Tag: Disabled

First night.

On By Katy DalyIn My Disability TruthLeave a comment

Tonight is my first night in my home alone.

My sister, who I’ve written about here before but tried to be vague with, has moved out. She was my carer but is now pregnant and therefore can no longer do that. In order for the flat to be accessible to me it is also cannot be made safe for a baby, so she had to leave.

It’s been complicated, but I would be lying if I said I wasn’t relived that I am alone now. Which is weird because I didn’t expect this level of relief, if I’m honest. I thought I would be more anxious. But instead I feel good. And the house isn’t even completely mine yet. I’m looking forward to how I’ll feel when it is.

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.

It’s the only place I get to be me.

On By Katy DalyIn Blog, My Disability Truth, Writing Prompts3 Comments

Why do you blog?

While, I started this blog with the more specific topic of accessibility, it has become more about my life generally. I thought that I started it initially as a place to share inaccessibilities that I experience in my life, starting with this more specific topic, hoping it would keep me writing. I did this specifically as I have tried and failed at blogging for a continued period of time. But for some reason, this blog stuck, and it’s still going.

I think it leant itself towards my life experiences generally and some other bits of writing. And trying to post daily blog posts, though I have had to backdate a few became a clear motivator in keeping me writing. As well as giving me something in the day that felt like my own, and if I’m really honest with myself something that it didn’t feel like my disability prevented me from completing.

My blog has become my space to write about the things I feel in a more free way. And though I don’t feel completely free to share everything openly here, it is one of the places I feel most free on all of the internet.

And now because I haven’t slept, I’m going for a nap. Have a good Saturday.

Shower night.

On By Katy DalyIn My Disability TruthLeave a comment

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.

When I tell you I forget I’m disabled.

On By Katy DalyIn My Disability Truth5 Comments
Image Description: Screenshot from a Tumblr post from un-monstre, the text reads: Disability will have you thinking shit like ” I’m not even that disabled. I can manage as long as I limit myself to very specific careers, never go shopping for more than an hour or two at a time, Keep my plans open so I can cancel and stay in if need be, I’m only going out a few nights per week at the most.”

When you look at it like that. It’s kind of sad.

Why will I not work for free?

On By Katy DalyIn BlogLeave a comment

To be clear I don’t believe that anyone should ever have to work for free, volunteering or otherwise. If you choose to do so that’s completely okay, but only if this is a free choice, and for most people I believe that this isn’t the case. Most people seem to find themselves unable to get a job where they can be paid for there work, and so end up working for free, these situations are not a choice as far as I’m concerned. They may have no other options, and so this cannot be considered a free choice, if it’s the only choice you have.

Working for free is never something I will choose to do, but I recognise that I am in a privelleged position to be able to refuse to do that. I am able to get by in life from the benefits that I am entitled to, but so long as I am in that position I will not work for free. Beyond my inital statement, that no one should work for free, which of course also applies to me. I have more personal reasons why I will not work for free.

The biggest reasoning besides believing that I should be paid for my worth like anyone else, for me is energy. It will cost me a lot of energy to hold down even a part time job, that my friends is the joys of being disabled and having fatigue, I cannot affrod to waste the limited physical energy that I have, on something which does not benefit me, and I know that may come off as selfish but I honeslty think it’s fair. On top of this I must also consider the way that me working, will impact the benefits I am on, and the bills that I currently have to pay. Without boring anyone reading this, let’s just say it’s an incredible complex system, that means that only working either bellow or above a certain amount will be of actual benefit to me. As such I can’t just take any role for any amount of money that is offered to me, this further limits the already limited work I am able to do. I have to be smart, physically and finacially.

In a world that doesn’t want me to work, and would be quite happy if I did nothing at all with my life, it’s hard to fight against it at all. I don’t alwayes know if I want to fight against it all, maybe it’s just better not to try, but that’s what they want to me to think, right? And it feels like all I have left is to push against people wanting that.

It’s an uphill battle for everyone to work in the modern world. And lets just say, hills have never been designed for those of us in wheelchairs.

Now, you may be wondering what prompted this post, well let’s just say family pressure. Family pressure without truly understanding what I’m up against. Family pressure without understanding the complex of the situation. Family pressure that has been hypoctical to say the least, from those who had opotunities I never had, and threw them away. It’s fustrating to have people that don’t know your life, believe they do, and try to tell you how to live it. I’m trying and I just wish that was enough.

Access

On By Katy DalyIn BlogLeave a comment

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.

I’m supposed to show tonight

On By Katy DalyIn My Disability TruthLeave a comment

And I really don’t want to.

I’m sat here in what I call my comfy chair thinking about the fact that I am comfortable, and in about an hour I’m going to be a lot less comfortable.

When you’re disabled, you often have to do things on other peoples schedule. Which means I have to have a shower or at the very least get into bed in an hour whether I want to or not. Now this is strictly true because I can say if I want to both of them.  but if I was having a shower today, I can’t have one until Tuesday. And if I say no to getting in bed it also means I’m saying no to getting changed. This means I will be uncomfortable and dirty by the time the 12 hours have passed and I’m able to get that care again.

So I don’t really see it as a choice, when the decision is so stacked against me. Do it later, doesn’t really exist for me, and on days like today that can be incredibly frustrating.

I just don’t want to move. But I know I’ll have to soon.

Sometimes I get fixated.

On By Katy DalyIn My Disability TruthLeave a comment

Sometimes I get fixated on damage in my home or dirt I can’t clean or something like that. The only way I’ve found to distract myself from it when something new happens, is to go through the old marks and damage in my head so I feel better about the new thing being less important.

Currently it’s orange juice that I may or may not have spilled on the floor. I can’t actually tell from where I am. I’m reminding myself it’s not as bad as the marks on the wall.

This is the part of disability that you might not even consider. When someone is stuck in one position in the room.