Tag: Emotions

It’s a bit much.

On By Katy DalyIn BlogLeave a comment

A bad experience at a concert can really through me, and that’s what happened last night.

If you want to know more specifics about the experience you can see the TikTok I made here. A poor inaccessible experience, and that’s putting it lightly, throws the entire image I have of myself as a disabled person into question.

It makes me wonder why I even try, if I’m just going to be treated like that. It makes me wonder why I even try. It makes me feel more disabled. 

It shows me without a doubt that it’s society that makes me disabled, and that makes me sad. It makes me sad because I know there’s nothing I can really do about the way they want to treat me.

I just want to enjoy a concert. I don’t understand why that’s to much to ask.

Access

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When the wheelchair accessibility of a venue is so rubbish but they won’t let me leave without making my carer leave to who likes who we were supposed to see as well so you end up sitting in the corner watching How I Met Your Mother. This is why I go everywhere prepared to sit alone in the corner 😂😢

Image Description: picture of a clip from How I Met Your Mother on a phone, showing Lily and Marshall the captions read “there occurred a game-changing emergency.”

Make of this what you will. May or may not explain more later.

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.

I can do some things on my own.

On By Katy DalyIn Blog, My Disability Truth2 Comments

So after being out all day yesterday, the person I live with seemed surprise that I told them I would be okay to handle what we’d being doing today on my own if they wanted to stay home and sleep.

To make it clear I won’t really be on my own for a lot of the day, but because they won’t be with me for all of it, for part of the day I would be on my own. Specifically while we get to the place where we’d be meeting family.

This is a well practiced route that I do almost every Monday, when we go for a family breakfast, so I’d be fine. In some ways it’s actually easier for me to be out of the house on my own than in the house on my own. My house is just that inaccessible in parts to me. But still they seemed surprised that I’d be okay to handle this on my own.

I think it’s easy to forget when you see how much help I need on a regular basis that I don’t need help for everything. That although some things are easier for me to get help with, it doesn’t mean I couldn’t manage them alone.

Interestingly as I write this I had to call for help, but remember what I said about my house not being that accessible to me? Blame the environment for that one.

Anyway, the way they said this was like they expected me not to go if they weren’t going, and honestly that annoyed me maybe more than it should. Like I said this is something we do every week, and a few times I’ve been too tired to go, but I’ve never expected them not to go because I wouldn’t be. It’s like they forget I am an adult that can do things without them. Maybe they do? Maybe everyone does? Maybe I do? I don’t know.

There’s something else I want to add about this weekly get-together. It started years ago, and initially, it wasn’t something I was invited to, which really upset me, and on some level, I think it still does. When I questioned why I wasn’t invited, I was told they just didn’t think I wanted to go. And I don’t know if they genuinely believe that, or if it’s just what they tell themselves to make themselves not feel guilty, or which answer to that is worse.

I personally think they decided that it would be too difficult for me to get there, and so decided just not to invite me. I never questioned it because for a while I didn’t actually know it was happening. But this wouldn’t be the first time my family have done something like that. Made the decision for me about going somewhere or doing something, and so never asked me about it. They once went to a theme park when they knew I wouldn’t be home.

This isn’t something I can bring up with them, as it will definitely start more drama than it is worth. I doubt they even remember what they did. But I do. I remember the exclusion, feeling like I was too much to be included even by my own family. That’s something that I still struggle with now. I often say I don’t want to do things, if I think having me involved will make things more difficult for others. It’s not only my family that have excluded me in this way throughout my life, but it definitely hurts worse when it comes from them.

But back to today, I will be going to the family breakfast, whether or not I have to get there or back to my dad’s on my own. It will be happening. I deserve to be involved in things, I deserve to be involved in this family. And this is how I want to be involved. Plus, I really like being able to have chips for breakfast.

Just remember that if you’re reading this, know that you deserve the same from your own family whether or not they make you feel that way. You deserve to be part of the gathering, part of the memory, part of it all. And if they exclude you, it is always a choice, there could’ve always been a way to include you. That is a decision they made, it is on them not you

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’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.

When you’re not the one fixing the problem you don’t get to decide how the problem is fixed.

On By Katy DalyIn My Disability TruthLeave a comment

So my little girl was at the vet today. That went about as well as can be expected.

But the person I live with left the medication she was given in the car of the person who took them to and from the vet. As I’m in bed I can’t go and collect it, and they do not want to do so until the morning.

