Tag: Carers

Not sure if I answered this one right.

On By Katy DalyIn Disability Pride ♿️, My Disability Truth, Writing Prompts1 Comment

Name your top three pet peeves.

1. People that disguise ableism, sexism, racism etc as an “opinion”.

2. People that are continuously late, with no reasoning behind it, for a job they are paid to do.

3. People that lie, particularly about inconsequential lies, where the truth wouldn’t actually be a problem.

These are all based on real experiences I have with my own careers. I probably have more things that annoy me to be honest. However given the conversation I had today with one of my careers, who let’s just say had some very ableist things to say, I thought these fit well.

Just read you audience a bit more please.

Why did I sleep in my chair the other night?

On By Katy DalyIn My Disability TruthLeave a comment

As a full-time wheelchair user, I’ve become what I call very wheelchair shaped. by this, I mean that unsurprisingly, my most comfortable position is in my wheelchair as this is the position I spent most of my time in. Over 10 years ago, I decided to stop doing physio which likely increased the speed at which I have become wheelchair shaped. But honestly given how much time I would spend in a wheelchair, normally I think this was an inevitability. I think physio would have only put off this happening by maybe a few years if that. And the physio that I had to do would have been aggressive and would’ve had to be consistent to be effective. For those have never done physio it is incredibly painful and honestly simply not something I wanted to waste my time doing. This is informed consent for you. The right to do things that may seem backwards so long as you understand the consequences. And I do and I have. Honestly, I’m happy with the decision I made.

All this to say it’s not a very good idea to sleep in my chair, but I usually have a comfortable night when I do it. so that’s the least I’m good thing I slept well.

But the question is why did I do it?

I try not to sleep in my chair, because I know that, ultimately it’s not good for me to do physically very often. But last night it was something that I had to do. This is because my sister was out at a concert and I can’t deal with the dogs and the carers alone.

My sister was however meant to put me in my chair when she got home. But I told her that she didn’t need to, because I was very dirty due to having warn the same pad for 24 hours.

However in reality the reason I told her that I would sleep in my chair was because she looked annoyed at the idea of having to put me in bed. She didn’t say she wouldn’t do it, and honestly I don’t think she would ever do that because she knows I need the help.

But you know when you just get that vibe off people that they don’t want to do something? It’s really annoying when that something is something you rely on them to do. So I thought it was best to avoid her having to do anything last night, I didn’t even eat.

I have now been sorted out and changed and am back in my chair. But I guess this one is just a reminder that sometimes the people you care for suffer to make things easier for the person caring for them.

This may be something to keep in mind when you’re struggling as a carer. Remember that you had some level of choice in being a carer, the person you’re caring for had no choice in being disabled. And sometimes they feel bad about needing help so try to what they can to help make things easier.

I have one question, would you sit in your own bodily fluids in order to make things easier for someone else?

Forgive me if part of this doesn’t make any sense I wrote the post the day and planned to post is. As always let me know if there’s any mistakes that mean the post doesn’t make sense.

Is it wrong to always believe I’m right?

On By Katy DalyIn My Disability Truth1 Comment

The other day, one of my carers said, I always believe I’m right, and she is right most of the time I do believe I am right, especially when it comes to things about my personal care, physical, well-being and health. Don’t get me wrong, I will take on the advice of others, but generally I believe I know what I’m doing with my own body.

The way this carer phrased it was as if this was a bad thing, I don’t think it was. She tried to say that she’s been a career for a long time and that means that she knew me doing something a certain way would be best. I told her that I have been disabled for a long time and I know how my body works.

While this conversation made me uncomfortable I don’t think I’m wrong to say I know best for me. While they may know certain things about caring in general, they don’t know my personal situation better than I do.

I really don’t think it’s bad that I trust myself enough to think I’m right a lot of the time. In fact I think that it’s very important that I believe in myself enough to know that I am right about things. There was a time when I didn’t have anywhere near enough confidence in myself to believe in myself. It took time to trust I was right, and I don’t want to feel bad about it.

Honestly I think carers need to remember that caring for people doesn’t give them the same experience as living with a condition. It might not be my job, but it is my life.

I’m sorry. It’s been a long day.

On By Katy DalyIn My Disability TruthLeave a comment

If you read my previous post you’ll know that I had plans for what today’s post was going to be. But I’m here to tell you those plans have now been forgotten.

I’m still up. I’m still out. My brother had a concert to go to, and the tickets were booked before he had a mobility aid that he now uses, and so the tickets aren’t accessible. He can manage without it with help, so I was left watching it tonight. Which is obviously fine. It’s just a very long day.

It meant that I have had to cancel my care in order to be out, and I have now been up for over 12 hours. Additionally I got wet in the rain this morning, and there’s no real way for me to get changed if I get wet in the day. That means I’ve been stuck slightly wet for most of the day, which isn’t great.

So I said it’s just been a long day.

The extra steps.

On By Katy DalyIn BlogLeave a comment

So I’ve been going to more concerts and events lately, and while this is great, it means explaining my disability over and over again, and apply for the accessible seating and carers support. There is supposed to be one universal way to do this, but unsuprisingly some places simply won’t take it or have different ways to send the information they deem as necessary to them.

Something I’m applying to currently has taken so long for me to sort out, that the tickets in the area that I wanted have now gone. This means that my sister who was supposed to be going as my carer, now may not be able to sit with us. And honestly this defeats the point of carer when you think about it.

Hopefully I am able to get it sorted, but we’ll see. But this one is just a reminder of the extra steps that exist in doing pretty much anything when your disabled, and the reality is that even when you’ve done all of them you might not be able to go, or you might not be able to sit with the people you wanted to go with.

To explain this better I’m going to include a list of all the extra steps I had to take in order to get tickets for this event, simply because I am a wheelchair user.

