Tag: Control

Control.

On By Katy DalyIn My Disability Truth1 Comment

I know I’ve written about control before, but a lot of my life feels out of control right now, and the little things are really throwing me.

I just really want to be able to make my own decisions in my life but that’s not something you’re able to do when you’re disabled.

All I really want is not to have strangers in my house, and yet they are, whether I like it or not. I don’t have control of what happens in my own home or life. It’s getting harder and I’m trying to be big about it, because it’s Christmas and in all honesty I have to be the bigger person here. But it’s so hard.

I just want my space. I just want control. I just want not to be disabled in my own space.

Please just ask me. That’s all I’m asking.

Honestly at the minute when I write on this blog.

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When do you feel most productive?

I don’t know if that’s sad or not.

But it really does feel like this blog is the only thing I can do for myself right now. That might sound a little buzzard, but I think it’s the fact that I get to fully control what’s on this blog. There’s not many things I get full control of in my life. So I hold on to what I have.

I am aware that I’ve said similar things on this blog before, but at least you know I’m telling the truth.

Choices.

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Or lack there of.

When I need help to do something that I don’t have any control with when and sometimes how it will be done.

I like to walk the dogs first thing in the morning, simply to get it done. But if the person I live with disagrees, like they did this morning, I have to wait for them to want to do it.

I loose the argument of when things get done when I need to help to do them. And today is just one example of many.

Sometimes it really gets to me, the simple fact that often I can’t just do what I want when I want. The fundamental lack of control is something I don’t think you can really understand the impact of unless you experience it.

The inaccessible of the irrational.

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It may be a hodge assumption on my part, but I truly believe we all do irrational things from time to time. Like checking the front door is locked, or in my case the same spot on the floor is clean.

Just because you’re disabled, and doing these irrational things might be more difficult for you, doesn’t mean it takes away the desire to do them. I wish it did.

I sometimes wish I didn’t want to do the difficult things in life and then maybe my life wouldn’t feel so difficult. But in reality it means that I would have to do not want to do almost everything. Even then it doesn’t mean that I wouldn’t experience these feelings again. And I know no one can live a life and not do anything.

I want to check that the same spot I watched my the person I live with clean on the floor is clean, but to do that I need her help. I need her to put the cleaner in reach, and of course she asked why I wanted this. So when I told her the truth she got upset with me, as if I’d accused her of not cleaning it properly. This isn’t what I was doing. It’s just annoying me, and I would feel better if I could check it.

If I wasn’t disabled, or to phrase it from happier me, if my home were more accessible. I would be able to do this without asking for her help, and so I wouldn’t annoy her. But it isn’t so I have annoyed her.

Sometimes I just want to do things for myself, but that is almost never possible when you’re me. That really gets to me sometimes. To be honest it makes me feel like my own existence is inaccessible to me. But this isn’t the first time I’ve experienced this, and I don’t think it will be the last.

This blog is honestly one of the only places I feel truly free, and as in control as possible.

I’m going to try and do the floor now, wish me luck.

After writing this post last night ready to post this morning I discussed it further with the person I lived with and they cleaned the floor for me, meaning that I didn’t need to do it myself. I have some thoughts about that that I wanted to share as well.

So I didn’t have to clean the floor myself, which saved me physically, but I feel like having someone else do something for me again has had an emotional impact on me. I know I could have done it myself if I was given the chance, but sometimes when you visibly struggle doing something, people don’t want to give you the chance, I think that’s what happened here. They meant well, but they didn’t even want to let me try to do it themselves, and I didn’t want to upset them by arguing that I could do it myself. So I just let them do it.

It makes me feel like I’ve failed at another physical goal I have set myself, I feel like I’ve failed at something that’s so simple that I should be able to do myself. I just wanted to try, to have it done my way, and I didn’t get that. I’m trying not to feel to guilty about that honestly, but it can be very hard. To be honest with you, I rarely get the chance to have things done the way that I want to. But that’s just what happens when you need a lot of help from others, you rarely if at all get any control over it.

It sounds ungrateful, I know. But just imagine if you had no say in all the little things around you. If you couldn’t decide exactly how your coffee was made, because when someone does a lot for you, you can’t ask them to remake coffee that is just wrong. That’s to ungrateful.

It’s not being able to do the little things that really get to me. And that’s why I’m trying not to overthink the floor, remind myself it’s done now, and in the grand scheme of things it doesn’t really matter now.

I’m glad I have the help I have, I just want the space and time and access, to do things by myself sometimes.

I don’t want to be disabled.

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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.

Stuck in bed.

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My hoist broke today. A necessary piece of equipment I use to get from my bed to my chair. So I spent the day in bed.

There are different types of hoists which enable people that are unable to transfer themselves, to be lifted safely. My hoist is a ceiling hoist, meaning it runs on tracks attached to the ceiling. This is a lot more compact than a portable hoist, which is similar but on a frame with wheels which needs to be pushed around the space.

For those of you that don’t know I have included a picture of my hoist. The first picture shows how it was broken, the second picture shows my thankfully now fixed hoist.

Image Description: A picture of my hoist on  the ceiling with the track visible. The top of the hoist shows exposed wires, and the cover is dangling above the part of the hoist a person is attached.
Image Description: A picture of the same hoist as in the first picture, above my head, with the cover now reattached.

My hoist was fixed very easily with the cover just being reattached by the engineer. It is something that a non-disabled person would likely have been able to do by themselves. However I often need help to do what others might view as a simple fix. And thought it best to get it fixed professionally to ensure it wasn’t accidentally broken more by someone else trying to fix it.