This massively frustrates me as I want to check the medication now, but as I know it doesn’t logically matter I haven’t said anything to them. I know they would go if I asked them to, but I don’t want to be the one to do that. It doesn’t seem fair to make them do something that isn’t that important just because I can’t do it myself.

But if it were up to me I would go and get the medication now. And I think what’s really bothering me is less the problem but more that I cannot fix it the way that I want to.

I can’t help thinking that if I wasn’t disabled I would be able to solve the problem myself. Even more I would have been able to take her to the vet myself, and I wouldn’t have lost the medication so there wouldn’t be a problem to solve. I think this is tired to how useful I feel as a parent to my pets, if I wasn’t disabled I could just be more use to them, show them my love better.

I know logically this isn’t true. And that this isn’t a really big problem, but it’s the little problems that seem to upset me the most.

I just have to keep reminding myself that tomorrow it won’t be a problem anymore.

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’m going to lie.

On By Katy DalyIn BlogLeave a comment

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.

Are you awake?

On By Katy DalyIn My Disability TruthLeave a comment

This is the message that I often send to the person I live with in the middle of the night to see if they’re awake.

I’m in a position where if it was an emergency, I would be able to ring them if I needed them. But there are some things that just isn’t fair for me to wake them up in the middle of the night. I’ve made a list of exceptions to only messaging them once it gets past 12 o’clock at night.

This list is short. It only includes whether I am falling out of bed in anyway or if I have dropped my bed control. I would hope that it is obvious why I would need to call for help if I was falling out of bed. While I have never fallen out of bed, well not since I was a young child and used to throw myself out to bed in order to get my parents attention. I have had my leg fall out of bed and been unable to get it back into the bed myself, this is when I call for help. The reason dropping my bed control is on the list of acceptable reasons to call for help after midnight is because I’m unable to sleep if I cannot move the position my bed is in. It causes me a lot of pain to not be able to change my position when in bed, particularly if I am stuck lying flat. It isn’t as bad if I am sat up pain wise, it’s just incredibly difficult if not impossible for me to sleep.

I’m writing this post now because I’ve just had to message them in order to see if they were awake, thankfully they were. This means that I can get the help I needed, which while it wasn’t vital it is going to help me to be more comfortable for the night. The time it was the position of my electric blanket that was bothering me, not something worth waking them for, but still a relief to have fixed.

For reasons I do not understand I need to have the same fabric on each foot or it’ll really irritate me. Preferably it’s my electric blanket as the heat also helps me with pain, but as long as it’s the same I’m comfortable ish.

Now I have my electric blanket over each foot and leg, but I’m trying to debate whether the pain is bad enough that I need to put it on. Really I should have asked her to pass me my fan as well, so I can have it on without overheating, but I forgot.

That can be one of the most frustrating things about needing so much help, is I can only have help on there say so. And to keep things comfortable between us I have to try to remember everything I need help with all at once.

But before you think the person I live with is horrible, they never actually said this to me. It’s just what I have picked up after a lifetime of needing help from others. I have to need help as little as possible and make it as easy for them to help me as it is possible. It’s probably me really, somewhere in my brain that says that. I can’t ever actually remember being told this, it’s just what I’ve always believed. I’m trying to not think too hard on why that might be.

My sleep is shocking at the moment, I feel like I’m going from no sleep to too much sleep with nothing in between. And no matter which I get, my fatigue is till the same. I’m still at the very least tired, most of the time exhausted. I often joke that I was born tired. I don’t remember ever going more than a few hours without being tired in the day.

But when my sleep schedule is better I’m able to push myself to do things and have a bit of a life. I’ve got upcoming plans that my current sleep schedule is going to make very difficult and I’m honestly concerned. But that’s just life for me.

I end up putting off plans where I can do I can sleep in the day, even though I know that doesn’t help me. I don’t want to let people down by doing things when I’m just too exhausted to pay attention, I would rather cancel.

The idea of going out of the house is rarely appealing to me. But when the fatigue steps up to the level it currently is and my sleep pattern is rubbish, it’s even harder for me to want to do anything. Having the dogs and things I can’t cancel without a lot of guilt help. But I also just have to wait until this passes, until things right themselves.

But right now I’m sat it’s 3am and I’m only now just getting tired. I have the chance of plans tomorrow but I’m honestly debating whether to cancel or not so I can just sleep some more. I know it’s not nice and I should just go out. But I just don’t want to, at least I think I don’t want to. I guess I’ll decide tomorrow what I’ll do.

I hope you’re not awake at 3am if you’re reading this.