Tag: Carer

Why 15 minutes matters

On By Katy DalyIn My Disability TruthLeave a comment

I got home 15 minutes before the Carers were due, they were early, they arrived as I did.

The time I go to bed is already a compromise for me. To compromise further is frustrating. Not least when I haven’t planned for that compromise.

It comes down to the fact that no one expects disabled people to have plans. Our time is not respected, yet we are eternally supposed to respect others.

You wouldn’t like the amount of compromises disabled people have to make, on a daily basis just to live our lives. Never mind so that we can go out and have fun.

This wasn’t even the only compromise I made today. I sat on my own poo for hours. I was damp most of the day. And yes, I still had a great day. I don’t regret doing it. But it did cost me. Sometimes I just wish people would respect that.

The cinema is interesting, I can’t sit directly with those that go with. And yet today the seating put them out a little, they got to experience what I do every time we go

If people could just experience small amounts such the reality is that disabled people have to deal with I think they might look on our situations differently. Maybe that is too much hope. I don’t know.

I just wish I could have one day that didn’t feel like it was in some way, but my disability. A day where I could do what I want whenever I want to. Without having to consider other people, at every single point.

“Last thing”

On By Katy DalyIn My Disability Truth1 Comment

It might come as a surprise that I still need help whether or not you are tired. I don’t like it, I wish there was something I would be able to do so that I didn’t need your help for things, but there isn’t.

Sometimes I need your help when you are tired, and sometimes I need your help for multiple things, and I might also need your help for multiple things when you are tired.

I don’t get to choose when I need help, and you did already agreed to help me. You had other options for life that did not involve me so why do you have to pretend like this is something that just happened to you and not something you chose?

We all have off days, but when you care for someone you also live with the days can be very personal. You agree to help them whatever your mood.

I’m sorry this was going somewhere, but the fatigue is kicking my ass as i try and write so this is all I’ve got.

The little lies.

On By Katy DalyIn My Disability Truth3 Comments

Part of being disabled (at least for me) is that I have to trust what people tell me. And for reasons I still don’t understand, they often lie to me.

It’s not big lies, usually. It tends to be just telling me something is washed, or clean, or has been picked up when it hasn’t. Or maybe they looked somewhere for something it’s not there, but when I and look for it it’s very obviously in the place where I said it was. Occasionally the lies are a bit bigger, being told a place is accessible when it isn’t, or being lied to about what the accessibility of a venue is like.

I just don’t understand why people don’t tell me the truth. While the truth would still be frustrating, it’s not more frustrating than a lie. When you rely on people to help you, being lied to is a lot worse than you might realise.

It makes it hard to trust people, when you don’t know if they’re lying to you. And you have to be able to trust people when you’re disabled, my life wouldn’t work if I couldn’t trust the people that I need help from.

But even when they lie to me and I know I can’t trust them, I still need their help. And that can be hard to live with emotionally.

I just can’t really understand how hard it is to tell people the truth.

Starting regular medication.

On By Katy DalyIn My Disability TruthLeave a comment

Before I get all weird about this, I’m going to say it’s just eye drops, so it is really me being a little be extra about all of this. But this is my blog, so the only place as I get to do that.

All my life different medications have been pushed on to me. This is the standard treatment for your condition etc. So as soon as I was old enough, I decided that I would not take any medication or anything like that until I understood exactly why I needed to take it. This for me extends to creams, drops, painkillers, muscle relaxers, anything.

To be clear I’m not against medication, I will, and have taken antibiotics. I will finish the course. I will also take painkillers and muscle relaxers if I deem them necessary. But taking preventative things is not something I like to do.

Muscle relaxers for example, work best when taken regularly. But it was hard for me to take them regularly when there were days when I wasn’t in pain and it just seemed silly for me to take them. Specifically where muscle relaxers are concerned they would make me drowsy and as I already have fatigue, I have just never found the side effects worth it.

I have always been very aware of the likelihood of me needing to be on some sort of medication at some point in my life, so I didn’t want to start taking things earlier than necessary. Part of this is because I know that medication can stop working if you take it for long periods of time, so I have always wanted to be sure I definitely need to take something before I need to take it.

So the need for the eye drops have been explained to me, very well. And I will of course be using them, to protect my eye sight. But I kind of feel a little weird about it.

I feel like I have reached a milestone in my life, a weird milestone, but a milestone nonetheless. Given my disability getting this far in life without needing medication is something. I don’t want to say impressive because I know that taking medication is not a bad thing. But it’s starting now, for me, I guess.

It’ll be fine, I know. And I will get used to it, like everything else. But my first toe in the pond of regular medication, had to be something I needed help to do, didn’t it? I can’t do eye drops on myself. And that makes me just a little bit sad.

I just want to be able to do things for myself, but the list of things I can’t do for myself continues to grow. I know it’s not bad to need help, but it’s just hard.

As I said I know I’m overthinking this but I honestly can’t help it with this one.

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.

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.

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.

My care changed again.

On By Katy DalyIn BlogLeave a comment

So I got moved to a different run with my carers meaning the main carers I have will change. On the positive side the one that it’s changing to are actually able to come early in the morning. On the down side I had a really good relationship with the carers that I’m loosing.

One of the new carers is also someone I know outside of care, which was bound to happen, but is a first for me.

It can be a little disconcerting when my care changes without me knowing about it. Consistency isn’t something you get with care companies. Even when you do it can change at the drop of a hat. And as always, you dont get a say in it.

Choice is often conditional when disabled, if at all you have it.

But hopefully, with the better timings that these carers can do, it’ll all work out in the end. I am hopeful that by getting up earlier doing what I want with my life, will become more accessible to me.