  1. Firstly, I had to find out if the venue was wheelchair and scooter accessible.
  2. Secondly, I had to ensure that the venue would support both someone in a wheelchair and a mobility scooter sitting together. I did clarify this in step one, but as usually the view on disability is so limited in society, that they didn’t understand what I was asking properly so I had to ask it again. I was then able to buy the tickets.
  3. I had to find out if they would accept they offered careers tickets. They do, but not all events do, which is bad when you realise that whether a person does or doesn’t need a carer is not dependent on whether the venue offers the carers ticket. If they don’t disabled people will often have to buy a ticket or several tickets depending on there needs, this is part of what is known as the disability tax, the extra cost of being disabled in society. It is real believe me.
  4. After finding out they would accept the proof that I have, I had to send it to them.
  5. As per this venues rules, I then had to purchace another ticket for my carer, which as you know lead to me writing this post, as I have not been able to do this yet.

This is 5 extra steps that I have had to take, so far, in order to attend this event. And believe me when I say this has been one of the more simple events to figure out the accessibility of.

If the world was more accessible as a whole, and disability was simply viewed as part of the norm, I and many others would not be having to deal with this simply to have some fun.

Please forgive me if the spelling isn’t to accurate on this post, I used a public computer, so the settings aren’t exactly right for me. That said, as always do let me know if any mistakes impact the clarity of this post.

Childless not by choice.

On By Katy DalyIn My Disability TruthLeave a comment

My carers asked me the other day if I could have kids. I’m used to the questions about my condition people like to know and I like to tell, but I don’t like that one. I answered it, because it’s easier just to answer it. But I hate being asked it.

Technically, medically speaking there shouldn’t be a reason I can’t have children but life is so much more complicated than that. The question is just hard and I wish people wouldn’t ask it.

I’m really struggling today.

On By Katy DalyIn My Disability TruthLeave a comment

Do you ever get the feeling when you’re up in the morning that the day is going to be a long one. As I write this that’s how I feel this morning.

I’m going to struggle today, emotionally.

My carers backed me into a corner this evening. It didn’t feel very nice. Saying the only way they could come later was by me not having a shower this evening and I have a lot to do today so I can’t have them come early.

My life feels like I constant compromise, my life is a constant a compromise. But today for reasons I don’t quite understand. Its really difficult for me to deal with this emotionally. Today’s going to be rough and I’m going to be on edge.

Out past curfew.

On By Katy DalyIn BlogLeave a comment

Now don’t get me wrong I don’t technically have a curfew however the care that I need usually means I have to be home for a certain time. At least as I begin writing this I am sat on the bus, several hours after this time. Though by the time I finish this post I will likely be home. As my journey on the bus is short so I don’t think I will have the time to finish the post before I get off.

I do apologise as I finish writing this it is in fact the next day. That is the cost of staying up late. I slept 11hours and woke up tired. Not forgetting that ih the middle of this I had my care.

It’s odd getting to be our when you want to be, especially when your body isn’t used to being out. Your brain is like woo, we’re out being an adult, this is awesome. Your body I’d like when do we get to go to bed?

My body is used to the curfew pushed on to me. This makes it hard fo brake even when I want to, despite never wanting it in the first place. This makes it seem like I choose the curfew even though I didn’t. Then it can be even harder to argue not needing it. Though in all honesty while I don’t need or want the curfew because I have carers I will always have it.

So my care is changing again.

On By Katy DalyIn Blog7 Comments

So, my carers told me this evening that my calls will be changing again. Specifically, they said that someone else will be coming in the morning, but they did not know who. The problem isn’t really that someone different is coming, though that can lead to awkward situations, it is that I don’t know if they will be coming on time.

Often my carers take it upon themselves to decide that my plans can’t be important enough for them to need to come as early as my call is scheduled for. Essentially this comes down to their belief that I as a disabled person can’t have plans that are important enough for them to come on time. There ableism is obvious to me even if they don’t see it.

So anyway, the result of this is I may not be able to do the things I have planned to do tomorrow if my carers are late. Not that they seem to be bothered.

Honestly, call me a hypocrite or whatever you want because I don’t work myself. But I don’t know any other job besides home care where people do not take times seriously. They literally don’t think disabled people have anything to do, it’s beyond frustrating.

My care is specifically provided by a company as it would take a lot of individual carers to ensure the consistency in care that I need, and this would be incredibly difficult to find. However, the downside of this is that they can change my care whenever they want, like they seem to be doing a lot lately, and there is nothing I can do about it.

This is one of the several reasons that I don’t have a job and would find it incredibly difficult to get a job. Namely, due to the inaccessibility of the world around me, which my carers do not help with. Though they are necessary, they make the problem of inaccessibility worse. But the fact they are necessary means there is nothing I can do if they literally will not get me up on time in the morning. Yes, I can complain, but that won’t get them there on time.

Anyway, lets see what happens, and if I get to go out tomorrow.

If I could do it myself.

On By Katy DalyIn My Disability TruthLeave a comment

Do you ever get that feeling that if you could do something yourself you would be able to do it properly?

Not in a way that’s meant to disrespect anyone, but more in a way that they just don’t understand how you like things doing?

This is the case for me with almost everything in life.

Due to the physical help I need, almost everything that requires you to physically move, with any regularity, strengths or consistency, I need help with. And the fact that I understand this, and the world around me, in great theoretical detail. This leaves me almost constantly in a state of frustration and compromise.

Today I lost one of my earphones. I dropped the case and one fell out. And while my sister looked for me, she got increasingly frustrated and couldn’t find it. I wanted to keep looking for it as I know its somewhere in my room. But there’s only so far that I can ask her or someone else to continue to do things like this for me.

Update: Immy got my earphones. I ordered new ones.