Tag: Real Life

Welcome to the club

On By Katy DalyIn My Disability Truth1 Comment

I wouldn’t say I wish chronic illness or disability on anyone, but as I age and everyone I know slowly joins the disability club, it’s an interesting experience.

Watching their entire life change as they learn to cope with things I’ve been coping with my whole life. Watching others care because it’s new to them, and knowing it won’t last when they loose interest.

I don’t mean to judge anyone with this post, it’s just what I’m observing. It’s like everyone around me is starting to join the club, just like I told them they would. And sometimes I just want to go “ha I told you so”.

If you’re reading this and you’re not disabled just reminder that Disability is a matter of when not if, one day it will be you.

Discomfort

On By Katy DalyIn My Disability TruthLeave a comment

For reasons that I hope are clear if you’ve been following me for a while now, I’m a member of many different disability and chronic illnesses groups on social media. A common topic in both is chronic pain, but something I don’t see discussed is chronic discomfort.

In my experience this goes alongside chronic pain but is something that is distinctly different at least in my experience. But no one seems to talk about the difference, so it has me wondering if I’m making it up or just not phrasing it right?

It’s like sitting in my body doesn’t quite feel right. Like I always need to be moved a little bit, and I can never find that one spot I’m looking for. In itself that’s doesn’t hurt, I mean it does hurt, I do hurt but that feeling is different to me.

I don’t know maybe I’m talking rubbish. Maybe it’s the same thing. Maybe it’s because I’ve spent so much time in my chair recently. Who knows? Not me.

Can we not give advice to people that didn’t ask for any?

On By Katy DalyIn Blog, My Disability TruthLeave a comment

I don’t understand why people do it. That’s a lie I do understand it. I just don’t like it.

Today someone gave me “advice” that I didn’t ask for, and it’s less what they said and more the implications that came with what they said.

I was travelling with someone else who need some assistance to walk independently. This could not be achieved safely on the pavements, due to the uneven nature of the pavements, and so it was safer for us to be in the road.

But someone decided to pull up and inform me that doing this was dangerous. The way you would tell a child not to walk in the road, or play in the street as they say.

Firstly I am an adult. I am cable of keeping myself, and the person I was with, safe. You wouldn’t assume a non- disabled person wasn’t able to do this, so why are you assuming this of a disabled person?

Secondly, if you see a disabled person doing something you don’t understand, don’t immediately assume they’re doing it wrong. A lot of disabled people learn how to do things safely, but differently to how you might consider something should be done. You’d be better of assuming that they just know what they’re doing unless you are sure they aren’t.

I promise you, no disabled person, and especially no wheelchair user, is going in the road for fun. Pavements are a lot less accessible than you might realise.

I promise I know how to exist in an inaccessible world as a disabled person. I’ve been doing it long enough.

Your advice isn’t needed or wanted, and is frankly very insulting.

Can I live alone?

On By Katy DalyIn My Disability TruthLeave a comment

Honesty I don’t know. And that might be a question I have to answer sooner rather than later, given the current situation I find myself in.

There’s lots of factors to be considered here, but with this post I will be focusing on whether I could do so emotionally rather than practically.

I don’t know if I’m more worried to try just because it’s scary to do new things or because I’m scared I won’t be able to do it.

It’s hard sometimes being so physical disabled, being so reliant on others, and being so acutely aware of just how reliant you are. I think the push to possibly living on my own is a reminder of this. And the fact that it’s not exactly on my terms makes it all that little bit more emotionally challenging.

Reliance on technology

On By Katy DalyIn My Disability TruthLeave a comment

I am reliant on a lot of technology to live my life. One of the most important pieces of technology and reliant on is my wheelchair, but this can break like any other piece of technology can. At the minute I am dealing with a few different wheelchair related problems including footplates that are the wrong height, alongside cushions that are no longer functional and batteries that do not work properly.

When I went to have a the cushion looked at recently I was told that not only do I need a new cushion but my foot plates were the wrong height. If I’m honest, I was confused by that because I’ve had a foot plates at this height for many years. But although I use these chairs, I don’t know a lot about sitting in them correctly so I believe the professional who saw me at my appointment and allow them to fix what they saw as the issue. They were hired but now my feet no longer stay on the foot plates.

While waiting for the cushions to be replaced, I found it was causing too much of a problem for me that my feet would not stay on the foot plate anymore, so I contacted them for a solution. But as if that wasn’t enough of a problem while waiting for solution to these two issues, I developed a problem with my batteries.

Again in trying to be helpful, I did something I’ve done many times before, I picked up some prescriptions for others and took it to them. By the time I got to the house, which isn’t all that far from mine, I had very little battery left in my wheelchair. I had to get someone to walk me home to make sure I got there okay without my chair stopping like it often does when the batteries are really dead. The only way to tell when the batteries is on my wheelchair are going is when they no longer last the distance that they previously did. There’s no indicator on the chair, or any way to really predict the batteries going before they start to go.