Now I could have gotten up after the hoist was fixed, but I honestly just didn’t see the point. This is why I like to get up and into my chair early every day, even if I go back to sleep because I find it difficult to find the motivation to get up later in the day. I’m very used to napping in my wheelchair or my other chair, which is also I we’ll chair I guess.

It’s important to remember that if a person hasn’t chosen to stay in bed, they’re not being lazy for staying in bed. The choice in there actions matters.

Another reason I make sure I get up and into my chair every morning is so that I don’t become unable to sit in my chair, and so that I am able to have as much freedom as possible to go out during the day. 

When you rely on technology, on accessibility aids, to live your life, them braking is a loss of freedom. And as things almost always brake at some point, you just have to live your life with the potential loss of freedom. With the reality that the world could become inaccessible to you with no warning.

This can be one of the reasons someone may have to cancel plans with others with little or no warning. Just beware that when plans are cancelled at short notice, the person may not want to cancel on you. If it’s completely out of their control, don’t make them feel guilty for it, I promise you they feel guilty enough.

We can all feel like we have a lack of control in life, and there are many situations that we do actually not have control in life. However most people will have at least small elements of conrol, which room of the house they sit in for example. But when you’re disabled, it can feel like this applies to all situations, and sometimes it actually does.

A little compassion can go a long way, this applies to everyone, not just disabled people. I’m just thankful I can get on with the rest of my plans for the week.

I hate the damage my disability can do.

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My sister just drove my chair into my bed which then hit my wall because my bed is also on wheels. A wall that is very poorly painted as I live in a council house. A wall which is damaged again.

It keeps happening.

The price of living in a wheelchair in a flat not properly designed for someone in a wheelchair is constant damage of the building in various ways. I know this. I’ve been a wheelchair user my whole life. And yet it still frustrates me.

I will get over the damage I know I will, I always do. I know that it’s not really important. But right now I’m angry with myself for being disabled. All I can think is this damage wouldn’t be happening if I wasn’t disabled. The internalised ableism is winning.

But I know in reality that the problem is the inaccessibility of housing for people in wheelchairs like myself. That without a lot of money, housing will always be inaccessible to me and I will always end up damaging it in one way or another.

I just wish it didn’t upset me every time. When I know it’s an inevitability I can do nothing about.

So I make a lot of washing sometimes.

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Incontinence can be a real treat if you know what I mean. And sometimes I can be incredible unlucky and have issue multiple days in a row, which unfortunately creates a lot of washing, for obvious reasons.

Now I’m not the one that does my washing. In theory I could do some of it, with our current set up. But I would not be able to do a full load of washing, this is currently completely impossible for me to do, due to inaccessibility in my house.

However, even if my house is more accessible in this area, it doesn’t mean that I would be able to complete a full load of washing. I don’t have a physical energy and strength required to do so on a regular basis. And unfortunately, I definitely do not have the strength and energy to keep up with the washing that I produce.

What I’m saying, is that regardless of my set up, I would always be relying on someone else to do my washing. Which leads me to the same problem, I have with needing to be reliant on others to do things for me. I’m relying on them doing it the way they’re going to do it. And I can’t really complain about it.

This is a common occurrence for anyone that is regularly relying on others for help. If you get lucky, you are sometimes able to ask people to do things a certain way for you. But the chances of this happening with regular everyday tasks is unlikely and definitely not possible for me. It actually risks me having any help at all. If I argued every time something wasn’t done the way I wanted to.

Sometimes you have to pick your battles. When you need a lot of help you have to pick your battles a lot of the time.

To anyone that doesn’t need a lot help, this might sound horrible and ungrateful. And in all honesty, I understand where you’re coming from with this opinion. But I have to say you’re wrong.

When you need a lot of help the only way you can get any say or control in your life is by specifying questioning how that help is done. Can you imagine if you didn’t get to say anything that goes on in your life? How difficult that would be to deal with emotionally. That’s what people need help a lot of the time, myself included, are stuck dealing with.

It’s a balance of control, and gratefulness. And the gratefulness gets old.

It’s not that I’m not grateful, it’s the being grateful all the time it gets old quickly. h

I hope you understand where I’m coming from and it doesn’t sound too horrible.

Well this is a question.

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What are your two favorite things to wear?

I actually wear the same jumper almost every day, so much so that I have five of them to make sure that I have a clean one. So even if you see me wearing the same outfit just know that it is clean.

Image description: aside on view of myself tilted back in my wheelchair, looking towards the camera. I am wearing a completely black jumper with a large front pocket and black pants. There are two dog leads visible across my body. And a Bella a Caviler King Charles is visible under my feet.

Please excuse the bizarre look on my face in this photo, Imogen, my other dog had just jumped off my knee and surprise me. But this is the best picture I could find my jumper. Most of my pictures are perhaps unsurprisingly of my dogs.

I started off wearing these jumpers two years ago give or take. I bought one while I was out somewhere cold and I really liked it. I found myself favouring wearing it daily and being upset if I couldn’t. It was just so comfortable. To solve this problem I bought multiple of the same jumper.

Honestly not only was wearing this jumper the most comfortable thing I’d found, but I also feel like it took the pressure off me having to decide what to wear daily and how to look a certain way that would be considered presentable.

I honestly hated the question, of what did I want to wear today, almost as much as I hated other people and answering it for me. I want to control but the choice was just too much. So I got rid of the choice maintaining the control. And as such what I suppose could be considered my own uniform was born.

I’m not sure how long I will continue to wear these jumpers for, probably as long as I feel comfortable in them. And I don’t really want to analyse exactly why I’ve made the decision to wear them. it doesn’t hurt anyone to wear these jumpers, and so I don’t think it’s something that needs to be looked at in a lot of detail.