Tag: Carers

You have to see the future when you need help.

On By Katy DalyIn My Disability Truth2 Comments

We all have bad days, if you’re lucky you just have a few bad hours, like I did this evening. But when you’re disabled, more accurately when you need others help, that’s not allowed to happen.

If things go wrong and you can’t run on the schedule, they’ve decided for you, they’ll make you feel bad about it. That’s the worst bit, as it wasn’t even the schedule I wanted to be on. They were running early, and I had one of those nights where everything just seems to go wrong, so I wasn’t.

There’s no room for things to go wrong when you might make other people wait for you. There’s no one understanding that just like everybody else is something you can’t control, but when you’re disabled, there’s a lot you can’t control, it’s still your fault though.

You should’ve known that your chair would get stuck on a wire, or your dogs lead will get caught in your chair. Or a random other dog would start barking at you twice in the same walk, and not really want to leave you alone. You should have known all these things would happen, before you even left the house. And plan your time accordingly so that you wouldn’t make them late. Not to make your life easier, it’s never to make your life easier, it’s always for them. The people that help you, the people you have to be grateful for. The people who think that God’s gift to earth for doing their job. They will always matter more than you do. They can have a bad day, they can run late, you can’t. Don’t you know, disabled people are not allowed to have a bad day. We’re not allowed for life to go wrong, we already cause enough trouble, we have to keep it going right, and it’s our fault when we fail.

One of the most frustrating part of all of this is that my car didn’t even run over, though you wouldn’t have known that from the way they were acting. They were still out the door before my call time even ended. But that’s not unusual, carers never expect to stay for the full call you’re entitled to. To be honest, I don’t really want them to either, it seems silly just to have them stood around when I don’t need anything. But maybe what that’s why they think that my call time as a whole doesn’t matter, because they never have to stay for it anyway. I don’t want turn into that type of person that makes them stay, but for once I’d like to not be made to feel bad for things going wrong that I couldn’t control.

Another annoying thing is despite this these are the best carers I’ve had in a long while, if ever. and still, I feel like I work more with them than they do with me. But I don’t want to risk losing them, because while I could say that’s what they deserve, I would be the one that would have to suffer. I need them, the truth is they don’t really need me.

I know to them as a job, but to me is my life, and sometimes I just wish I would respect that. Out of all of us involved in this transaction, they are the ones that made the choice to be part of it, not me. Am I really asking for too much? I don’t know anymore. I just don’t want to fight to get out of bed, or into it as was the case this time.

First night.

On By Katy DalyIn My Disability TruthLeave a comment

Tonight is my first night in my home alone.

My sister, who I’ve written about here before but tried to be vague with, has moved out. She was my carer but is now pregnant and therefore can no longer do that. In order for the flat to be accessible to me it is also cannot be made safe for a baby, so she had to leave.

It’s been complicated, but I would be lying if I said I wasn’t relived that I am alone now. Which is weird because I didn’t expect this level of relief, if I’m honest. I thought I would be more anxious. But instead I feel good. And the house isn’t even completely mine yet. I’m looking forward to how I’ll feel when it is.

Chocolate

On By Katy DalyIn My Disability Truth, My WritingLeave a comment

What snack would you eat right now?

At least that’s what I said even though it wasn’t really what I wanted. What I actually wanted wasn’t even food, but a lot of the time I don’t feel like the things I want are important enough for me to ask for. \

What I really wanted was for my little girls polar bear teddy to be moved so that it sits over her urn correctly. I don’t think really that’s too much for me to ask for, but I know that the person helping me will think that it is. So I felt I had to make up something more acceptable that I needed there help with, like the fact I wanted some chocolate.

That is one thing I’ve learnt after having a lifetime of help from others, people will judge you for the things you need help with. They might still do the things you ask them to do but they will be very strange about it, and if you ask for to many things that fall into the category, they will simply choose not to help you anymore.

When you need a lot of help from others, you have to have your life run by them. It all ultimately comes down to what they will actually do for you, if they say no, then you are stuck.

I don’t think people really understand what that is like until it happens to them. It is really hard to grasp what it is really like to have everything in your life controlled, and as a result at least in some way judged by other people.

It’s difficult to believe I have a right to have a say in anything in my life, when I know anything ultimately comes down to others. That is why I struggle when people ask me what I want in any situations, because it just feels like that ultimately doesn’t matter.

Anyway, as for now I have the chocolate, so I’m going to eat some now at least.

When you don’t like being around people but you have to be.

On By Katy DalyIn My Disability TruthLeave a comment

One part of being disabled that people don’t talk about is the fact you have to be around people that you really don’t want to be around.

There’s no, I don’t want people like that in my life, when you need that person in your life. Cutting them off puts me in danger.

I’m not really a people person, but I’m forced to be a person that is always around people. I’m always waiting on people, waiting on them to do everything for me. To get me up in the morning, someone to make me food, to get me a drink.

And I’m supposed to be grateful. Always. It can never be to much that they’re helping me, while something I need at the same time. That just doesn’t make sense to people, when I’m getting the help I should be grateful, always.

The minute I’m questioning how they do it, asking for something some a specific way, or just having a bad and seem off when being helped. I’m not being grateful.

Did she shut the door to keep me quiet?

On By Katy DalyIn My Disability TruthLeave a comment

I hate being disabled sometimes. I categorically hate it. It’s a visceral anger that I don’t know what to do with.

