Tag: Trying

Cyril controls more than I wish it did, but I’m trying.

On By Katy DalyIn My Disability Truth, Writing Prompts7 Comments

If humans had taglines, what would yours be?

If I tell you that Cyril is the name I use to describe my cerebral palsy, this tagline should make sense.

Naming my cerebral palsy helped me to separate it from myself, and find who I am outside of my disability. But I still often feel trapped by my disability, though I’m trying to make the best of my life.

It’s hard living your life knowing that you will never get to live the life you feel like you should have had, and knowing there’s nothing I can do to get that life.

If I’m being completely honest with myself, I feel like my disability robbed me of a better life. And logically that’s just sad.

Sometimes all you can do in life is the best you can do, and that has to be enough, I guess.

Starting regular medication.

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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.

A work complication

On By Katy DalyIn Blog, My Disability Truth2 Comments

I have been looking at getting some work, mainly because in all honesty I just want something to do with my time and a little extra income would be nice. But I do not have the ability, the energy, or the opportunity to work a full time job.

So I have to be sure that any work I find must not cost me the benefits I receive, as I need them to ensure all bills are paid. But they don’t make that easy.

Working within the benefits system is just so complicated, that yet again I feel like it isn’t worth what it will cost me, for what I’ll get out. It’s just too much.

It doesn’t make sense really, a system that claims it wants to get people into work, to be so difficult to navigate.

I wish I could just go and work in a shop, that that would be something I would be able to do. That I could just have something to do that would bring me enough income to be self-sufficient. But my disability, society, has to make things so much more complicated for me

I honestly don’t know why I keep trying, and yet I do.

But people who do not know better call me lazy, say I have not tried, when all I have done is try. I’m tired of trying.

I’m tired of not being able to work.

I’m tired of the system being so complicated.

I’m tired of it all being down to me to try, when it is clear others want me to fail, so I will.

I’m just tired.

I’m working on it.

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What fears have you overcome and how?

I have so many fears, that to be honest I can’t place just one that I have overcome.

I feel like working on them all is a lifelong task.

I’ve gotten better at speaking on the phone. At telling people how I feel. At saying no.

But to say I’ve overcome these fears would be to suggest they no longer scare me, wouldn’t it? And to be honest they do. I think they always will.

Maybe overcoming a fear is to learn to live with that fear and to not let it stop you, rather than never being afraid of something.

But I think it’s a process. Not a to do list.

Nothing really.

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What jobs have you had?

That’s not strictly true, as I did have a few jobs in university, in situations where they are specifically looking at employing students of the university. There are only things that lasted a day though. I did earn my first and to this day only paycheck which was nice.

But I’ve never really had a job despite trying. Many jobs are inaccessible to me, and people don’t really expect me to work. I tried for awhile to fight against this determine that I would fine something to do. But when your options are already limited, and people are just turning you away because you have no experience as no one will let you try. There’s only so many times you can be told no before you end up listening.

Just remembered that not everybody who doesn’t work doesn’t work because they’ve chosen not to. Whether a person is disabled or not they might want to work they may have tried to work but it is not always that simple.

I can’t just walk into a shop and get a 9-5 to pay the bills. I’ve actually dreamed through having a job like this. A job where I am able to earn my own money and have a role in society is all I really want. But I don’t think it’s in the cars and that makes me sad. 

I’m going to lie.

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I’m not going to say that it bothers me when you do things I can’t do, but it does bother me.

Something are just accessible to me. even when they’re supposed to have accessible options, they just don’t, that is just a part of my life. And when that comes up like it did today, of course I’m going to say that it’s okay with me if you still do whatever it is. It really isn’t. But I’m not gonna be the reason that you don’t experience something. I’m going to minimise as much as I can how much my disability impacts what you are able to do. I’m the disabled one, not you.

But it’s going to upset me that I can’t be part of the experience. I’ve learnt though to keep those feelings quiet, to not make everything about the fact that I can’t be a part of it. I’m not sure it’s ever going to get to the point where it doesn’t bother me though. But I’m sure I’ll get better at hiding it.

