worry that I’m never going to feel as if I belong anywhere. Even in my own home but especially in society as a whole. And being in someone else’s house is just a reminder of that.

I know it’s wrong for me to make their home all about me. But I also feel like I have to think about about me because someone has to think about me and the rest of society has failed to do that. But can I judge the people I care about about, the individuals themselves for the home they choose, when the majority of homes are inaccessible to me to begin with.

The answer is it would not be fair to. And yet I wish I could, I wish it would be fair of me to blame someone sometimes for how inaccessible the world is to me. Not just be mad at the somehow non-existent yet also everywhere “society” that is to blame. People caused the ableism I am forced to live with, and yet in most situations I can not be mad at people for it. I know why but at the same times, it makes absolutely no sense.

But at least I can get in the home of the people who I care about. Despite my the fears and difficulties and only being able to get in one room. At least I was a thought, right? And something is better than nothing.