I realise recently that it mostly correlates with when I am placed in situations where I feel like a burden for reliant on others. Like I can’t change anything else, but I can be mad at myself for being in that situation. And at least that’s something, even if I know it’s not healthy. And unfortunately the person who I am heavily reliant on has an annoying habit of making me feel this way.

This leads to me feeling so broken for ever needing help, like I’m the worst person in this persons world, there biggest inconvenience. And they’re treating me like I forced them into a situation that they agreed to live in.

It’s not my disability that makes me feel like a burden. It’s always others.

Living alone.

On By Katy DalyIn My Disability TruthLeave a comment

So first I want to apologies for my absence. It feels weird to continue life after losing someone close but life continues to go on whether you like it or not, so I’m trying to get back into this.

So the person who I live with is pregnant, and they are looking at moving out. So that leaves me at least eventually when they can find somewhere to live, living alone. And while there is no time scale on when this will happen, I’m still trying to plan for when it will happen. For whatever living independently is going to look like for me.

But living independently for me also means living with a dog, I can’t imagine my life without my babies. But one of my carers is very concerned about my ability to manage and in all honesty it’s getting on my nerves now. I’ve not even started trying and she’s already expecting me to fail because I’m disabled, I just don’t think that’s fair.

Sure it’ll take some working out, but I can do this. And I’ve got time to work it out. The only problem I can see is that she sometimes goes to the bathroom in the kitchen in the night. This is something I can clean up once I’m up, but obviously I won’t be up until the first time the cares have been in the morning. And if it really bothers them they can get stuff ready including water the night before, the bathroom is through the kitchen, so they won’t have to go through the kitchen until I’ve had the chance to clean everything.

I literally cannot think of another issue with having her that I can’t solve.

Any anything that might be a little more difficult is just worth it to have her, to live with her, to have my baby.

I deserve comfort and love. And a chance to live my own version of independence and for me that includes living with a dog. I don’t think that’s unfair, even if she sometimes goes in the house. It’s not like I have no way of cleaning it at all or I’m asking them to do it.

Anyway I have time to sort this. I just wish people would leave me to my business, and at least let me try before they’ve decided I’ve failed.

There’s a lot of change in my life lately, none of which I have been able to have a say in. And it’s very annoying to have people judge how I’m dealing with it all, when I’m just trying to do my best.

Image Description: A picture left to right of my yellow Labrador, brown and white caviler King Charles and grey cat all lying or sitting on my bed on a blue blanket. Behind them is two asexual flags on the wall.

I’m hungry.

On By Katy DalyIn My Disability TruthLeave a comment

Early this evening I was too tired to eat so I fell asleep. Now I’ve woken up, and I’m hungry. But I don’t want to wake someone up for help.

I know I could but it feels mean. I find myself sat here waiting to catch them when they wake up for food.

It’s silly really.

I should have eaten earlier.

The email I don’t want to reply to.

On By Katy DalyIn My Disability TruthLeave a comment

I’m actually sat here writing this post to avoid replying to the email just that little bit more. That’s how much I really don’t want to do it.

It’s a response to a previous email about something called Disability Related Expenses, which is essentially extra payments I have to make because of my disability. It’s part of what I and other disabled people have referred to as the disability tax, but it’s a lot more official. And I really have to prove everything I say, in order to get my payments towards my care lowered.

While I abstractly understand why I have to prove these costs, because I simply can’t just claim I pay for something that I don’t. In practice it’s something I hate doing.

Proving my disability just makes me feel very disabled. It makes me feel judged. Like they think I’m lying in some way that I know I’m absolutely not lying. Like they’re waiting for who I am to trip me up. To judge whether I’m disabled enough to not have to pay for care that I obviously need.

And really that’s the hard part, the fact this is all about a payment for something I need but don’t want. And as someone who doesn’t earn, it’s not something I think I should have to pay for in any way. But yet I do.

I need to write this email. I need to get it done. I just really really do not want to.

Society really is the worst part about me being disabled.

Can I live alone?

On By Katy DalyIn My Disability TruthLeave a comment

Honesty I don’t know. And that might be a question I have to answer sooner rather than later, given the current situation I find myself in.

There’s lots of factors to be considered here, but with this post I will be focusing on whether I could do so emotionally rather than practically.

I don’t know if I’m more worried to try just because it’s scary to do new things or because I’m scared I won’t be able to do it.

It’s hard sometimes being so physical disabled, being so reliant on others, and being so acutely aware of just how reliant you are. I think the push to possibly living on my own is a reminder of this. And the fact that it’s not exactly on my terms makes it all that little bit more emotionally challenging.

Trying to be helpful.

On By Katy DalyIn My Disability TruthLeave a comment

So today, I pushed myself to do a lot, I went out of my way to be there for different people in my family. And as my wife always runs on the schedule of my carers, I had to fit doing what I could into them.

Honestly, that’s one thing. I don’t think people consider about getting carers, is how regimented your life has to become as a result. You have to do things at the same time every day regardless of what is thrown at you during that day that might change that. On this day, it was simply taking something that had been forgotten by one person to another, but I had to fit that into everything else I had to do and fit that into my care as well.

I like to do as much as I can for other people, it’s probably some internalised ableist part of me that wants to feel useful because I need so much help off others. As there isn’t much I can do for others, I want to be sure that what I do I do properly.

As I have to get public transport everywhere this can be quite difficult to do when it involves going to different places as it did today. But I do the best I can, and just hope I’m useful.