Tag: Emotions

I couldn’t get in my chair today.

On By Katy DalyIn My Disability TruthLeave a comment

That’s sort of a lie. I was in it for maybe an hour? It just hurt to much.

There’s something not right with the cushion on the chair and it leaves the bar digging into my legs in a way that gives me pins and needles.

The immediate problem is fixable by getting out of my chair and moving the cushion forward. But there needs to be a bigger problem before I call and ask for help to fix the wider issue of the cushion moving. At least that’s what I tell myself, maybe I’m wrong and making myself suffer. I don’t know. Thanks anxiety. I just don’t feel like this is a big enlightened problem yet to get help with.

Today I just got out of my chair again, into my other chair, which to be honest has its own problems but at least doesn’t cause me as much pain.

I’m honestly tired of needing these mobility aids. Of the guilt I feel when they brake and needing help to fix them. But this is me for the rest of my life and I know that I have to accept that, it’s just hard.

I wish I didn’t need all this. I wish I could solve my own problems. To be honest I really wish I didn’t as much help as I do. Needing help consistently takes its toll. And I can’t just not have help for a while. I can’t have a brake from needling someone, from being disabled.

The best I can do isn’t always what you ask of me.

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I’m getting my hair done over the coming days, and I’m worried.

I’m worried because I can’t follow the guidance exactly how I would like to. But I’ve tried my best. I can only wash my hair on certain days in the week and in the evening, due to my carers. But this isn’t something that someone would know about me without me saying. And don’t know how I’m supposed to bring that up to people who don’t me.

When you need help to do things, doing things when you want isn’t always an option. But I do my best.

I have to deal with the anxiety of this alongside the anxiety of having someone new cut my hair. This is the first time I will be paying for someone to come to my home to do it. As the family members that usually do it are unable to do it right now, or ignoring me.

I don’t want to risk going to a standard hairdresser as I’ve done this before and it’s been difficult due to accessibility.

Once I rang a hairdresser to ask if they were accessible, and they assured me that they were. However, when I got there, there was a step outside the building.  I questioned this and their answer was that once so was inside the place was accessible. I pointed out that I couldn’t get inside due to the step. Their solution was to give me a free coupon for that Salon, the one I couldn’t get in.

So I don’t want to risk that again. This is why I’m using a mobile hairdresser. But it doesn’t come without concern for me, nothing seems to come without concern.

I have told them I am in a wheelchair, but I worry that they will just forget that. That they will say they can’t do it because I’m in a chair, or for some other reason I haven’t thought of. 

Logically I’m sure it’ll be fine, but I’m still worried.

Anxiety sucks.

And I just wish that I was able to go into a regular hairdresser and get it done somewhere where I wouldn’t be a problem. 

It’s difficult when dealing with a world that’s so inaccessible to you, to not blame yourself for the reason things are so difficult. Logically I know this is not my fault, but emotionally which is the side that always seems to win, its so much more difficult to deal with.

But getting my hair done seems worth it. After it’s done I just feel like I can breathe, if that even makes sense.

All this said, wish me luck for tomorrow. I honestly feel like I need it.

If I tell you I’m not bothered by you doing something without me, I’m probably lying.

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This time I definitely am. But telling the truth about this just seems selfish so I won’t.

It hurts honestly, when those close to me do things without considering me, even when I say it’s okay. I feel like I’m being left out, and sometimes that just really gets to me.

I know that living my life as a disabled person there is always going to be things I can’t do, there is always going to be things that aren’t accessible to me. If there wasn’t I wouldn’t be disabled. And part of me really wants to tell people that if I can’t do something they shouldn’t be doing it. But I understand how completely selfish that is so of course I wouldn’t do it. Of course I wouldn’t say I don’t want you to do that because I can’t. Why would I do that? But the truth is I really don’t want you to do some things because I can’t do it.

It makes me angry and upset, and quiet. I’m not really sure what more to say about this situation. I’m sorry that I’ve not said more. But I think I’m still angry, whether at myself or them I’m honestly not sure. I want to say I’ll write more later, but if you’ve read this blog for a while you know I would probably forget.

I’m also not having a shower tonight, and if I’m honest the definite reason behind that is because I do not want to get more in there way. I do not want to take time away from them having fun by showing, because that honestly just doesn’t seem fair to me.

Can you just.

On By Katy DalyIn My Disability TruthLeave a comment

You know all those little things that pop into your head to check when you’re trying to sleep in the middle of the night?

Well I can’t check them.

I can’t check where that charger I don’t really need is, or if the front door is locked. Or if one of the babies are doing something they shouldn’t be in the night.

But despite not being able to act on them, I definitely still get the thoughts. I still want to check the heating is turned off or if the front door is locked.

And again, I can’t check them.

When it’s at it’s worse every thought feels like nothing more than a reminder of the things I cannot do.

I just wished the thoughts matched my body. That my brain and the rest of me were on the same page, just once. It would really do me a favour if I no longer had the things that my brain stated to me at the moment which I’m not able to do them.

Concert drama.

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I know I’m lucky to have problems with going to concerts as a disabled person. As that means I’m in the position to both financially and physically to be able to try and figure out how to get myself to a concert. But in the accessible world that we live in this doesn’t make it easy.

One of the caveats of going to a concert if you are disabled person is too alert the venue that you will be going to that you are disabled. But this is not a straightforward as it seems.

There is often unlimited number of spaces for those in wheelchairs or with other disabilities. Sometimes, depending on the venue, this can actually make sense. But more often than not numbers are limited to make things easier for a venue. To ensure that they take a box in the best way for them, rather for concertgoers.

