Tag: Feeling

Can you just.

On By Katy DalyIn My Disability TruthLeave a comment

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.

Physical feelings.

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For having a body that doesn’t work I feel a lot physically. My emotions seems linked to physical symptoms in a way that can honestly be very overwhelming sometimes.

It’s hard to live in a world where you feel so much, I guess.

And these feelings can and do cause a lot guilt. As I know ultimately I am making situations about me that are not ultimately about me.

And for that I’m sorry.

The way we experience emotions

On By Katy DalyIn Blog, My Disability Truth, Writing Prompts1 Comment

Which aspects do you think makes a person unique?

I think the most unique thing about humans is the way we experience emotions.

The fact that different things make us all angry, sad, scared, loved. While you may understand someone’s emotions it can be difficult to understand what triggers them, and impossible to understand how they feel them. And I honestly find that extremely fascinating.

I firmly believe that nobody’s experience is exactly the same where emotions are concerned. But if you can try to understand someone’s emotions in a situation you may be able to understand more about them and who they are as a person.

I feel like emotions, the emotions of others, are a big part of how I understand the world around me. I think this comes down to my disability, and the fact that I cannot understand the world completely physically. No matter how I hard I try, physically there will always be  things that I miss due to my disability.  But emotionally I am able to have a more complete understanding of the world around me. Man made ablesim doesn’t exist in the emotional world.

But just because I understand the world around me better through emotions, doesn’t mean that my emotions are easier to deal with.

At the minute I am dealing with anxiety over doing something that I know is important but scares me because it involves a phone call. I hate phone calls. No matter how important I know they aren’t I don’t want to make them. Annoyingly sometimes I get the confidence to make the necessary phone calls, but of course this never lines up to when I’m actually able to do that. And when I am able to do it, my anxiety acts up again.

What I can be sure of is my emotions don’t like me. But maybe that’s part of what makes me a unique person.

People.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

I can’t avoid them forever and I know that, when I’m with them I don’t even want to.

But when I’m on my own, thinking about meeting with people, leaving the house just seems like to much. It’s always worth it in the end, and locally I know that, but it doesn’t make it easy.

I don’t know if this anxiety comes from growing up disabled, or if it would just be a part of me anyway. It’s impossible to know having grown up disabled, which parts of me or my experiences would be different if I wasn’t disabled. But I suspect or maybe some part of me hopes, that it would be.

Growing up in the world, that is an accessible to you, can often feel like you’re growing up in the world that was made specifically to be inaccessible to you. Your existence in that world is nothing more than an annoyance to those around you. That’s a hard thing to deal with every day of your life for the rest of your life. It’s one of those feelings, that’s always there, even though it’s usually in the background and I can ignore it. but I do have a feeling that the residual existence of this feeling is what causes the anxiety that I’m left dealing with at the moment.

Either way I’m stuck what I have now. And let’s just say that’s a dislike of being around people, and sometimes even leaving the house.

I really wish I didn’t feel that way, that I could just go out without feeling like I didn’t want to. That I could want to go out.

But either way I will, and I know, I will have a good time when I do it. It’s just the feeling leading up to it, the anxiety, the fear of being judged, that I have to learn to deal with.

Sorry people. I’m trying.

I don’t know if I think about being non-disabled to much.

On By Katy DalyIn My Disability Truth1 Comment

Sometimes I spend a lot of time thinking about what my life might be like if I wasn’t disabled. The life I may have been able to live if things were different, if the world that I live in, became accessible to me.

It’s nice sometimes to let my imagination wander, but I do wonder if I do it to much. I do wonder if I spend to much time thiking about what could be, and if it causes me more harm than good. No amount of time thinking about things maybe being different is actually going to make the world accessible to me. No amount of staring at a steps is going to turn them into ramps. This is paraphrasing of a quote by Ali Tanaka, if you want to look into it more. No amount of focusing on not being disabled, is going to make me not be disabled. But the world is hard, and sometimes you end up there.

