Tag: Try

Sometimes the internalised ablesim hits later

On By Katy DalyIn BlogLeave a comment

So you may recall my post from late last week exploring (all be it briefly) a night out with my family. At the end of the night, one of the people outside of my immediate family that was present helped to get me into bed.

While they were helping me, it did not bother me as I knew that I needed their help at the time. I even let them have a go in my wheelchair and hoist. Any OTs that stumble across my blog, you did not read that last sentence.

In the days which followed, I began to feel guilty about the way they had to help me, even though they were the one to offer to help me.

Sometimes I wonder if the guilt of needing help will ever leave me alone you know. I don’t think needing help is bad of course, but sometimes the reality of just what I need help with is hard.

However I will still take the help which is an improvement from the complete avoidance, which is where I used to be at with needing help from outside my immediate family. In other words, I would just insist that I didn’t need the help, because of who it was coming from. At least now the guilt comes later, and it doesn’t prevent me from getting the help I need.

Remember you deserve the help you need, no matter how you feel about it. Your feelings can lie to you.

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.

I can’t find my cereal bar.

On By Katy DalyIn My Disability TruthLeave a comment

So as I often do when I can’t sleep at night, I was just reading one of those random facebook articles, and it mentioned someone who didn’t know how you were supposed to eat those cereal bars, you know the ones that comes with milk/chocolate in the bottom. This reminded me that yesterday or last night to be more accurate, my sister gave me one of those bars and I don’t remember eating it.

So now I am, maybe irrationally, worried that I have lost a cereal bar somewhere in my room. With two dogs I’m even more worried for there sake, I obviously don’t want them to have eaten it. I don’t think it would do them a great deal of harm, but I don’t want to find out the hard way that I am wrong, you know. And if they don’t eat it, which is obviously the better option, I just don’t like the idea of a cereal bar lost somewhere in my room.

The problem here, aside from the lost bar, is that I cannot go and look for the bar myself. As due to my disability once I am in bed, I am in bed for the night. Even if I was in my chair, I still wouldn’t be able to look for something I have lost properly on my own, though I would have a better chance of being able to do this in my chair.

I obviously cannot ask my sister in the middle of the night to help me find a cereal bar, that there is a chance I may have eaten anyway. When I say to help me find it, I’m being nice to myself, I mean look for it for me. She obviously would, but I make a point of not asking her for things in the middle of the night that are not completely necessary. And as much as this is bugging me logically, I know that it is not that important. I wish that would mean it would stop annoying me, though in my extensive experience of losing things I know this is not the case.

I think part of why loosing things bugs me so much is my disability, It’s the lack of being able to look for the things myself.

It’s the lack of control when something is missing.

It’s the helplessness from the fact that I am unable to solve the problem myself.

It’s the helplessness from needing someone else, as an adult, to help me solve what feels like such a simple problem that I wish I could solve on my own.

It’s knowing that no matter how much I want to be able to solve this problem on my own, I will not be able to do that.

So really what’s bugging me is not the cereal bar, it’s being disabled.

Not being able to walk has never really bothered me, well not much anyway. But it’s everything else that my disability leaves me unable to do. It’s all the missing things that are the hardest to deal with, like finding my cereal bar.

I will let you know, if I remember to post about it, if I end up being brave enough to ask my sister for the help I need tomorrow.

Sometimes I wonder if I ever do.

On By Katy DalyIn Writing PromptsLeave a comment

How do you relax?

Physically speaking my muscles are always tense to it is very difficult for my body to relax, this is part of my condition. So by that logic you could very easily say that I never relax.

Emotionally, mentally, I suppose I write, listen to music, watch crappy TV. There’s nothing I do to relax that is different from the way that anyone else relaxes.

I guess the point in relaxing is to do what you enjoy, and that’s harder than it may seem sometimes. But I do try and guess that’s the point.

Honestly I don’t know.

On By Katy DalyIn My Disability Truth, Writing Prompts3 Comments

How are you feeling right now?

Do you ever get that feeling where you feel so much you don’t know what you feel?

I’m not particularly feeling bad. Just overwhelmed.

I just had a realisation that I’m disabled, which if you know me will no doubt seem weird. But doing something differently seemed to help me, and I’m not sure how exactly to feel about that. I’m not one to like to do things differently.

Procrastination and little things

On By Katy DalyIn Blog, My Disability TruthLeave a comment

What may or may not be clear from my posts is that I don’t normally consider the title for them, but in this case I did. Writing this post is definitely me procrastinating writing the things I should be writing. But maybe just maybe writing this post will aid me in the writing I should be doing, but I guess we will find out once this post is finished and I get back to it. It’s funny how when you can’t write about one thing you are able to write about others, but this I suppose isn’t really relevant right now and may just all be part of my procrastination.

