Tag: Help

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.

Independence is time dependent.

On By Katy DalyIn My Disability Truth2 Comments

I’m sitting here unable to sleep because I need help but I cannot get that help until the morning.

When a key part of your independence is needing help from others, you have to wait till they’re ready to help you, to be independent. So it can feel like you have zero independence at all.

Now I don’t have the emotional ability right now to argue how I’m still independent despite needing help and others are just a tool to get me what I need. I’m really struggling right now I feel so broken.

I tell myself I’m an independent person, but right now I’m not feeling that independent. I feel like a child who needs help with everything.

There was going to be more thought into this post when I started it. But I think the lack of sleep from an incontinence incident that I’m stuck waiting for help with is getting to me.

I don’t wish I could walk, it’s all the other things I can’t do because of my disability that get to me honestly. Like all the help I need. Like having to wait for others to help me. Not getting to do what I want when I want to do it.

It’s just hard right now.

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.

Freedom.

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

What are the most important things needed to live a good life?

I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.

Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.

Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.

Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.

A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.

I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.

By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.

When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.

I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.

My carer

On By Katy DalyIn Writing PromptsLeave a comment

Who do you spend the most time with?

To be honest I wanted to say my fur babies, and be more positive with answering this question, but then I thought about it.

I thought about the fact that I can’t really be left alone for long. That when I am more than not something happens that I need someone’s help for. And how that means that I often spend a lot of time with the person who carers for me more than anything.

Often I relish the small amount of time I am able to spend on my own, with my own thoughts. As it doesn’t happen often, where I feel completely comfortable, I truly enjoy it.

Sometimes I just really wish that I didn’t need to be with someone all the time. That I could manage the little things in life myself.

Waiting.

On By Katy DalyIn My Disability TruthLeave a comment

I’m currently waiting for the person I live with to get home. There is a chance they may not get home before my carers and I’m worried.

I’m torn, because I feel bad at them for ruining late at they know how important it is for them to be home for this time. But also I feel like because they care for me I’m not allowed to be mad when they do this.

What is it they say, don’t bite the hand that feeds you?

Well I never wanted to be fed, but I don’t want to starve.

I wish I didn’t have to have so much to do with people.

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My carers were off with me this morning. They complained about things I couldn’t change and it’s really gotten to me.

It’s got me spiralling a little bit about the things in my life that I cannot change. I didn’t choose to live in a house with a garden that I can’t look after, and yet I feel like they’re punishing me for it.

I can’t change my situation and I feel guilty for it.

I don’t want to be around so many judging people, and yet I am forced to be because of the help I need. And at the minute it’s really bugging me. 

To good to be true.

On By Katy DalyIn My Disability TruthLeave a comment

I shouldn’t complain really because thankfully I’ve had help to fix it. But I had to pee on myself today, of all days.

I don’t think I can explain how much this artist means to me. How much it means for me to able to see them.

They were the exception that proved the rule. They were the ones I was willing to suffer in an inaccessible world just to be able to see.

Your music is life.

Thank you.

I couldn’t get in my chair today.

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That’s sort of a lie. I was in it for maybe an hour? It just hurt to much.

There’s something not right with the cushion on the chair and it leaves the bar digging into my legs in a way that gives me pins and needles.

The immediate problem is fixable by getting out of my chair and moving the cushion forward. But there needs to be a bigger problem before I call and ask for help to fix the wider issue of the cushion moving. At least that’s what I tell myself, maybe I’m wrong and making myself suffer. I don’t know. Thanks anxiety. I just don’t feel like this is a big enlightened problem yet to get help with.

Today I just got out of my chair again, into my other chair, which to be honest has its own problems but at least doesn’t cause me as much pain.

I’m honestly tired of needing these mobility aids. Of the guilt I feel when they brake and needing help to fix them. But this is me for the rest of my life and I know that I have to accept that, it’s just hard.

I wish I didn’t need all this. I wish I could solve my own problems. To be honest I really wish I didn’t as much help as I do. Needing help consistently takes its toll. And I can’t just not have help for a while. I can’t have a brake from needling someone, from being disabled.

The best I can do isn’t always what you ask of me.

On By Katy DalyIn BlogLeave a comment

I’m getting my hair done over the coming days, and I’m worried.

I’m worried because I can’t follow the guidance exactly how I would like to. But I’ve tried my best. I can only wash my hair on certain days in the week and in the evening, due to my carers. But this isn’t something that someone would know about me without me saying. And don’t know how I’m supposed to bring that up to people who don’t me.

When you need help to do things, doing things when you want isn’t always an option. But I do my best.

I have to deal with the anxiety of this alongside the anxiety of having someone new cut my hair. This is the first time I will be paying for someone to come to my home to do it. As the family members that usually do it are unable to do it right now, or ignoring me.

I don’t want to risk going to a standard hairdresser as I’ve done this before and it’s been difficult due to accessibility.

Once I rang a hairdresser to ask if they were accessible, and they assured me that they were. However, when I got there, there was a step outside the building.  I questioned this and their answer was that once so was inside the place was accessible. I pointed out that I couldn’t get inside due to the step. Their solution was to give me a free coupon for that Salon, the one I couldn’t get in.

So I don’t want to risk that again. This is why I’m using a mobile hairdresser. But it doesn’t come without concern for me, nothing seems to come without concern.

I have told them I am in a wheelchair, but I worry that they will just forget that. That they will say they can’t do it because I’m in a chair, or for some other reason I haven’t thought of. 

Logically I’m sure it’ll be fine, but I’m still worried.

Anxiety sucks.

And I just wish that I was able to go into a regular hairdresser and get it done somewhere where I wouldn’t be a problem. 

It’s difficult when dealing with a world that’s so inaccessible to you, to not blame yourself for the reason things are so difficult. Logically I know this is not my fault, but emotionally which is the side that always seems to win, its so much more difficult to deal with.

But getting my hair done seems worth it. After it’s done I just feel like I can breathe, if that even makes sense.

All this said, wish me luck for tomorrow. I honestly feel like I need it.