The biggest problem here, other than the lack of accessibility, which should always be seen as the primary problem. Is the way I deal with this, emotionally. Logically, I know that something not being accessible to me is not my fault, but emotions make difficult. w

I would be lying if I said that it didn’t cross my mind that if I weren’t disabled, I would be able to have the experience. That I am the problem, not the world around me. And even though I have spent my entire life disabled, I know and understand internalised ableism very well. That me being the problem feels too much like the truth, that every time I fall for it, even just a little bit. And I have to convince my brain it’s wrong.

When I look at this without emotion it is obvious that my brain is wrong. It is obvious that I cannot and should not be blamed for the inaccessibility in the world me. I didn’t choose to be disabled and I didn’t create the world the way that it exists. I just live in it the same as you, the same as anyone else. This guilt, shouldn’t really be mine to take. And yet every time I start by making myself take it, and going backwards from there.

I’m hoping that eventually I will learn not to blame myself so much for things that are not my fault. That I will learn not to blame myself for feelings that I cannot control. That I will be able to validate my own feelings the way I validate others, because I deserve that same treatment and care. But I honestly don’t know that I’ll ever get there.

I can’t be left alone.

On By Katy DalyIn My Disability Truth4 Comments

Sometimes I forget that, because when disability is your normal you don’t feel disabled.

But when the person I live with came to me tonight and asked if it would be okay if they stayed somewhere overnight in a couple of months, I wanted to say sure, because I don’t want to stop them doing anything. But my first reaction was what do I do while you’re not here?

Now I’m lucky to have someone else that can come stay with me for the night, so that they can go and do what they want to do and I still won’t be alone. But it dawned on me then that means I can’t be alone. And as I write this, I really don’t know how to feel about that.

It’s like a reminder that I’m still disabled. And people who know me who aren’t disabled might find that odd because I am very obviously disabled and it doesn’t make sense that I would just forget. But I really don’t feel that way most of the time.

In many ways, disability can be a mindset. But this isn’t the positive mantra you think it is. It can lead to a disconnect between the body and the mind, that I’ve had trouble dealing with all my life. And can make the reality of realising I’m disabled, difficult to deal with at times.

Today was odd.

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In some ways it was fun. I got to watch the new Doctor Who which was so great.

But I also feel a little guilty for today. I was supposed to go and see someone who said I didn’t have to go because it was really hot here. Even though they are the one who said it was okay I still feel guilty for not going. I just really didn’t want to go out today, and it wasn’t completely about the heat though that was part of it.

Sometimes I find it very difficult to leave the house, emotionally. I just really do not want to, and get tired of forcing myself to.

I feel like the house won today, and the relief I felt about not having to go out, also came with guilt. I feel like I should have wanted to go and see them, but I just didn’t.

Anyway, if you saw them, I hope you enjoyed the Nothern Lights, I was asleep. 😂

Daily posting.

On By Katy DalyIn Blog2 Comments

If you pay enough attention to this blog, you may notice that I posted multiple times yesterday and then deleted the posts.

This is because my streak on this blog feels like it’s very important to me. And for a reason I’m not sure about, my posts missed a day 3 days ago, so I lost the steak.

This post is a test post to see if I’ve fixed the problem.

I know it might seem silly that I post daily on this blog, or that the steak matters to me. But on days when I’m struggling with my self-worth the fact I’ve posted on this blog, the fact this blog is still going, means a lot to me.

I have tried to post many blogs before, and usually given up. But every post in this blog is a reminder that I haven’t given up yet.

Can you just.

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You know all those little things that pop into your head to check when you’re trying to sleep in the middle of the night?

Well I can’t check them.

I can’t check where that charger I don’t really need is, or if the front door is locked. Or if one of the babies are doing something they shouldn’t be in the night.

But despite not being able to act on them, I definitely still get the thoughts. I still want to check the heating is turned off or if the front door is locked.

And again, I can’t check them.

When it’s at it’s worse every thought feels like nothing more than a reminder of the things I cannot do.

I just wished the thoughts matched my body. That my brain and the rest of me were on the same page, just once. It would really do me a favour if I no longer had the things that my brain stated to me at the moment which I’m not able to do them.