Tag: Asking For Help

You have to be able to think into the future.

On By Katy DalyIn BlogLeave a comment

When you’re disabled, you have to be able to think not only about everything you currently need, but about everything you might need being left alone.

As I write this, I am sat at home hungry because I didn’t think about the fact that I would want food when earlier I wasn’t hungry. And because I am home alone, I’m not able to get food until the person I live with comes home. Therefore I’m just hungry, and essentially waiting for someone to come feed me.

If I had thought about it more, I would’ve had something to eat before they left or been left with something like crisps that I could eat on my own, but I didn’t. I just spoke to the person with her basically blamed me for not asking for something to eat before they left. But then I wasn’t hungry, and I wasn’t thinking. It’s hard to ask for things that you might need when you don’t need them. And the only person that suffers when I don’t do this, it’s me.

I don’t think anyone who isn’t disabled has to think like this. Sure there are sometimes when we all have to think and plan for the future, but when you disabled you have to do it nearly all the time. And that doesn’t make me any better at it just because it’s more important to me. You would think it would, but no.

I hate that even the basic things in life aren’t accessible to me if I haven’t thought ahead. And I hate that if I don’t think about this, I’m the only one that suffers for it.

I’m hungry.

Send food.

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.

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

On By Katy DalyIn My Disability TruthLeave a comment

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. 

I couldn’t get in my chair today.

On By Katy DalyIn My Disability TruthLeave a comment

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.

Nighttime.

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I want to be alone a lot of the time, at least I think I do. But my disability means that the times when I’m alone are often the most debilitating for me.

Take now for example, as I write this post I’m lay in bed, and I find that one of my chargers isn’t working. I have other wires but they are not where I can reach them myself. And while I could wake the person I live with, and they wouldn’t mind, this is not something I deem important enough to wake them after 12 o’clock at night for.

In the past when I have had a problem, but not a serious enough problem, I have created bigger problems that I deem worthy of asking for help for. For example dropping my bed control, without which I am unable to move in the night, which causes so much pain that I am unable to sleep. But that isn’t something I will be doing tonight.

No matter how much I find myself wanting it, being alone reminds me what I am unable to do on my own, it reminds me just how disabled I am. Being alone for any long period of time is always going to inaccessible to me. And sometimes, like right now, it is difficult for me to accept that reality.

I wonder if I do you want to be alone or if I just want to be able to do things for myself? Or if what I really want, is others not to have to do the things for me. While all those things sound the same, I don’t think they are. Wanting to be able to do things for yourself and not wanting other people to do them for you or different. One is about independence the other is about being a burden to those around you.

But when you can never be alone for any meaningful length of time. When you always need the help of others to do the simplest things. You are always going to be a burden, or at the very least feel like you are a burden, in some way or another.

Maybe the reason I want to be alone is because I don’t want to feel like a burden to anyone. And when I’m alone I can’t ask for help, so I can’t bother anyone, so for a little while I’m not a burden.

Not being disabled will always be inaccessible to me. And that means the life of those who aren’t disabled, the life of true freedom and independence, will always be as well.

So why call this post nighttime?

Well, if it wasn’t obvious that tends to be when I am alone, the most thanks to my messed up sleeping pattern. I’ve heard it said before that nighttime is the worst for your emotions, as this is when they are free to control you. And honestly right now I would have to agree.

Nighttime is when I am alone. Nighttime is when I realise being alone is inaccessible to me. Nighttime is when I cannot sleep.

To my phone. 

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Where would you go on a shopping spree?

I know that online shopping has its criticisms, but for me it’s the most accessible form of shopping.

It’s a type of shopping I am able to do on my own. I can by whatever I want, with in my budget,  and have it delivered to my house.

I can manage in a standard shop, but there are usually some points I’m forced to ask for help. And I’ve worked on that to the point where my anxiety doesn’t stop me doing it anymore. But it doesn’t mean that I like to ask for help. So ways to avoid it are always good.

There’s a hole in my pants

On By Katy DalyIn My Disability TruthLeave a comment
Image Description: Two fingers spread around a small hole in a black pair of pants. There’s also a lot of dog hair visible in the photo.

Now I’m aware having a hole in your pants isn’t a big problem, but it is problem that I’m not able to do anything about. And that makes it worse than a larger problem I could solve.

Once I’m dressed in the morning, I cannot get changed until Carer comes in the evening. The person I live with cod, undress me but not put any clean clothes on me. So I have to decide that I don’t need to go out for the day before I get them to do that.

While it would be possible for me to get more care in the day, in fact, this has been suggested to me several times. Getting another call would mean that I have to stay home or home in the middle of the day. I already have to be home for a certain time in the evening, I don’t want to sacrifice more control of my life the fact I need Carers. I don’t even like to leave the house, and that’s a whole of the story. But I really appreciate the ability to leave if I want to, and I’m nervous of doing anything that could take that away from me.

And then there’s the cost of my Care and what would happen if I cost the system too much? And while there is an issue, I try not to think about. It is something that is on my mind when considering how much help I will take from the government. I’ve seen the horror stories. And I’m not prepared to give up my babies.

Regularly needing help from others comes at a price. This price can look different for different people, but it is always there. Just be aware of this when you think somebody has it easy because they have everything done for them. I would much rather be able to do it all myself,,whenever I want, the way that I want.

I am aware that this is such a stupid insignificant problem, and those are those are the ones that annoy me most. I think because I know that if I want to disable, I would be able to solve them.

Here’s hoping that the worst problem I have today is a hole in my pants.

I hate dropping things.

On By Katy DalyIn My Disability TruthLeave a comment

I often drop lotto things on the floor that I can’t pick up myself. It bugs me and there’s nothing I can do about it. The person I live with doesn’t notice little things on the floor, so asking them if they can see anything on the floor isn’t a completely fool proof way to find out if there’s anything on the floor.

Relying on people is emotionally draining. Even when you know they’re trying their best. In fact I think when they’re trying their best it makes it worse, as you know you logically it’s not fair to be annoyed at them.

So I become annoyed at myself for being unable to solve my own problems and therefore relying on them.

I don’t cook much.

On By Katy DalyIn Writing PromptsLeave a comment

What’s your favorite thing to cook?

I love food. But I don’t cook.

I love potato, seasoning and spices. But I can’t cook.

So if you’re asking what my favourite thing to cook is, that’s almost a mute question.

But that doesn’t mean I don’t get to love food.

Remember you don’t have to be able to cook to enjoy food.