Tag: Physical Disability

Sometimes I get fixated.

On By Katy DalyIn My Disability TruthLeave a comment

Sometimes I get fixated on damage in my home or dirt I can’t clean or something like that. The only way I’ve found to distract myself from it when something new happens, is to go through the old marks and damage in my head so I feel better about the new thing being less important.

Currently it’s orange juice that I may or may not have spilled on the floor. I can’t actually tell from where I am. I’m reminding myself it’s not as bad as the marks on the wall.

This is the part of disability that you might not even consider. When someone is stuck in one position in the room.

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.

Why do other people get a say in my life?

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My life is a job for other people, and I understand I’m struggling with the reality of that right now.

I’m tired of other people thinking they get to judge how I live. But unfortunately, they do. That’s what happens when you need help. People get a saying in your life places they shouldn’t get. It’s not fair.

I really don’t want to deal with this. part of me attempted just to not answer the phone when it rings next. So that maybe I never have to deal with this.

I really wish people making these decisions, the people judging my life, understood what it felt like to have a random strangers do that to them.

This is making me not want to do anything, to never leave my room. But I still have things to do, because whether they like it or not, I still have a life.

I’m so tired of this. I’m tired of being disabled. Tired of being judged for being disabled. I’m just tired.

I wish I didn’t have to have so much to do with people.

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My carers were off with me this morning. They complained about things I couldn’t change and it’s really gotten to me.

It’s got me spiralling a little bit about the things in my life that I cannot change. I didn’t choose to live in a house with a garden that I can’t look after, and yet I feel like they’re punishing me for it.

I can’t change my situation and I feel guilty for it.

I don’t want to be around so many judging people, and yet I am forced to be because of the help I need. And at the minute it’s really bugging me. 

I thought about it.

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Honestly, I thought about writing this post for today, but I just never got around to it. So I’m admitting straight from the beginning that I’ve backdated this one a little. Sorry.

Honestly today was a great day in many ways and a difficult day in others. Emotions are funny like that.

I dyed my hair, and I really like it. It’s funny how something so simple (in theory) can make you feel so much more like yourself. I say in theory because it’s actually kind of complicated to do when you’re in a wheelchair. But it’s doable, and I love it. It’s well worth it.

But emotionally I struggled a lot today. Part of one of my chairs broke and I ended up texting my OT in the middle of the night about it. Honestly, it made me feel really guilty, as often happens when things break around me. Even if I’m not the one who’s broken them, I have a lot of guilt over the fact I can’t fix them.

I often spiral in the fact I feel like a brake or damage a lot of things. Which is tied to feelings I have of always being in the way, causing problems and making things worse. While logically I know that accidents happen, in practice they just make me feel guilty.

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.

Comfort.

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Sometimes if I’m lucky I’m able to get comfortable, for the record now is not one of those times. That said in the grand scheme of things I’ve been a lot worse. 

But I know that at some point I’m going to have to change the position I’m in, and I can tell that’s going to hurt. I’m really not looking forward to doing it. So much so that I’m debating sleeping in the position I’m currently in, just to avoid moving.

Chronic pain sucks. The lack of control in my life sucks. But mostly right now my legs suck.

Concerts and shows.

On By Katy DalyIn BlogLeave a comment

I’m looking to go to another show. I recognise the privileged position I am in, that I can consider going to shows. That I have the money, time and the physical health and ability to do so. But every single time I do this I’m reminded of how disabled I am.

The extra steps I have to take, to get one of the limited number of wheelchair spaces at at a venue, this venue has four. And not knowing which of these steps this specific venue wants me to take. 

I can’t just buy the ticket on generally sale. I have to first know if the venue is accessible, and then if I need to buy another ticket or if the person who’s support I need at concerts is able to get a companion ticket. I then need to know whether the ticket needs to be bought from the venue website or from the standard ticket sale site.

I don’t want less steps, I want the same amount of steps. This is accessibility.

Now there are many reasons that concerts are inaccessibility to me. So once I’ve bought a ticket, doesn’t mean I’ll have a great time when I go. It feels like my disability is every, like it touches everything, and it does. Even even concerts. Even music.

My freedom is yet again tainted by my disability. More, by the inaccessibility of the world around me.

But I keep trying, I’m going to do my best to keep trying, to go to the show. To be an active part of the world around me. And not just feel stuck and forced to live in it. Concerts and shows help me with this, if they go well. If the experience goes well that is, if it goes badly the opposite happens. But I can but try.

Hospitals.

On By Katy DalyIn BlogLeave a comment

It may surprise you to learn, or it may not depending on your life experiences, that hospitals can be very inaccessible places to be.

I am fortunate enough to not have to spend too much time in hospitals, but I do have one fairly regular appointment. Today I’m at that appointment, though at a different hospital. And I have to be honest, that the same appointment being at a different hospital has really thrown me.

It feels as if the routine of my regular appointment has been disturbed. The people assisting me, don’t know me, and to be honest with you it makes the experience more difficult.

I’m not talking about the medical side of it all. I’m talking about the other bits required because of my disability. The parts of my life that follow me around and always seem to get in the way.

The biggest part is hoisting. Something staff generally don’t seem to be used to. My regular hospital got used to it because of me.

Getting me on the bed is such an experience, that it is almost worse than the procedure sometimes. These are complete strangers I’m trusting to take me out of my chair, in an unfamiliar environment, and I have no choice in it.

I should be used to the fear, and the anxiety. Getting out of my chair. The uncomfortable nature of it all. But I’m not sure I ever will be.

Being disabled isn’t accommodated well in hospitals. They expect you to be ill, but not to have ongoing problems they can’t solve. Disability seems a step to far for them.

All of this and its not even the procedure itself I’m worried about. In fact that’s probably the easiest part.