What really bothers me personally is the fact that venues will not allow myself to go in the general admission area when it is accessible to me. They simply say no. I am a health and safety risk.

They don’t actually care about my health and safety or anyone else’s health and safety. They simply do not want to get into trouble if someone were to hurt themselves on my wheelchair. Honestly, that feels like a them problem. But they insist on it making it a me problem.

This is even harder when I don’t feel disabled despite how disabled I may look. I don’t want to go in the special area. I’d rather be in the general admission area and not be able to see then be in the special area with a perfect view. I want the proper concert experience and I think that I deserve that. I don’t think it’s too much to ask for. Don’t even get me started on the special treatment that some disabled concert viewers believe they deserve. I’m not talking about the separate area. I understand why some people might need that. That’s why I think it should be an option, not a necessity. But someone interrupted perfect view, as if that is realistic of a concert. I’m not just really annoys me.

The process of getting accessibility arrangements for a concert can feel like you’re asking of venues permission to attend. Something that disabled would have to do.

For this reason and for the idIocracy of the system, I tried to stay out of the finer details of organising my access to concerts. I really hate it. I know that I’m going to get too angry at the whole thing and not be able to deal with it properly and sensibly.

Concerts are a polarised experience for me. They even make me feel completely included and part of society in a way I don’t feel anywhere else. or extremely disabled, very in the way as I don’t belong there at all. There seems to be no middle ground. And yet I keep going because I want the good experiences. I deserve the good experiences, I think.

As I write this post there is a chance I may not be able to go to an upcoming concert that I already have tickets and VIP meet and greet for. This is due to aforementioned bizarre system of accessibility. I’m honestly trying not to think about it because I really want to go to this concert. And I’ll be heartbroken if I can’t.

Anyone reading this that may think disabled people get things for free because of schemes like companion tickets. If you’d rather deal with the things I have to deal with in order to get the free tickets you’d be welcome. I would swap in heartbeat. I would trade all cheaper tickets I’ve ever ever got just to attend concerts as a normal person. I just want to sing and dance.

Red White and Royal Blue. ❤️🤍💙

On By Katy DalyIn Writing Prompts2 Comments

What book could you read over and over again?

Honestly this is one of the loveliest books I’ve ever read.

But as sometimes happens the film adaptation is nowhere near as good. They just miss a whole load of relevant parts of the story out. It made me so sad.

I have to admit I’m not a big reader of traditional books. But I read this book in two days, that’s very fast for me. I just couldn’t put it down.

I wish I could forget the book and read it again from the beginning without knowing where it would go. I wish I could experience all the emotions all over again. All the feelings, all the pain and love.

Physical feelings.

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For having a body that doesn’t work I feel a lot physically. My emotions seems linked to physical symptoms in a way that can honestly be very overwhelming sometimes.

It’s hard to live in a world where you feel so much, I guess.

And these feelings can and do cause a lot guilt. As I know ultimately I am making situations about me that are not ultimately about me.

And for that I’m sorry.

The way we experience emotions

On By Katy DalyIn Blog, My Disability Truth, Writing Prompts1 Comment

Which aspects do you think makes a person unique?

I think the most unique thing about humans is the way we experience emotions.

The fact that different things make us all angry, sad, scared, loved. While you may understand someone’s emotions it can be difficult to understand what triggers them, and impossible to understand how they feel them. And I honestly find that extremely fascinating.

I firmly believe that nobody’s experience is exactly the same where emotions are concerned. But if you can try to understand someone’s emotions in a situation you may be able to understand more about them and who they are as a person.

I feel like emotions, the emotions of others, are a big part of how I understand the world around me. I think this comes down to my disability, and the fact that I cannot understand the world completely physically. No matter how I hard I try, physically there will always be  things that I miss due to my disability.  But emotionally I am able to have a more complete understanding of the world around me. Man made ablesim doesn’t exist in the emotional world.

But just because I understand the world around me better through emotions, doesn’t mean that my emotions are easier to deal with.

At the minute I am dealing with anxiety over doing something that I know is important but scares me because it involves a phone call. I hate phone calls. No matter how important I know they aren’t I don’t want to make them. Annoyingly sometimes I get the confidence to make the necessary phone calls, but of course this never lines up to when I’m actually able to do that. And when I am able to do it, my anxiety acts up again.

What I can be sure of is my emotions don’t like me. But maybe that’s part of what makes me a unique person.

People.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

I can’t avoid them forever and I know that, when I’m with them I don’t even want to.

But when I’m on my own, thinking about meeting with people, leaving the house just seems like to much. It’s always worth it in the end, and locally I know that, but it doesn’t make it easy.

I don’t know if this anxiety comes from growing up disabled, or if it would just be a part of me anyway. It’s impossible to know having grown up disabled, which parts of me or my experiences would be different if I wasn’t disabled. But I suspect or maybe some part of me hopes, that it would be.

Growing up in the world, that is an accessible to you, can often feel like you’re growing up in the world that was made specifically to be inaccessible to you. Your existence in that world is nothing more than an annoyance to those around you. That’s a hard thing to deal with every day of your life for the rest of your life. It’s one of those feelings, that’s always there, even though it’s usually in the background and I can ignore it. but I do have a feeling that the residual existence of this feeling is what causes the anxiety that I’m left dealing with at the moment.

Either way I’m stuck what I have now. And let’s just say that’s a dislike of being around people, and sometimes even leaving the house.

I really wish I didn’t feel that way, that I could just go out without feeling like I didn’t want to. That I could want to go out.

But either way I will, and I know, I will have a good time when I do it. It’s just the feeling leading up to it, the anxiety, the fear of being judged, that I have to learn to deal with.

Sorry people. I’m trying.