Tag: Asking For Help

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.

Doing what you can.

On By Katy DalyIn My Disability TruthLeave a comment

I think when you need a lot of help from those around you, being able to help them can be something even more important to you than most. I don’t really want to say it feels like like paying them back, because that suggests that you should have to pay those that helped you back for that help, and of course you shouldn’t. But if I’m honest with myself, it does feel like that.

So when I’m able to help someone, I push myself to do that more than I should, and perhaps more than most would. Sometimes doing this can be to my own detriment, as was the case yesterday.

We ended up having to get a taxi part of the journey home from the concert on Tuesday. While this was in part due to public transport ending before the concert had finished. It was over a distance that I would normally be able to travel in my chair. But because of things I had done earlier that day and having thought far enough into the future, I ended up with very little battery in my wheelchair and would not have been able to make the journey.

Earlier in the day I had ran errands for a family member whose car had broken and needed things picking up. This person is not able to travel without their car as they are unable to walk long distance.

It’s a learning experience when you’ve always been disabled watching those around you become disabled. Watching how they react to it all, how they adjust to their new normal. And sometimes unfortunately how they give themselves to grace they never gave you.

But not to dwell on that. Here was something I could do for someone who has done a lot of things for me regularly in my life. I just didn’t think through the consequences of helping them.

That is honestly a really frustrating part of being disabled, when others need your help, you still have to consider what you are able to do within the capabilities of your condition and situations. Sometimes this means you are not able to do everything you want to be able to do for them. It’s one thing to let yourself down, it feels so much harder to let other people down.

So I was going to do what I could despite what it cost me. And in all honesty I didn’t even realise until it was too late. But it’s not the end of the world, I got home okay and had a great night. And I managed to help someone, so that felt good too.

I just wish that wheelchairs could be charged using USB from a powerbank. That would honestly be the most helpful solution so my wheelchair is never able to limit my independence due to its charge Maybe one day it will be possible. 

Needing help for everything.

On By Katy DalyIn My Disability TruthLeave a comment

I’m just tired of it, of all the little things I have to sort out for someone else to do just because I can’t do it myself. And for having to pay for those things to be done.

I just wish I didn’t need so much help, I wish I could do what I want to when I want to. I wish I could be in control of my own life. Sometimes it really gets to me.

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.