Tag: Feeling

I don’t want to be disabled.

On By Katy DalyIn My Disability TruthLeave a comment

Someone made a comment on how benefits are spent, because they have a job and the person they were talking to does not. You know the classic, you dont work, I do, and thats what you’re spending my money on. I am one of the reasons this person isn’t working, so I feel guilty.

They then said they would like my life, to not have to work, and to sit doing nothing all day. I made the point that they would then have to take my disability from me. And I would rather have their job than my disability, so I could do what I want with my own house.

I’m sure you know by now you might have figured that this person is someone close to me, someone who should have known better. And yet they still think disabled people are playing the system.

I don’t know how many times I need to say it to have someone believe me. But I really want to work, and I don’t want to need to rely on benefits. To suggest otherwise is a harmful assumption, and is just unfair. To judge people on benefits for how they spend their money is cruel, to say the least.

If you want to have the benefits, and the perks, you also have to take the bad stuff, the reality.

You have to take the fact that you will never be able to help people as much as they help you. You will always need them more than they need you. Your control is conditional. Being viewed as an adult is conditional. You’re only a person when they want you to be.

Being disabled or being unable to work, is not a ride to an easy life. In fact the reality is the opposite. And I hope when you have to deal with this yourself, because disability is a when not an if, that no one makes you feel the way I was made to feel.

Please excuse this one, its a little more rant like than thought out. I don’t really have the energy for thought out today.

Why is it better that I watch TV alone?

On By Katy DalyIn Blog1 Comment

So I’ve scheduled this post to be added to the blog at a time, I’m hopefully asleep. you’ll understand why if you read my previous post.

But as I write this post, I’m watching a tv show, due to the whole not sleeping thing. In fact that’s probably part of why I’m still awake, but that’s not something we’re going to touch right now.

As I watch this program, I’ve stopped, started, muted and googled things many times. And this is how I generally watch tv when alone. It’s obviously not appropriate to do this when watching tv with others. When I’m doing that I’m just usually on my phone.

I think it’s a control thing. I think it’s wanting to know the future but not experiencing the emotions that come with that. And I obviously have the most control over TV when I watch it alone.

It’s a silly thing to want control over. But when you feel as if you don’t have a lot of control in your life, you’ll take any control you can get, and that includes TV. Controlling the rest of the world, the rest of my life, feels inaccessible to me. Controlling watch I watch on TV and how exactly I watch it, is not.

Sometimes getting a little bit of control back can help. And I think as long as it doesn’t hurt anyone, including yourself controlling the little things can’t be bad.

But all of this really means that it’s just better that I watch TV alone. So I can do it at the speed that I want to do it.

Why do I keep all the lights off?

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Most of the time I keep the lights off in my house. If I don’t all I see is the damage I’ve done to the walls in my chair.

A combination of a house not built for a wheelchair user, and frankly shoddy council work. You can literally wipe the paint off, believe me I have. And because I can’t work a full time job, due to a combination of my disability and the ablesim and inaccessibility of society, I’m unable to do anything about it.

Maybe if I could work, if I could earn money. If I could have more than just enough to live on, things would be different.

But they’re not different.

So I skip the perfect homes, admire the damage and try to feel less alone.

I sometimes wish the things I couldn’t do didn’t bother me, and wonder if I would live a happier or a calmer life if that were true. But they do bother me. The walls in my own home can be difficult for me to look at. The homes that are more than just houses, make it harder. So I don’t look.

In my own house, the lights stay off as much as possible. And I cover what I can, though it’s not all I wish I could, of the walls. And I try to get on with my day and pretend it doesn’t bother me, and hope that one day that’s the truth. Or, you know, I become a millionaire.

When someone else is in hospital.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

I begun writing this post with the knowledge that someone close to me will be going to the hospital soon, and while it is unlikely to be serious, I’m going to refrain from posting this until I know that to be sure. And yes I am doing this to save myself from more guilt than I already feel in this situation.

I am torn as I write this post, by that little voice in my head telling me not to make this about me. That I already make to many things in life about me. But I still have emotions that I want to express when it is safe to do so, and this is my blog, my safe space to do that. So despite the conflicting feelings about writing this post I am going to do my best to continue.

All that said know by the time this is posted, the situation they are facing will be clear. They will no longer be in hospital, and this is all I will be saying on their health as it is not my place to discuss someone else’s health.