So, we had a moment this evening with what we think was a moth in a room and I told my sister to open my windows to see if it would leave, and I’m telling myself that it did. But anyway, as my sister was opening my bedroom windows that barely get opened, mostly because I’m afraid that we will forget we’ve opened them and leave the house unsecure, but anyway the point being one of them stuck. So, I thought my sister should try the rest of the windows in the house to make sure they also still opened, and one of them didn’t. It’s obviously not that important, as we don’t open the windows, but it is frustrating.

It is one of those frustrating things that I will probably get over at some point in the future, as I often have to do with the things that frustrate me, but it will just take some time.

What frustrates me more than the fact that there’s a problem with something in my house, is that there is a problem with something in my house that I am unable to fix myself. So really more than the frustration at the problem, the issue is the frustration at my own uselessness with the problem.

I feel this very often upset at the things I can’t do. Most people would probably assume that I have gotten used to things I can’t do in life, given the fact that I have not been able to do them since birth, that I have never been able to do them. That idea that you can’t miss what you never had. From my experience this is not true, not true at all. It simply something people tell other people who are struggling with these feelings, a platitude to make the ‘friend’ in the situation feel like they have had some input, like they have solved the problem somehow.

I definitely miss many things I have never had.

Even though I know that there is no point in me feeling this way, I simply do. Knowing that feeling the way you do is only hurting you, is not enough to help you stop feeling that way.

Of all the things I am unable to do, it is not being able to do the little things in life, to solve the minor problems, that cause me the most emotional stress.

I see people online who feel sorry for disabled people not being able to do what they seem to consider the most important things in life, like walking or having sex. Though the sex one I may not get because I’m Asexual rather than disabled, but still people have felt sorry for me as a disabled person presuming, I believe myself unable to have sex, rather than someone who does not want to. I could honestly write a whole post on Asexuality and Disability, or at least my experiences of it, but we’ll leave it there for now.  

The point I am trying to make is: It does not bother me that I cannot walk, it does bother me that I can’t open a stuck window.

Not being able to do the little things in life is a real emotional struggle for me, and probably will be for the rest of my life. I guess it’s just something that I will have to try to deal with, or at least cope with.

Anyway, for now I’m going to try to get back to the writing I should be doing. Wish me luck with it, I think I need it.

Family gathering

On By Katy DalyIn BlogLeave a comment

Much like the position I am in with the school reunion I have written about in a previous post, I don’t know a lot about the specifics of a family gathering that I was kind of invited to recently.

I say kind of because the specifics of the meeting were never decided, and I was quite clearly added as a second thought. We must invite her, that type of thing.

But when you’re disabled you can’t be invited to things as a second thought, they probably won’t be accessible. This I can tell you from experience, but I mean no malice. It’s just a fact that true accessibility cannot be an afterthought.

If I were to go to this family event, I would have to not get changed for the entire time I was there, we are talking more than 24 hours. This is not unusual for me to do in order to stay anywhere else other than my home but is something I am reasonably certain in saying that non-disabled people would be shocked to learn the specifics of.

The truth is if I don’t make sacrifices and do things that might seem weird to others, I would be excluded even more from the things which I want to experience.

Why is it so hard?

On By Katy DalyIn BlogLeave a comment

You’d think because you want to do things they’d be easy right? No such luck for me right now.

Trying to sort out what I actually want to write about and put the ideas into the world is so difficult. It’s honestly a little scary.

I keep avoiding it. I know it’s just something I need to sit down and do. I’m definitely the type of person who you need to lock in a room away from all the people to get something done.

My goal is this week. And I’m telling you guys so I’m telling someone and hopefully that’ll motivate me to get it done.

I promise I like what I do. It’s just hard sometimes.

This isn’t always an easy question.

On By Katy DalyIn Writing Prompts2 Comments

What do you enjoy most about writing?

But I feel like it should be. I love writing so much, the freedom it brings me and the worlds I can create are unmatched. But sometimes it’s so difficult.

Why is it so difficult? Why is it so difficult to do the thing I love so much?

How can something that gives me so much life, bring me so much dread?

I’m trying to do the things I love, to write about the things I love and the things that are so important to me. But I feel like I’m battling myself, and the rest of the world, all at the same time.

I just hope one day I make it, one day it gets easier. That said I’m not sure who I’d be without the fight, but I suppose that’s a future me problem.

This isn’t foolproof.

On By Katy DalyIn BlogLeave a comment

How do you plan your goals?

But is anything?

Is it just me or does anyone else feel like there’s a never-ending list of things to do, and when there isn’t I seem to give myself more things to do. That said I like to make my own lists.

I brake my goals down in to smaller goals, and give myself deadlines along the way to get the smaller goals done by.

Though I don’t always meet the smaller deadlines, working towards them will mean that I reach the bigger deadlines.

I brake everything down into to-do lists, then to-do lists for to-do lists. The tasks are as small as I need them to be, in order for me to get them done.

I’m honestly struggling with finding the motivation at the moment. That’s the biggest barrier I’m facing to the things I need to do right now.

But I’m trying, and that’s half the battle, so they say.