Category: My Disability Truth

I haven’t worn shoes in 10 years, but that changes tomorrow.

On By Katy DalyIn My Disability TruthLeave a comment

Okay so there were a few times I’ve worn shoes over the last 10 years. But I did stop wearing shoes with any kind of regularity after an operation I had after high school, so that was 11 years ago. There was the odd occasion where I was made to wear shoes in order to appear “professional”.

But I haven’t willingly or consistently worn shoes, for longer than I’ve had Bella, who is 11 thus years. And that’s all about to change if these shoes are able to keep my feet on my footplates tomorrow.

My footplates were recently quite dramatically highered, becauae apparently they were in a very wrong position for me for a few years. However no one decided to tell me or my body that. To avoid going straight to straps I’m starting with just adding some grip in the form of shoes, or shoe like slippers, and seeing if that solves the problem.

Technically I’m starting with slippers because you’ve got to start somewhere, right? And they won’t change the position of my feet, this is particularly scary for me on my right foot an ankle which was wrongly placed in the cast after that surgery and so is now no longer straight.

This feels like a dramatic change to my life, and the way I relate to my disability. But hopefully it works and ends up being good. And at least I won’t go through shoes, or slippers, that quickly, as they won’t touch the floor.

Wish me luck.

Sometimes you’ve got to try different, right?

Check out my brief Tiktok about it here – if you like.

“Last thing”

On By Katy DalyIn My Disability Truth1 Comment

It might come as a surprise that I still need help whether or not you are tired. I don’t like it, I wish there was something I would be able to do so that I didn’t need your help for things, but there isn’t.

Sometimes I need your help when you are tired, and sometimes I need your help for multiple things, and I might also need your help for multiple things when you are tired.

I don’t get to choose when I need help, and you did already agreed to help me. You had other options for life that did not involve me so why do you have to pretend like this is something that just happened to you and not something you chose?

We all have off days, but when you care for someone you also live with the days can be very personal. You agree to help them whatever your mood.

I’m sorry this was going somewhere, but the fatigue is kicking my ass as i try and write so this is all I’ve got.

Why can’t the Paralympics and the Olympics be part of the same show?

On By Katy DalyIn My Disability Truth1 Comment

I’m going to need someone to explain it to me like I’m five or something because I’m really not understanding it.

It makes perfect sense for there to be separate events, but a separate show allows society to treat the Paralympics as if it’s not quite the Olympics. And over and over again it does this, the Paralympics Tiktok channel is one example of this. Many people think the Olympics is now over when the Paralympics hasn’t even begun. I can’t blame them, there’s been a very clear end to it all. I really don’t understand why they just can’t be combined to have one opening and closing Ceremony?

Am I missing something?

I’m not saying it would be easy, but I think that so many people have convinced themselves it wouldn’t be possible or it isn’t necessary, that they’re not even willing to consider the idea that it could work.

It would change the Paralympics from being a token idea of equality to actual equity.

One day when I am left home alone, I won’t drop anything, I hope.

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Yes, you’ve guessed it. I am home alone alone and have managed to drop something yet again.

It’s not that important and while the consequences are, I will be uncomfortable. I am still safe so that’s all that really matters. They will be back in a few hours anyway it’s nothing to really worry about. It’s more annoying than anything. I just wish I wasn’t so disabled sometimes.

It’s funny how quickly your feelings can change based on what happens around you. For me, my entire self-worth can be called into question because I drop something on the floor.

If it’s on the floor, it might as well be lost if I’ve lost it it’s probably on the floor. Is a variation of something I’ve said a lot. It just happens it, it is life. But when you can’t fix it yourself, it is frustrating.

Doing what you can.

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I think when you need a lot of help from those around you, being able to help them can be something even more important to you than most. I don’t really want to say it feels like like paying them back, because that suggests that you should have to pay those that helped you back for that help, and of course you shouldn’t. But if I’m honest with myself, it does feel like that.

So when I’m able to help someone, I push myself to do that more than I should, and perhaps more than most would. Sometimes doing this can be to my own detriment, as was the case yesterday.

We ended up having to get a taxi part of the journey home from the concert on Tuesday. While this was in part due to public transport ending before the concert had finished. It was over a distance that I would normally be able to travel in my chair. But because of things I had done earlier that day and having thought far enough into the future, I ended up with very little battery in my wheelchair and would not have been able to make the journey.

