Tag: Cerebral Palsy

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.

On my own.

On By Katy DalyIn My Disability TruthLeave a comment

So today I’m set up to be on my own all day. I have my coffee and my hot plate, which I’m counting as an accessibility aid, and should really do a post on. But I have everything I need. I think.

And that “I think” is the real concern. I have to think not only about the things I need in the moment, but I anything I may need for the rest of the day while I’m on my own. And I don’t always get it right, I usually forget something. I forgot my fan today, but that’s nothing major.

You have to be more organised when you’re disabled. You just do. You have to try and think ahead about the immediate future all of the time. You’re the one that suffers if you’re not organised enough.

I’m far more organised that people might realised, it’s just organised chaos, to be honest with you. I’ve set things up so they work for me, even if it looks complicated for you. And because I’m not set up as far in advance as some they may not realise just how organised I am.

Today is just about being ready for today, and that’s enough for me.

I know I’ve posted about not being able to be on my own, but today is a day where it wouldn’t be fair to the person I live with to not be on my own today. They wouldn’t be able to do what they wanted to, and I really don’t want to stop them living their life.

Sometimes me being alone is about other people, and it’s just a risk I have to take.

Independence is time dependent.

On By Katy DalyIn My Disability Truth2 Comments

I’m sitting here unable to sleep because I need help but I cannot get that help until the morning.

When a key part of your independence is needing help from others, you have to wait till they’re ready to help you, to be independent. So it can feel like you have zero independence at all.

Now I don’t have the emotional ability right now to argue how I’m still independent despite needing help and others are just a tool to get me what I need. I’m really struggling right now I feel so broken.

I tell myself I’m an independent person, but right now I’m not feeling that independent. I feel like a child who needs help with everything.

There was going to be more thought into this post when I started it. But I think the lack of sleep from an incontinence incident that I’m stuck waiting for help with is getting to me.

I don’t wish I could walk, it’s all the other things I can’t do because of my disability that get to me honestly. Like all the help I need. Like having to wait for others to help me. Not getting to do what I want when I want to do it.

It’s just hard right now.

Even when I sleep I’m tired.

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I’m writing this post at 2am the following day. It will be backdated.

I woke up after sleeping for 7 hour, still tired, in a wet bed. Incontinence sucks, let’s just leave it at that.

I’ve slept so much recently and it hasn’t made me any less tired and that just makes me sad. Fatigue is an overlooked problem in society. People thinking being tired isn’t that bad but honestly it’s hard to deal with.

Struggling now as I know I’m not going to be able to shower tomorrow. And I will definitely be tired all day today, even more so because I woke up at 2am.

Chronic Discomfort

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So sometimes I struggle to say I have chronic pain. I mean I do, but I’m just so used to it, that I don’t think it always registers as pain. It’s like I’ve turned it down to get on with life. This is probably something that only people who experience chronic pain understand.

But something that’s chronic but not constant that I haven’t figured out how to turn down is my chronic discomfort.

I tried to look into chronic discomfort, as that’s how I learn to deal with things, to learn as much about them as I can. But I couldn’t find anything, and it kept taking me back to chronic pain.

My limited research does have me wondering if I’m making it up, if it really is just the same as chronic pain, or if chronic discomfort is something that exist but just something that hasn’t been looked into before. It’s just that that chronic discomfort and chronic pain feel very different to me. Maybe this is really about how I register pain, I honestly don’t know. But I think it’s something that needs to be looked into more.

Chronic discomfort for me, doesn’t involve pain as such. But to me it feels like you’re not physically sat in your body right, and there’s nothing you can do about it. Like no matter what you do you’re not in your body right. Like when your socks aren’t on properly, but you can’t pull them up. That feeling, but everywhere? I hope that king of makes sense.

Now I know how to register the pain, I know how to explain the pain. But the discomfort is something else. Something I find it hard to explain, even to myself, because it’s not pain, it’s almost worse. That’s why I want to read more about it, to understand it better, but I really can’t find anything.

All this said I didn’t spend a lot of time looking for stuff on chronic discomfort, because fatigue. But if anyone out there is better at research than me or just knows anything about chronic discomfort, I’d love to know more.

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.

Starting regular medication.

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Before I get all weird about this, I’m going to say it’s just eye drops, so it is really me being a little be extra about all of this. But this is my blog, so the only place as I get to do that.

All my life different medications have been pushed on to me. This is the standard treatment for your condition etc. So as soon as I was old enough, I decided that I would not take any medication or anything like that until I understood exactly why I needed to take it. This for me extends to creams, drops, painkillers, muscle relaxers, anything.

To be clear I’m not against medication, I will, and have taken antibiotics. I will finish the course. I will also take painkillers and muscle relaxers if I deem them necessary. But taking preventative things is not something I like to do.

Muscle relaxers for example, work best when taken regularly. But it was hard for me to take them regularly when there were days when I wasn’t in pain and it just seemed silly for me to take them. Specifically where muscle relaxers are concerned they would make me drowsy and as I already have fatigue, I have just never found the side effects worth it.

I have always been very aware of the likelihood of me needing to be on some sort of medication at some point in my life, so I didn’t want to start taking things earlier than necessary. Part of this is because I know that medication can stop working if you take it for long periods of time, so I have always wanted to be sure I definitely need to take something before I need to take it.

So the need for the eye drops have been explained to me, very well. And I will of course be using them, to protect my eye sight. But I kind of feel a little weird about it.

I feel like I have reached a milestone in my life, a weird milestone, but a milestone nonetheless. Given my disability getting this far in life without needing medication is something. I don’t want to say impressive because I know that taking medication is not a bad thing. But it’s starting now, for me, I guess.

It’ll be fine, I know. And I will get used to it, like everything else. But my first toe in the pond of regular medication, had to be something I needed help to do, didn’t it? I can’t do eye drops on myself. And that makes me just a little bit sad.

I just want to be able to do things for myself, but the list of things I can’t do for myself continues to grow. I know it’s not bad to need help, but it’s just hard.

As I said I know I’m overthinking this but I honestly can’t help it with this one.

Freedom.

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

What are the most important things needed to live a good life?

I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.

Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.

Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.

Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.

A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.

I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.

By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.

When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.

I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.

My carer

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Who do you spend the most time with?

To be honest I wanted to say my fur babies, and be more positive with answering this question, but then I thought about it.

I thought about the fact that I can’t really be left alone for long. That when I am more than not something happens that I need someone’s help for. And how that means that I often spend a lot of time with the person who carers for me more than anything.

Often I relish the small amount of time I am able to spend on my own, with my own thoughts. As it doesn’t happen often, where I feel completely comfortable, I truly enjoy it.

Sometimes I just really wish that I didn’t need to be with someone all the time. That I could manage the little things in life myself.