Tag: Independence

I’ve talked a lot about this recently.

On By Katy DalyIn Blog, Writing PromptsLeave a comment

What would you do if you won the lottery?

I think it’s something that everyone talks about from time to time. Even when you know it’s never going to happen, it’s good to dream.

But I don’t even play the lottery, I don’t really have the money to waste, so I’m never going to win am I.

But let’s still give the question a go.

I used to say that I would by an accessible camper van. So I could live somewhere that was completely accessible to me, travel where I wanted, and see family. So that I could stay somewhere else without having to be uncomfortable. I even used to say that I would pay for carers to be on call 24/7 and follow me around in there own camper van.

And while this idea is nice, and maybe something I would do if I won a lot of money, I don’t think it’s where I would start if I won the lottery any more.

I would start with doing up the flat I live in now. Making it look nice and a little more lived in than it is.

I would then buy some more up to date tech. A good computer, a good phone things like that.

I would then stock up the house, get some better appliances than I currently have. I would make sure rent and bills are paid well in advance if possible so I wouldn’t need to worry about them.

Then a holiday, abroad. Somewhere hot maybe, or somewhere I’ve always wanted to go, Las Vagas, maybe. Or I’ve always wanted to go on a cruise, that would be fun. Or even just to say somewhere in a posh hotel.

I would also love to try a spa, get a new tattoo, get my hair done professionally. Those types of things. Maybe I could even get a jacuzzi in the garden with a hoist so I could use it.

Maybe then a car, and learn to drive.

What I find interesting about what I would do if I won the lottery, is I would just live a more accessible life. I would just like to explore the world a bit L, and live in little more comfort.

I don’t think that makes me different from many people. It’s just the money might be spent a little differently in order to active it.

It is likely to cost me a lot more to live a comfortably life, because of my disability. Life is more expensive when you’re disabled. Added to this is it is harder to earn money, and when it’s harder to earn money, you have less of it, which makes things altogether more expensive. And the inaccessibility of the world costs money to solve.

Life is just altogether more expensive when you’re disabled. People including the government somewhat recognise this, but no one who doesn’t live this life, truly understands the cost of disability.

Every Mark

On By Katy DalyIn BlogLeave a comment

I know I’ve posted about this recently, but my sister hit my door in my chair, accidentally of course, and so it’s on my mind again.

When my walls or doors get marked, there’s nothing I can do about it. Shoddy cheap council paintwork means they get marked very easily.

My house looks horrible and there’s nothing I can do about it.

I can’t repaint, because I would need to pay someone to do it for me and I don’t have the money to do that.

I will never be able to live in any kind of home that I can be happy with. And every time I mark the wall or door or floor I’m reminded of that.

Being disabled sucks sometimes. Needing the help of others, and not being able to afford to pay for it every time you need it. Is draining.

The middle of the night.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.

As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.

I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.

Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.

Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.

I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.

But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.

I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.

I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.

I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.

It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.

I am an adult.

On By Katy DalyIn My Disability TruthLeave a comment

As I write this I am at my friend’s. It is about 9pm, and my dad just called me to tell me they think I should go home. He says that it’s other people he’s worried about and not me and my ability, but it honestly doesn’t feel that way.

When I was out the other night with my sister he didn’t have this problem, and I was out a lot later. But then I wasn’t alone, so someone he views as more responsible was there.

I know he worries. But I honestly don’t think this is fair anymore.

I’m an adult. I am not less of an adult because I’m disabled. His worry for me is actually ableism.

Don’t worry I will get myself home.

Do you mind if I let myself in?

On By Katy DalyIn My Disability TruthLeave a comment

As I write this I’m sat with my brother in my room waiting for my dad to come and pick him up. This morning he asked me if it was okay if he let himself in to my house when he got here. And of course I said yes because that just makes things easier for me.

But instead of being struck by a sense of independence that he would actually ask my permission to come in the house. I was hit with a sense of playing house. This idea that I will never be an actual adult and I’m always going to be pretending at being a grown up.

Why I do recognise that this is something everyone has to deal with, this imposter syndrome of adulthood. I think it’s harder to believe you’re an adult when you need help a lot of the time.

Not only being an adult but believing you’re an adult is a learning curve, and I’m trying. Today’s just not a great day for believing.

Someone offered to help me

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Yesterday when I was out someone offered to help me without my asking. And I know they mean well but honestly it made me a little uncomfortable afterwards.

I appreciate the thought but it makes me feel out of control to have people just step into help me without me asking for it.

Sometimes I would rather struggle and do something myself than ask for help. And I know that seems counter productive from the outside, but I’ve worked hard to find ways to do things myself and when others step in without me asking it ruins the way I’ve figured out doing things.

This is just a reminder that if you’re helping people without asking them first, that maybe helping them is about making you feel good and not actually helping them.

Nighttime.

On By Katy DalyIn Writing PromptsLeave a comment

What’s your favorite time of day?

I prefer the nighttime because either I get to work or sleep. Yes, right now I am technically doing either because I’m procrastinating both. But it’s the only time of day when I’m completely on my own, left to my own devices, and freedom.

I feel so much less disabled on my own sometimes, but usually at night. No one expects anything of me and I am free just to be me. That said the trade-off is being stuck in bed, but I accept that you can’t win them all.

I lost something

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I have very limited control in my life, therefore the control I have is very important to me.

This translates into a few different areas into my life.

One area is the files on my computer. This makes sense when you realise that I can put everything where I want and in whatever way I want. There is no way my files will never not be accessible to me.

I think this is part of the reason I got so upset when I lost a file the other day, which I still haven’t found. It’s because I feel like I’ve lost control in an area where I had control, and that’s scary.

The file isn’t even that important, and I’m working on getting a replacement for it.

So this one’s to say don’t judge what other people find important because you don’t know why it is that they find it important.

They were late.

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The carers were late for my call this morning even though I told them I had an appointment this morning. Luckily as I was able to rush, I was not late for the appointment.

But I’ve now put in my first complaint with this company. I understand they’re busy, and 7am is a hard call, but they shouldn’t have agreed to take on my call if they couldn’t do the time.

The time is important, for me and for my independence. And they’re making living my life feel impossible by simply b

My carers are lying to me, again.

On By Katy DalyIn BlogLeave a comment

I swear there’s no other job that you can lie so much and it somehow be expected. It makes no sense.

I really dont understand why my carers can’t just tell me the truth.

All they would have to do is be honest with me about doing the job they agreed to. And yet they don’t, they’re late and they about it. And I feel like I’m the horrible person for being so upset about it, for simply expecting them to allow me to live my life.

I’m trying to think that they’ll be one day that my carers won’t limit what I’m trying to do. But sometimes it feels like living any sort of independent, accessible life is impossible.

I’m just tired.

Tired of trying.

Tired of my trying not working.

Tired of it being so hard to try.

I don’t feel as disabled as my carers often remind me that I am. I don’t think they’re used to that. Someone that wants and believes they can live the life they want, or at least as much of it as possible, that is as physically disabled as me.

I don’t know when my carers are not going to be a problem. I need them. But I also want so badly to be free of them.

For now though all I really want is for tell me the truth.