I know that logically I need to focus on my reality, focus on today, on where I am now. To make the best of a bad situation, as it were. And some days I can do that no problem, some days I know my life relative speaking is pretty good. Other times I’m really struggling with the idea of existing for the rest of my life as me.

I’ve tried to do something with my life, to make the best of it. But there’s only so many times you can fight against the inacessability of the world around you, before you wonder why you even try. But I deal with things the best I can, as we all do.

The funny thing, that isn’t really funny, is how I get judged by people who don’t know me for how I deal with life. A post like this would be called to negative, even though ofren it’s more real than the positivity I feel forced to disaplay to the world. Honesty itsn’t something people tend to want out of you when your disabled.

When I started this post I knew where I was going with it, but the more I have written, the less I have been sure. Sorry, I’m trying.

The inaccessible of the irrational.

On By Katy DalyIn BlogLeave a comment

It may be a hodge assumption on my part, but I truly believe we all do irrational things from time to time. Like checking the front door is locked, or in my case the same spot on the floor is clean.

Just because you’re disabled, and doing these irrational things might be more difficult for you, doesn’t mean it takes away the desire to do them. I wish it did.

I sometimes wish I didn’t want to do the difficult things in life and then maybe my life wouldn’t feel so difficult. But in reality it means that I would have to do not want to do almost everything. Even then it doesn’t mean that I wouldn’t experience these feelings again. And I know no one can live a life and not do anything.

I want to check that the same spot I watched my the person I live with clean on the floor is clean, but to do that I need her help. I need her to put the cleaner in reach, and of course she asked why I wanted this. So when I told her the truth she got upset with me, as if I’d accused her of not cleaning it properly. This isn’t what I was doing. It’s just annoying me, and I would feel better if I could check it.

If I wasn’t disabled, or to phrase it from happier me, if my home were more accessible. I would be able to do this without asking for her help, and so I wouldn’t annoy her. But it isn’t so I have annoyed her.

Sometimes I just want to do things for myself, but that is almost never possible when you’re me. That really gets to me sometimes. To be honest it makes me feel like my own existence is inaccessible to me. But this isn’t the first time I’ve experienced this, and I don’t think it will be the last.

This blog is honestly one of the only places I feel truly free, and as in control as possible.

I’m going to try and do the floor now, wish me luck.

After writing this post last night ready to post this morning I discussed it further with the person I lived with and they cleaned the floor for me, meaning that I didn’t need to do it myself. I have some thoughts about that that I wanted to share as well.

So I didn’t have to clean the floor myself, which saved me physically, but I feel like having someone else do something for me again has had an emotional impact on me. I know I could have done it myself if I was given the chance, but sometimes when you visibly struggle doing something, people don’t want to give you the chance, I think that’s what happened here. They meant well, but they didn’t even want to let me try to do it themselves, and I didn’t want to upset them by arguing that I could do it myself. So I just let them do it.

It makes me feel like I’ve failed at another physical goal I have set myself, I feel like I’ve failed at something that’s so simple that I should be able to do myself. I just wanted to try, to have it done my way, and I didn’t get that. I’m trying not to feel to guilty about that honestly, but it can be very hard. To be honest with you, I rarely get the chance to have things done the way that I want to. But that’s just what happens when you need a lot of help from others, you rarely if at all get any control over it.

It sounds ungrateful, I know. But just imagine if you had no say in all the little things around you. If you couldn’t decide exactly how your coffee was made, because when someone does a lot for you, you can’t ask them to remake coffee that is just wrong. That’s to ungrateful.

It’s not being able to do the little things that really get to me. And that’s why I’m trying not to overthink the floor, remind myself it’s done now, and in the grand scheme of things it doesn’t really matter now.

I’m glad I have the help I have, I just want the space and time and access, to do things by myself sometimes.

Opening my laptop

On By Katy DalyIn My Disability Truth, My WritingLeave a comment

The last post I wrote here was on my difficulties writing, and now that I’ve opened my laptop, I feel like in a way I could write more. That got me wondering if my biggest issues is opening my laptop? Like a more techy version of struggling to pick up your pen, I suppose. Once it’s in your hand, the hardest part is over.

