Tag: Cerebral Palsy

I can’t get changed.

On By Katy DalyIn My Disability TruthLeave a comment

So I got very wet from the rain walking the dogs this morning, and as I am unable to change I’ve spent the day very damp. Now that I’m on my way home, I’m starting to dry off a little.

In case this wasn’t clear, once I’m dressed in the morning I generally cannot get changed until the evening. There have been occasions where I have been able to get changed throughout the day, but as I have gotten older and changing has become more difficult these instances have become few and far between.

This is somewhat of a personal choice I suppose. I could have another call in the middle of the day, but this would limit what I would be able to do with my day, and I don’t want to do that. Either way I wouldn’t just be able to call carers back when I needed it, so hanging around for them in the day just doesn’t make sense to me.

So my freedom comes at the price of my comfort, and on most days like today, once I’m wet I stay wet. But hey, at least it isn’t pee. That my friends is what we call an incontinence joke.

But now I’m cold, like to the bone cold if you know that feeling. I’m very glad my day is nearly over.

All this is to say, as I loose the energy needed to write this post. If you see someone with spilt food on there clothes, which yes I also did today. Or wet clothes. Or just something that can’t easily be fixed within five seconds, just stay quiet about it. They may be aware and may not be able to fix the problem themselves. You hilighting it only brings more shame. Additionally wait another 10 if its raining a lot when its time to walk the dogs.

A work complication

On By Katy DalyIn Blog, My Disability Truth2 Comments

I have been looking at getting some work, mainly because in all honesty I just want something to do with my time and a little extra income would be nice. But I do not have the ability, the energy, or the opportunity to work a full time job.

So I have to be sure that any work I find must not cost me the benefits I receive, as I need them to ensure all bills are paid. But they don’t make that easy.

Working within the benefits system is just so complicated, that yet again I feel like it isn’t worth what it will cost me, for what I’ll get out. It’s just too much.

It doesn’t make sense really, a system that claims it wants to get people into work, to be so difficult to navigate.

I wish I could just go and work in a shop, that that would be something I would be able to do. That I could just have something to do that would bring me enough income to be self-sufficient. But my disability, society, has to make things so much more complicated for me

I honestly don’t know why I keep trying, and yet I do.

But people who do not know better call me lazy, say I have not tried, when all I have done is try. I’m tired of trying.

I’m tired of not being able to work.

I’m tired of the system being so complicated.

I’m tired of it all being down to me to try, when it is clear others want me to fail, so I will.

I’m just tired.

I wanted to go out today.

On By Katy DalyIn My Disability TruthLeave a comment

At least I think I did.

But my chair and my legs had different ideas. My body just doesn’t want to do today and I’m struggling with whether that means I did or do or not.

I don’t know anymore.

I think because I’m so used to my body just being against me. That I forget how against me it is daily. Until I have the days where it’s just that extra bit against me. It makes me so sad, and I know it shouldn’t.

I should be used to this crap without letting it get to me.

I’m just tired of it. Sad I miss out because of it. I guess today I just don’t want to be disabled.

I didn’t think you’d want to go

On By Katy DalyIn Blog, My Disability TruthLeave a comment

So the person I live with got invited to a party by a neighbour. I was also invited, apparently, but they told them I wouldn’t want to go. And I guess, it got me thinking.

I don’t know if I would actually want to go. I don’t know if that’s a fair question to be asked of me, when it feels like I definitely don’t get to make that decision.

Where the party would be I wouldn’t easily be able to get to. So I shouldn’t want to go anyway. I can’t actually work out if I want to go or I want to want to go. Decisions aren’t fair when they’re already made for you.

I’m angry that this one was made for me, but it was already made for me, before it was made. So I shouldn’t be angry, and yet.

When do I get to make a fair decision that isn’t controlled by the world around me or by my brain?

I’ll be in my room if you need me.

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.

When you’re not the one fixing the problem you don’t get to decide how the problem is fixed.

On By Katy DalyIn My Disability TruthLeave a comment

So my little girl was at the vet today. That went about as well as can be expected.

But the person I live with left the medication she was given in the car of the person who took them to and from the vet. As I’m in bed I can’t go and collect it, and they do not want to do so until the morning.

This massively frustrates me as I want to check the medication now, but as I know it doesn’t logically matter I haven’t said anything to them. I know they would go if I asked them to, but I don’t want to be the one to do that. It doesn’t seem fair to make them do something that isn’t that important just because I can’t do it myself.

But if it were up to me I would go and get the medication now. And I think what’s really bothering me is less the problem but more that I cannot fix it the way that I want to.

I can’t help thinking that if I wasn’t disabled I would be able to solve the problem myself. Even more I would have been able to take her to the vet myself, and I wouldn’t have lost the medication so there wouldn’t be a problem to solve. I think this is tired to how useful I feel as a parent to my pets, if I wasn’t disabled I could just be more use to them, show them my love better.

I know logically this isn’t true. And that this isn’t a really big problem, but it’s the little problems that seem to upset me the most.

I just have to keep reminding myself that tomorrow it won’t be a problem anymore.

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. 

Functioning on little sleep

On By Katy DalyIn My Disability TruthLeave a comment

So this is another backdated post.

Today was very busy with almost no energy. I slept 2 hours not consecutively, then had to get up and go out. I didn’t really stop until I got home about an hour before the carers. I then fell almost straight to sleep and woke up the next morning. Not including briefly being woken up for care which I honestly don’t remember. 

I barely had the energy to function and do what needed to be done, let alone write, hence the backdated post.

I guess my need for sleep finally caught up with me. This happens occasionally. I just wish it actually made me feel like I’d slept.