This means I had to call the wheelchair services that provide maintenance to my chair and book an appointment for them to replace my batteries as soon as possible. This was something they were able to do quicker than the other repairs I am waiting on, both because batteries are obviously more important but also because they are standard and more easily replaceable than other parts of the chair. But it means I have to put my life on hold to some extent until the batteries are replaced. I have plans tomorrow for example, but I may not be able to follow through on them depending how well my battery wants to work between now and when it will be changed on Monday.

While some people might understand a little bit about what it is like to be reliant on technology in modern society, as tech technology needed a lot. You can’t really understand what it is like to need technology like those with disabilities often do unless you’re in that situation. Technology doesn’t just make things easier, when you’re disabled, it makes things possible.

It can make life difficult, as I promise you it will usually brake at the most inappropriate time for it to brake. But in reality, there’s no good time for something that you need so much to brake. You just have to learn to get by as best you can, and wait for it to be repaired. But I really wish I didn’t have to rely on technology sometimes, especially when it doesn’t work properly.

Hopefully I’ll get my batteries changed on Monday, and the other problems fixed as soon as possible. Then nothing will go wrong with my chair, and I can get on with my life without having to stop it for broken vital technology, for a good while. 

You will be in the way.

On By Katy DalyIn My Disability TruthLeave a comment

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.

Lost and not found.

On By Katy DalyIn My Disability TruthLeave a comment

I know I’ve written about this one before but it’s really bugging me again. And in true deflecting me style it’s not even the biggest problem I have to deal with now but we’re going with it anyway.

I think I’ve lost a bottle of pee.

Now in my house that’s not as stranger sentence as it might seem. Given I use a catheter to empty my bladder into a plastic bottle. I have been known to loose said bottle of pee in different areas, both in and outside the house. Now this post is less about the hottie of pee and more about the fact that I’m unable to look for it myself.

Now because I can’t look for this myself I always feel like it hasn’t been looked for properly. Years of mistrust slowly creeping there. And there’s very little I’m able to do about the entire situation, that in itself is the most frustrating part. If I could look myself, I didn’t find it, I know I would’ve tried my hardest. I can’t know that for certain of other people.

Being disabled as essentially having trust people throughout your life, at least for me. You don’t get a choice about needing their help, and you need it whether you trust them or not.

Working for free on benefits

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Image if your worked stopped paying you as soon as you earned what someone else decided was enough for you to live on.

You then had to live off your savings until someone else decided that you didn’t have enough money to live on so you should be paid again.

All the while you were still working.

This is the reality for many disabled people.

While if you’re lucky you’re on one of the few disability benefits that aren’t means tested, most are.

Benefits are the only source of income some disabled people have. Even if they are able to work, despite there conditions and the ableism they face in society. They still need the benefits to pay for the disability tax. The increased cost of living in society as a disabled person.

And yet if you what someone else seems is too much money, most if not all of your income is taken from you.

I could do with doing this more let’s be honest.

On By Katy DalyIn Writing PromptsLeave a comment

What strategies do you use to maintain your health and well-being?

I’m struggling to focus on this at the moment, it’s almost 5am as I write this so that should be obvious.

While I guess I struggle with this a lot of the time, it’s hard to pinpoint what I do at these time, and if the things I think I do are even for the best.

I think I give myself the time and space to sleep and rest. But maybe that does me more harm than good, maybe it’s just me trying to escape everything and why I’m up at 5am.

Music can be helpful, but can also hurt, as it can trigger memorises of things I’m trying to get away from.

Watching my favourite shows or my comfort shows can be a nice escape, but if I finish a show it can be upsetting for me emotionally. I haven’t really considered properly why this might be.

Writing can help but often I fall into the trap of putting to much pressure on myself to complete a goal, so this stops becoming helpful.

Anything else that I may like to do to help my own wellbeing, I generally need help with. And besides not wanting to be more to burden to those around me, this can also be a trigger for me. A reminder of the things I’m trying to escape from.

I don’t know if this makes sense at all. And I’m even less sure, I might just of wrote it as an escape from going to sleep, which I should really do as I have plans in a few hours. Plans that I now don’t really want to do. I’m so tired but can’t sleep.

But maybe I should take the fact that I felt drawn to writing this prompt, as a sign that I’m getting myself back into writing a little bit. And maybe now I’m putting too much pressure on myself to start writhing again. I don’t know anymore.

I can’t really travel.

On By Katy DalyIn Blog, My Disability Truth6 Comments

What are your future travel plans?

Yes for the reasons you’re thinking of, but also not really for those reasons.

Let’s just say that money can solve most problems and if you really don’t believe that then you’re not paying attention to how privileged financially you are. Money could definitely solve the problem with travel for me. While much of the world is inaccessible, many of those inaccessibilities can be overcome with money.

Money the world does not want me to have because it does not want me to make a living for myself and have to see people like me in the real world. Money the world does not want me to have because I would not confirm to the useless disabled person they believe I should be. Money they’re able to keep from me.

Society wants me to be poor, and so I cannot travel. It is that simple.

That said, I would love to go to Vegas.

I know I said I was going to write much and I think I’m still going to keep this short and sweet but this one was to good not to answer