So maybe once I open my laptop, or perhaps more specifically the file I’m working on, the hardest part is over. Who knows?

All this said, as I sit here writing this, despite my increased motivation to do so, I can feel the fatigue setting in my body. Despite only having been awake a couple of hours, I know that I could really do with a nap. But i don’t want to put that need to nap on the person I live with. We’re watching something together, and I don’t want to destry, I mean I don’t want my fatigue to destroy what we are doing. I know they will be okay with me sleeping, but it being something that feels so out of my control, doesn’t mean I don’t feel guilty. If I’m completely honest it makes me feel more guilty.

It’s an odd feeling, being both motivated to write, and fatigued at the same time. My brain feels wired, with words and ideas. It feels like breathing to get them out, to see them on a screen, to get some sort of release. Like I don’t even have to try to get it done. But my body feels tired, like I can’t keep up with the words I want to write. Like my body didn’t sleep last night, even though ny brain did,

This isn;t how I always experience fatigue, just how I’m experiencing it right now. The physical slowness, tiredness, is always there. However the mental tiredness comes and goes with the fatigue. Sometimes my brain feels just as tired as my body, and that is actually easier to deal with. At least everything I am feeling then is on the same page, right now it all feels to different to suceed at at.

I have so many ideas that I want to get out, but right now it feels harder to get the words out over the tiredness.

I just need a nap, sorry.

I’m not used to it.

On By Katy DalyIn My Disability TruthLeave a comment

There are things I’ve dealt with my entire life. The price of being disabled in an ableist world. The little things that are difficult about being me. I’m not used to them.

I’ve been told that I should be thankfully that I’ve never known different. As if that somehow means I don’t realise I’m disabled. As if never being able to look for the things that I want or look after myself. Should mean that I should never want to be able to do those things.

That’s not true.

There are days, or moments, where I would give anything not to be disabled. Where I just wish I could do the things I want to for myself. Where I could just find the things I’m looking for.

It never goes away, not completely. The desire to be free. I guess it’s human nature.

I don’t know that I’ll ever be used to being disabled. All I can tell you is right now that I’m not.

Fatigue sucks.

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Sometimes I think I’m so used to be tired that I don’t even notice that I’m tired anymore. I struggle to say I even have fatigue, it’s just me. Like the pain and discomfort, for me it’s my normal.

And then there are days like today where all I can feel is tired. Where the world feels a little bit slower and I’m fighting against the tiredness in me, as well as everything else.

Now I should say something clever or at least a little bit profound about living like this. But I honestly just don’t have the energy for that today.

I need to go back to sleep, but the joys of being me I don’t actually know if I’ll be able to sleep. I guess will have to wait and see.

There’s someone in the house.

On By Katy DalyIn My Disability TruthLeave a comment

Don’t worry, this someone is expected and they’re only stating the night. But I get a bit uneasy having strangers in the house, even when they’re expected.

I feel like they’re judging me. Testing me on how good I am at being disabled. That’s how I feel when I am out in public. But my home is supposed to be my safe space, it isn’t that when they’re strangers in it.

It’ll be okay, I know it’ll be okay but I don’t have to like it.

This is when I feel antisocial. It’s not that I don’t want to be around people it’s that I don’t want to be around people in my safe space. Logically, I know that it’s okay, that I feel this way, that it makes sense. But it might not make sense in the way that my behaviour plays out as a result.

I didn’t even leave my room when they came. I figured it was better that I stayed out of the way. And maybe deep down, that’s why I don’t like to be around people, because I just don’t want to be in there way.

Maybe this adds to me looking disabled. Disabled people don’t want to be around other people after all. It makes sense that I would fulfil another stereotype, whether I like it or not.

By the time this post is published they’ll have gone. They’ll go and things will go back to normal. And I can be as antisocial as I want in my own home.

I can go back to being as close to being alone as I can be, and try to convince myself I like it better that way. Maybe if I actually keep convincing myself that it will be true one day, and at least that part of my life won’t feel like such a contradiction.