Tag: Try

Trying to be helpful.

On By Katy DalyIn My Disability TruthLeave a comment

So today, I pushed myself to do a lot, I went out of my way to be there for different people in my family. And as my wife always runs on the schedule of my carers, I had to fit doing what I could into them.

Honestly, that’s one thing. I don’t think people consider about getting carers, is how regimented your life has to become as a result. You have to do things at the same time every day regardless of what is thrown at you during that day that might change that. On this day, it was simply taking something that had been forgotten by one person to another, but I had to fit that into everything else I had to do and fit that into my care as well.

I like to do as much as I can for other people, it’s probably some internalised ableist part of me that wants to feel useful because I need so much help off others. As there isn’t much I can do for others, I want to be sure that what I do I do properly.

As I have to get public transport everywhere this can be quite difficult to do when it involves going to different places as it did today. But I do the best I can, and just hope I’m useful.

The struggle of life.

On By Katy DalyIn My Disability TruthLeave a comment

Sometimes it can be really hard to deal with the bad things that happen in life when you are disabled. This is because you are still disabled when the bad things happen.

Over the past few days I have had a family member in hospital, and now that they are home and on the mend I want to write about how that was for me at a disabled person. I’m aware this is selfish but as I’ve said before my blog is my place to be selfish.

It was difficult for me knowing that I wasn’t able to be there for them independently, knowing that I needed help to help them. And trying to be more of a help than a hindrance to there recovering.

Having those around me in hospital is a difficult reminder for me of the perminace of my disability. That regardless of the situation I can’t do a lot of physical things to help. It was difficult to not be able to help as much as I wanted but I did my best and I have to remind myself of that.

I just wish I could do more, because what I can do, never feels like enough.

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.

I didn’t vote today

On By Katy DalyIn BlogLeave a comment

Tricked you.

I did vote but my post so I didn’t vote today, technically.

But I hope you voted ( If you’re reading this from the UK, you should know what i’m talking about). Even if you’re like me and don’t know a lot about politics and find it all very confusing, that’s ok.

Having a say is better than having no say at all. Voting is a brilliant example of this.

That’s all I have to say on the matter. I’m sorry it isn’t more inspiring or insightful. And I’m sorry. I’m sorry I’ve posted it so late in the day, I’ve had a very busy time, not voting, because I already did that.

OK, I’ll stop now. I know I’m not as funny as I think. I am.  

Just do your best today and that’s good enough, though that is, of course, of course true of every day.

Cyril controls more than I wish it did, but I’m trying.

On By Katy DalyIn My Disability Truth, Writing Prompts7 Comments

If humans had taglines, what would yours be?

If I tell you that Cyril is the name I use to describe my cerebral palsy, this tagline should make sense.

Naming my cerebral palsy helped me to separate it from myself, and find who I am outside of my disability. But I still often feel trapped by my disability, though I’m trying to make the best of my life.

It’s hard living your life knowing that you will never get to live the life you feel like you should have had, and knowing there’s nothing I can do to get that life.

If I’m being completely honest with myself, I feel like my disability robbed me of a better life. And logically that’s just sad.

Sometimes all you can do in life is the best you can do, and that has to be enough, I guess.

All the little lies

On By Katy DalyIn My Disability Truth1 Comment

A lot of people lie to me. It’s a lot of little lies.

I’ll be here at this time – they’re hours late.

Yes I did that put it away – it’s still on the table.

I left it somewhere- it’s somewhere else.

I hope you get what I’m talking about. All these little questions that I have to ask people because I cannot check for myself, or because I’m waiting on them to help me. And yet I’m often lied to. Sustain

I don’t think they lie to me on purpose, I think they think it won’t matter or it won’t bother me. Neither of those things are true it does matter, and it will bother me. It will only bother me because they lie. Even if the truth is worse, at least it’s still the truth.

I have relied on people for many years, for all my years. And I will rely on people for the rest of my years. I don’t think it’s to much to ask that they don’t lie to me, but they tell me the truth.

I know, it might seem silly to get so caught up on such small lies. It makes sense to be bothered by the big things. The small things seem so unimportant. But I think it works the other way around, at least for me. The big ones seem like lies everybody gets, the one day I win the lottery lies. The little bits of hope in the darkness. The little lies seem made just for me. Like someone else is trying to decide what truth I have access to, what life I get to live, and that I do not like.

I just want to be treated the same way as everybody else, with the same respect, the same honesty. Is that really too much to ask? Or am I actually being treated that way? Is everyone being lied too like this? I just don’t know? If that is the case, do I really have a right to be upset? Or does my right to be upset by this come from the fact that I do not know? I’m honestly not sure.

I don’t think it makes it right, even if others are being lied to. I believe they deserve the truth as well. We all deserve the truth. That no one else should get to decide what we get access to.

Why is the truth that hard for people.

Everyone needs a break.

On By Katy DalyIn My Disability TruthLeave a comment

It’s makes perfect sense that everyone needs a break from things. But sometimes it’s difficult to know that you’re the thing that someone needs a break from.

Logically I obviously know this, but sometimes it can feel like you’re the problem for being something they need a break from.

I just wish I wasn’t the person people needed a break from. I wish I wasn’t that complicated for others to deal with. I wish I could just exist in the world without needing others. But it is the way it is. And I’m always going to need people. I just need to accept that and try to remember that that’s not my fault.

I’m not trying to make this about me, I’m trust trying to deal with the emotions of this so my emotions don’t affect them.

I hope that makes sense.

Incontinence

On By Katy DalyIn My Disability TruthLeave a comment

Incontinence has been some thing, I’ve suffered with my whole life. it’s difficult for me to know whether it is a direct consequence of the brain damage that has caused my disability, or from being in a wheelchair, my whole life, and not being able to get myself to the toilet. I’m not sure distinguishing between the two really matters.

The question is why am I writing about this now?

My incontinence is something that always affects me, however, like many things are instances of being more of a problem at times than others. Tonight was one of those nights.

Unfortunately, there’s nothing I can do about being wet this evening, but you get used to being a little bit wet when you are me. To be honest, it’s just the way it is.

Tonight it bothered me though, and I’m not sure exactly why.

Sometimes it’s just hard being disabled. Sometimes it’s just difficult.

When you need help you can’t control it

On By Katy DalyIn My Disability TruthLeave a comment

I recently bought a new washing machine, that currently sounds like it’s going to fly out of my kitchen. There’s a problem with the water pipe in the back of it, and while I understand from what I’m told how to fix the problem, I am not in a position to do that at all.

This is a regular occurrence for me, understanding a situation but not being able to act in it, so you would think I’m used to it. I’m not. It’s almost always hard for me to deal with. It’s definitely hard for me to deal with right now.

I am lucky to have a lot of help in my day to d ay life. But with needing that help comes the reality that you are unable to control the help. This is where you get to be mad at me for sounding controlling, but let me defend myself for a minute and say I think it’s more like lack of control.

When there’s a problem, I want it solved. When I can’t be the one to solve it, I have to wait.

And I know this is something that everyone deals with, but for me, it’s different. For me, it’s almost every problem, and certainly all the physical problems, that I need to go to someone else for. That I have no choice but to wait to be solved.

I’m tired of it.