Tag: Disabled People

Even when I sleep I’m tired.

On By Katy DalyIn My Disability TruthLeave a comment

I’m writing this post at 2am the following day. It will be backdated.

I woke up after sleeping for 7 hour, still tired, in a wet bed. Incontinence sucks, let’s just leave it at that.

I’ve slept so much recently and it hasn’t made me any less tired and that just makes me sad. Fatigue is an overlooked problem in society. People thinking being tired isn’t that bad but honestly it’s hard to deal with.

Struggling now as I know I’m not going to be able to shower tomorrow. And I will definitely be tired all day today, even more so because I woke up at 2am.

Wealth is relative.

On By Katy DalyIn My Disability Truth2 Comments

I spend a lot of time just scrolling on various internet platforms, and if there’s one thing I’ve learnt, it’s that wealth is relative.

Seeing people complain about the price of things they’ve inquired about, that I don’t even have the money to look into, is a wild experience. The price of getting a swimming pool in your garden has gone up, oh I feel so bad for you.

Sorry, I know this is a very cynical post. And while I’m a strong believer in people’s right to do whatever they want with their money, sometimes the reality of this is just difficult to witness.

I think it’s because I know that society is going to keep me poor. Don’t get me wrong I live comfortably, but I am never going to have the kind of disposable money needed for a pool. I know those that do have the money have worked hard for it, and they deserve it. But I’m not even getting the chance to work hard to change my situation. And sometimes that just gets to me.

I know compared to some I have a lot of money, but compared to others I know, I have nothing. And I feel like I’m constantly torn between it could be worse and why isn’t it better.

I don’t know where I was really going with this post, as it goes against what I believe to differ that people couldn’t talk about there problems just because it could be worse. I guess I’m just airing my own problems and that’s that.

If it wasn’t obvious, if I win the lottery, which I do not play, I will be getting a pool, or a jacuzzi.

Cyril controls more than I wish it did, but I’m trying.

On By Katy DalyIn My Disability Truth, Writing Prompts7 Comments

If humans had taglines, what would yours be?

If I tell you that Cyril is the name I use to describe my cerebral palsy, this tagline should make sense.

Naming my cerebral palsy helped me to separate it from myself, and find who I am outside of my disability. But I still often feel trapped by my disability, though I’m trying to make the best of my life.

It’s hard living your life knowing that you will never get to live the life you feel like you should have had, and knowing there’s nothing I can do to get that life.

If I’m being completely honest with myself, I feel like my disability robbed me of a better life. And logically that’s just sad.

Sometimes all you can do in life is the best you can do, and that has to be enough, I guess.

Starting regular medication.

On By Katy DalyIn My Disability TruthLeave a comment

Before I get all weird about this, I’m going to say it’s just eye drops, so it is really me being a little be extra about all of this. But this is my blog, so the only place as I get to do that.

All my life different medications have been pushed on to me. This is the standard treatment for your condition etc. So as soon as I was old enough, I decided that I would not take any medication or anything like that until I understood exactly why I needed to take it. This for me extends to creams, drops, painkillers, muscle relaxers, anything.

To be clear I’m not against medication, I will, and have taken antibiotics. I will finish the course. I will also take painkillers and muscle relaxers if I deem them necessary. But taking preventative things is not something I like to do.

Muscle relaxers for example, work best when taken regularly. But it was hard for me to take them regularly when there were days when I wasn’t in pain and it just seemed silly for me to take them. Specifically where muscle relaxers are concerned they would make me drowsy and as I already have fatigue, I have just never found the side effects worth it.

I have always been very aware of the likelihood of me needing to be on some sort of medication at some point in my life, so I didn’t want to start taking things earlier than necessary. Part of this is because I know that medication can stop working if you take it for long periods of time, so I have always wanted to be sure I definitely need to take something before I need to take it.

So the need for the eye drops have been explained to me, very well. And I will of course be using them, to protect my eye sight. But I kind of feel a little weird about it.

I feel like I have reached a milestone in my life, a weird milestone, but a milestone nonetheless. Given my disability getting this far in life without needing medication is something. I don’t want to say impressive because I know that taking medication is not a bad thing. But it’s starting now, for me, I guess.

It’ll be fine, I know. And I will get used to it, like everything else. But my first toe in the pond of regular medication, had to be something I needed help to do, didn’t it? I can’t do eye drops on myself. And that makes me just a little bit sad.

I just want to be able to do things for myself, but the list of things I can’t do for myself continues to grow. I know it’s not bad to need help, but it’s just hard.

As I said I know I’m overthinking this but I honestly can’t help it with this one.

My carer

On By Katy DalyIn Writing PromptsLeave a comment

Who do you spend the most time with?

To be honest I wanted to say my fur babies, and be more positive with answering this question, but then I thought about it.

I thought about the fact that I can’t really be left alone for long. That when I am more than not something happens that I need someone’s help for. And how that means that I often spend a lot of time with the person who carers for me more than anything.

Often I relish the small amount of time I am able to spend on my own, with my own thoughts. As it doesn’t happen often, where I feel completely comfortable, I truly enjoy it.

Sometimes I just really wish that I didn’t need to be with someone all the time. That I could manage the little things in life myself.

Both sides now

On By Katy DalyIn BlogLeave a comment
Image Description: This picture shows a silver car parked by a green hedge blocking the pavement completely.
The second picture shows a blue car parked by a green hedge, blocking the pavement completely.

These pictures were taken earlier this week in my local area.