What I really want to focus on is what it’s like as a disabled person to have someone you care about going into hospital.

In truth, this depends largely on why they are going into hospital and particularly how serious the problem is. I’m sure this is the case for everyone. But where I believe this whole situation is different for me as a disabled person, is asking the question, will I cause more problems being involved.

Sometimes largely due to the inaccessibility of the world around me, choosing to involved in a situation is something I must consider carefully. And his applies to hospital visits.

I could end up causing more of a problem than being helping by going to the hospital. I could end up taking the attention from them if they do not appear to be in need of help on face value. This is due to people assuming I am always the person in a situation that needs help. I can never be the person there to provide help.

If I have to go to an inaccessible or even just unfamiliar location like a different hospital. It can quickly feel like I become an obstacle to them receiving care, as my accessibility is something else that needs to be considered as well as providing the correct care.

If a problem occurs in the middle of the night, I cannot simply get up and go to the hospital. This is because I need carers to physically get me out of bed, and for public transport or accessible taxis to be available in order for me to get to the hospital. This means I am unable to be anyone’s emergency contact. While I know that this makes perfect sense because I am unable to be the help. I want to be in the situation. I’m unable to be there for the people I care about when they need me.

Sometimes it is better for the person I care about for me to simply stay away.

When my mum was in hospital the reason she died in hospital and not at home was so that I could be there. If she went home I couldn’t be due to the layout of her house. This is something I am as grateful as it’s possible to be in this situation for. As I got to be there for my mum. I got to do my best to care for her when she needed me. But it is probably always something I am going to have mixed feelings about. I will always wonder if she could have had a better death at home.

I do not want to be the centre of attention, I do not want to take any attention. But I feel lil my disability forces me to be in almost all situations. And I have to deal with the guilt that comes a long with this. Usually silently, so I don’t unnecessarily take more of the attention from the person who is unwell.

I just want to help. And hospital are usually situations where I am no help at all. So I just try my hardest to be there when asked and not to be in the way. To cause the lease problems and not drown in my helplessness caused by the lack of help I can provide.

The reality of being disabled all your life. My health having been the way it is for my whole life, the novelty has warm off with certain parts of my reality. This can leave me feel in like other people’s health problems are taken more seriously than mine. Other people get the novelty, that they deserve, but I don’t qualify any more.

Me being in hospital for certain issues in my life is just the norm now. I think there are some ways that this makes dealing with the problem for me easier. As I don’t have to worry about how everyone else is going to react. But I am also left with the emotional baggage of not having that support.

Tied to this is also the fact that my disability and health problems feel like such a big part of my identity, whether I want it to or not. This means that sometimes in the pat it has felt like people are stealing my identity by being ill. And yes I know how crazy and self dented that sounds.

While I don’t feel this as strongly any more, as I find my identity outside of my disability and the problems I cause. It sort of feels like the feelings are always going to be there.

Ultimately I know if I am not the one in hospital it is not about me. And my emotions should and will take be a second to whoever is in need in that moment. But being in the way, my helplessness in the situation, and feeling a loss of identity. Will likely always be something I find myself dealing with whenever someone I care about is ill.,

Disconnection.

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

You’re writing your autobiography. What’s your opening sentence?

A story that doesn’t quite fit together.

As a sentence on its own own, this makes no sense. Which I suppose could be said to defeat this purpose of this writing prompt. But to me, this just seems perfect.

It seems like the perfect way to describe a life that has felt like it never ended up with anything. My mind always seems and a different page page to my body, and I really don’t know where my heart is half to time. But it seems to be the prevailing theme of my life, that these areas, nor any areas will ever line up.

Did you ever play that game where you would draw the top half of something, a person maybe, or write the first sentence of a story. Then you would fold over the page and hand it to the next person to draw or write the next part. And so on until you had a completed, drawing or a completed story. Then you would read the story out loud, or look at the drawing, and laugh.

You would always laugh at them nonsense that would be produced. When the person before I had no idea what had been written drawn. When the next step seemed to be off kilter with the previous.

My entire life, kind of feels like that.

I can’t say I have a bad life. There are some really great parts. But I always get a sense that I’m living a life that was never supposed to be mine.

I don’t mean that in the sense that I believe someone else should have had to deal with my difficulties. I’m frequently glad that while those around me have their own struggles, they aren’t the ones I have.