Earlier in the day I had ran errands for a family member whose car had broken and needed things picking up. This person is not able to travel without their car as they are unable to walk long distance.

It’s a learning experience when you’ve always been disabled watching those around you become disabled. Watching how they react to it all, how they adjust to their new normal. And sometimes unfortunately how they give themselves to grace they never gave you.

But not to dwell on that. Here was something I could do for someone who has done a lot of things for me regularly in my life. I just didn’t think through the consequences of helping them.

That is honestly a really frustrating part of being disabled, when others need your help, you still have to consider what you are able to do within the capabilities of your condition and situations. Sometimes this means you are not able to do everything you want to be able to do for them. It’s one thing to let yourself down, it feels so much harder to let other people down.

So I was going to do what I could despite what it cost me. And in all honesty I didn’t even realise until it was too late. But it’s not the end of the world, I got home okay and had a great night. And I managed to help someone, so that felt good too.

I just wish that wheelchairs could be charged using USB from a powerbank. That would honestly be the most helpful solution so my wheelchair is never able to limit my independence due to its charge Maybe one day it will be possible. 

Shower night.

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Showers are supposed to be relaxing apparently, though they don’t feel that way to me.

Tonight I had to shower and unfortunately I ended up getting injured. That’s not really what most people think of when they have a shower. But it happens and worst of all I didn’t come out of there completely clean. I’m difficult to clean and the situation in which I have to shower makes it difficult. So to be honest I don’t like to do it often. You can see why when you understand that it’s usually a painful process. And that’s not counting nights like tonight where I ended up getting injured.

At most I’m able to shower three times a week, this is what my care package allows. But if I’m being honest even that’s too much for me. I generally only shower once a week, sometimes once every two weeks. Now don’t worry I don’t smell, unless my incontinence has been having fun, because the carers wash me daily. Whether they wash me properly is another problem. But generally it’s not so bad only showering once a week. It keeps me clean enough I think.

All this is to say that doing what’s social expected can be draining physically and emotionally, even when you have complete help to do it. So whatever you can manage is enough.

Ignore anyone else that tells you otherwise, they’re not living your life with your situation and you’re doing your best.

And yes I’m reminding myself of this as well.

Lets talk about teeth.

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This isn’t something I like to talk about, but I guess here is the place that I do that.

Brushing my teeth is always something I’ve struggled with, it’d physically difficult for me to do, but I realised recently that it’s more than that.

Partly to blame I think is the fact that regularly brushing my teeth wasn’t something instilled in me in my childhood. It now feels like something extra in my day to be done, rather than something to be done as part of my day.

But I think the biggest issue if I’m honest is the fact I need help with it. At the very least I need someone to get me the toothbrush, toothpaste and some water. Needing help is strange to me, it’s not as if it’s new, but certain things are difficult for me to ask for help with. Even though I know logically that it shouldn’t be, that I should be used to asking for things that I have to do it so much. But sometimes they just look tired or busy and I don’t want to ask, even though I know I can and I should.

If I could do it myself I think it would be easier to convince myself to do it. But I can’t at that makes it harder, in the physical and emotional sense.

I guess you can’t choose what’s emotionally difficult about life.

My phone

On By Katy DalyIn Blog, My Disability Truth, Writing Prompts2 Comments

What is the most important thing to carry with you all the time?

I know how that sounds but bare with me.

My phone, the internet, and social media, it is how I access the world. There’s no other way I can do so without help, there’s no other place I can be me the way I want to.

My phone also gets me help when I need it.

It’s not unfair to say that it’s my lifeline.

So don’t judge people who live through the Internet, judge the rest of the world for making it there only option.

You will be in the way.

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The reality of being disabled, and living in an inaccessible world, is there are something situations where you’ll just be in the way.

One of these is other people’s medical situations. When you want to help, you can’t. And because you still need help regardless of what is going on in other people’s life, it’s easy to feel like even more of a burden.

This post was supposed to be longer, was supposed to be about me saying that if you’ve felt this way it’s not true. But given I feel like this at the minute it’s hard for me to give confidence I don’t have to others.

Just know that despite how you feel it’s not your fault. And I know that doesn’t change the situation, but I hope that it makes you feel that little bit better.