They show something I have experienced regularly throughout my life. Cars blocking payments and forcing me in to the middle of the road.

Now of course pavements exist because roads are not safe to be walked in. Even less so when you are forced to stay in the road due to inaccessible pavements. Here the payments were made more inaccessible on both sides and so I had to stay in the road.

Without drop curbs streets can become inaccessible very quickly to me, pavements do not simply become inaccessible to me when they are blocked my vehicles, they become more inaccessible. Life becomes more inaccessible to me, it becomes that little bit harder.

And when I raised this issue in my area, I was told I was being selfish. I still do not understand why it is selfish for someone to want the same rights and access to the world as everyone else. How is it selfish to want the same?

I was also told that the person who cares for me should be helping me deal with my issues and I should not be doing it myself. I did not think that I needed saying but as it apparently does, you cannot suggest that a disabled person needs help simply because you don’t like what they are doing. I’m allowed to exist and do things others do not agree with even as a disabled person. To suggest otherwise is insulting.

Just don’t park on pavements.

A fun day out.

On By Katy DalyIn Blog, My Disability Truth1 Comment

So I’ve recently attended a friend’s birthday meet up. I get invited yearly, but usually can’t go, this year I’m was very happy to be free. And I have to say what a relief it was that they are also a wheelchair user.

I know it’s a horrible stereotype that disabled people should only have disabled friends. But it just makes things so much easier. I know that when we do things together it’s going to be accessible.

I wasn’t worried in the slightest about how accessible the day would be. I even went happily to somewhere I had never been before, something I wouldn’t normally do. If I was going somewhere completely new I would do a trial run of the area to figure out both how to get there and how accessible it is. But I didn’t need to do that here, and that was such a relief.

They even agreed to meet a few of us on the way to the place somewhere that we knew, including myself, to go to the place together. How nice was that?!

I spent a day not feeling disabled, not worrying about needing help. I was still slightly insecure over my incontinence issues, but as I got more comfortable in the day it was easier to deal with. But overall it was such a fun day, I was so comfortable and just got to be me. This doesn’t happen often.

This is why it’s easier to be around other disabled people, around other people that understand what it’s like to be you. It’s so nice.

Other people need to learn to be more inclusive and society needs to be more accessible in order to change this in anyway. Having fun shouldn’t be stressful, and for once it wasn’t.

Nothing really.

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

What jobs have you had?

That’s not strictly true, as I did have a few jobs in university, in situations where they are specifically looking at employing students of the university. There are only things that lasted a day though. I did earn my first and to this day only paycheck which was nice.

But I’ve never really had a job despite trying. Many jobs are inaccessible to me, and people don’t really expect me to work. I tried for awhile to fight against this determine that I would fine something to do. But when your options are already limited, and people are just turning you away because you have no experience as no one will let you try. There’s only so many times you can be told no before you end up listening.

Just remembered that not everybody who doesn’t work doesn’t work because they’ve chosen not to. Whether a person is disabled or not they might want to work they may have tried to work but it is not always that simple.

I can’t just walk into a shop and get a 9-5 to pay the bills. I’ve actually dreamed through having a job like this. A job where I am able to earn my own money and have a role in society is all I really want. But I don’t think it’s in the cars and that makes me sad. 

Waiting.

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I’m currently waiting for the person I live with to get home. There is a chance they may not get home before my carers and I’m worried.

I’m torn, because I feel bad at them for ruining late at they know how important it is for them to be home for this time. But also I feel like because they care for me I’m not allowed to be mad when they do this.

What is it they say, don’t bite the hand that feeds you?

Well I never wanted to be fed, but I don’t want to starve.

I’m going to lie.

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I’m not going to say that it bothers me when you do things I can’t do, but it does bother me.

Something are just accessible to me. even when they’re supposed to have accessible options, they just don’t, that is just a part of my life. And when that comes up like it did today, of course I’m going to say that it’s okay with me if you still do whatever it is. It really isn’t. But I’m not gonna be the reason that you don’t experience something. I’m going to minimise as much as I can how much my disability impacts what you are able to do. I’m the disabled one, not you.

But it’s going to upset me that I can’t be part of the experience. I’ve learnt though to keep those feelings quiet, to not make everything about the fact that I can’t be a part of it. I’m not sure it’s ever going to get to the point where it doesn’t bother me though. But I’m sure I’ll get better at hiding it.

The biggest problem here, other than the lack of accessibility, which should always be seen as the primary problem. Is the way I deal with this, emotionally. Logically, I know that something not being accessible to me is not my fault, but emotions make difficult. w

I would be lying if I said that it didn’t cross my mind that if I weren’t disabled, I would be able to have the experience. That I am the problem, not the world around me. And even though I have spent my entire life disabled, I know and understand internalised ableism very well. That me being the problem feels too much like the truth, that every time I fall for it, even just a little bit. And I have to convince my brain it’s wrong.

When I look at this without emotion it is obvious that my brain is wrong. It is obvious that I cannot and should not be blamed for the inaccessibility in the world me. I didn’t choose to be disabled and I didn’t create the world the way that it exists. I just live in it the same as you, the same as anyone else. This guilt, shouldn’t really be mine to take. And yet every time I start by making myself take it, and going backwards from there.

I’m hoping that eventually I will learn not to blame myself so much for things that are not my fault. That I will learn not to blame myself for feelings that I cannot control. That I will be able to validate my own feelings the way I validate others, because I deserve that same treatment and care. But I honestly don’t know that I’ll ever get there.