Tag: Trying

Fatigue sucks.

On By Katy DalyIn My Disability TruthLeave a comment

Fatigue is a big problem for me at the minute. And I did the thing you shouldn’t do and googled, it’s going to get worse.

It’s really hard to get the motivation to do thins when I just think hey I’d rather be asleep than do that. And if I do massage to catch it where my brain is on board, it always seems like my body is on a different page.

There are many reasons why it can seem that is my body that makes the world inaccessible to me, and this is just one of them. I have to push myself against my own body.

I’ve tried to regulate my sleeping pattern and even if I can do so for a while, it never seems to stick. Something always happens, I sleep to much or not enough for one day and it completely throws me off.

I’m going to really struggle this week. I have a big day this week where I’ll be travelling all day, and I can already tell I’m going to be exhausted for it. Afterwards though it should help my brain and my body to reset.

So I guess this one’s just to say bare with those of us who seem like we never sleep or sleep to much. We’re trying. It annoys me to.

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.

When you can’t find the things that work.

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Sometimes when you’re disabled, living your life independently in an inaccessible world can be very dependent on specific pieces of technology.

Technology doesn’t know how valuable it is, and technology being technology it will eventually break. You will need a replacement eventually, that’s just life.

But just because you need a piece of technology doesn’t mean that you’ll be able to find the replacement you need for it. And what do you do when you can’t find the replacement that you need? Like anything, you adapt.

Adapting is something you have to do a lot in an inaccessible world, but that doesn’t make it easy. It can be very upsetting and difficult to do, especially when adapting involves changing a way you’ve had that works.

I don’t like to do it. But does anyone like change?

Needs must, I suppose. And so I’m trying to continue and adapt and change. To face the challenges life throws at me. But in all honesty it doesn’t get easier.

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.

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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.

Concerts and shows.

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I’m looking to go to another show. I recognise the privileged position I am in, that I can consider going to shows. That I have the money, time and the physical health and ability to do so. But every single time I do this I’m reminded of how disabled I am.

The extra steps I have to take, to get one of the limited number of wheelchair spaces at at a venue, this venue has four. And not knowing which of these steps this specific venue wants me to take. 

I can’t just buy the ticket on generally sale. I have to first know if the venue is accessible, and then if I need to buy another ticket or if the person who’s support I need at concerts is able to get a companion ticket. I then need to know whether the ticket needs to be bought from the venue website or from the standard ticket sale site.

I don’t want less steps, I want the same amount of steps. This is accessibility.

Now there are many reasons that concerts are inaccessibility to me. So once I’ve bought a ticket, doesn’t mean I’ll have a great time when I go. It feels like my disability is every, like it touches everything, and it does. Even even concerts. Even music.

My freedom is yet again tainted by my disability. More, by the inaccessibility of the world around me.

But I keep trying, I’m going to do my best to keep trying, to go to the show. To be an active part of the world around me. And not just feel stuck and forced to live in it. Concerts and shows help me with this, if they go well. If the experience goes well that is, if it goes badly the opposite happens. But I can but try.

Fatigue sucks.

On By Katy DalyIn My Disability TruthLeave a comment

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.