I mean it in the sense that it feels like I mind or a soul like mine wasn’t built for the life I have no choice but to lead.

Does that make sense?

Does it sound selfish? Is it selfish? I honestly don’t know.

But that’s where I got the opening sentence for my autobiography from. Or more accurately, I suppose the opening idea.

Interestingly, even my sexuality found itself fitting into this area. Despite that being a lot more difficult to figure out in many ways. And yet it sometimes feels like the only part of my life that makes any kind of sense, and as in any way within my control. But I have to be very careful with exploring that as I can easily get sidetracked.

While I know that my life will never slot into the life I feel I should have had. I can only hope that one day it at least slots together, and begins to feel like one life. That I begin to feel like one person, rather than several parts of a person that will never quite meet.

It always feels like that’s why 

On By Katy DalyIn My Disability TruthLeave a comment

So I just found out that certain members of my family are going on a hig trip abroad. Neither I nor my loose family were invited this trip.

I feel like I’m the reason none of the family got invited to this. I know that’s a jump logically. But I feel like if I wasn’t disabled maybe they would have been invited.

Sometimes my disability feels like it causes the problem even when I can’t be sure that it does.

Drabble

On By Katy DalyIn My Disability TruthLeave a comment

Sometimes there’s a lot to say, but you don’t know how to say it.

Sometimes there’s nothing going on and it feels like everything.

I feel like I’m stuck and I don’t know if it’s worse when no one wants me to achieve or when everyone wants you to.

What I want from life doesn’t seem to matter. What I want seems impossible.

This seems judgmental.

On By Katy DalyIn Disability Pride ♿️, Writing Prompts2 Comments

What do you complain about the most?

This question sounds like complaining is a bad thing, but I don’t agree. There’s nothing wrong with complaining, I think it’s good for the soul.

Complain about the weather.

Complain about the work you have to do.

Complain about music.

Complain about your pain.

As long as it doesn’t hurt anyone, you’re allowed to complain about things that need complaining about.

It can make you feel good.

It can release negative emotions.

I complain about being disabled fairly often. That seems to upset the people who for dome reason always want me to be happy.

Why do you always have to be happy?

You’re allowed to have a bad day, when you’re not disabled. But when you’re disabled, people often say you need to be more positive. Like everything they’re good days and bad days and that’s okay, that’s how you cope. Ignoring the bad days will just make them worse in the long run, when you can’t ignore them any more.

Letting the anger out with the little things, can make the big things easier to cope with.

Feel the bad things, just don’t hurt anyone.

Snow Day

On By Katy DalyIn BlogLeave a comment

I’m someone that likes to spend a lot of time in my house, but it’s different when you don’t have a choice in that.

If you ever look at that too closely at my situation, you might come to the conclusion that that is because the world outside is difficult for me. There is a lot of inaccessibility that I face on a daily basis. Far more than I will ever have the time or energy to process let alone write about.

There is just some stuff you just have to ignore to get on with your life. But it’s impossible to ignore everything, and I don’t think I should have to just make everybody else feel better. This is why I started to write about and share my experiences.

Today is one of those days, where I can’t ignore my experiences of inaccessibility. The inaccessibility I’m facing today, and my lack of choice in this, is obvious today. As the picture below shows, today is a snow day.

Image Caption: The ramp outside my home covered in a thin layer of snow.

While I have cropped this photo to protect my safety and not give too much away about where I live. The original photo also showed how my garden and the pavement and road outside my home were also covered in this amount of snow.

This may not seem like a lot of snow, and I completely understand that depending on where you are in the world it actually isn’t. But when you use a wheelchair it doesn’t take a lot of snow to make going outside incredibly dangerous. So I’m going to be stuck in the house.

Now I had no plans to go outside today, I’m actually waiting for something to be delivered. The only thing I really had to do was walk the dogs, but they’ll be fine for one day.

But now I can’t leave the house, and this isn’t just a choice, things feel a lot different.

Choice matters. And just because someone is doing something that you wish you could do, like staying at home, doesn’t mean they’re doing it by choice.

Today the world is inaccessible to me because of the weather. And that means there’s nothing I can do about it, but wait for it to pass. Maybe tomorrow will be different, but we’ll just have to see.

I hope you get to enjoy the weather wherever you are, and have the best day you can, whatever that looks like for you.