Tag: CP

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.

Trying to be helpful.

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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.

Oh the weather outside is… Sunny?

On By Katy DalyIn Blog2 Comments

Okay, so I know it’s not Christmas, but I couldn’t resist titling this post that way. It’s not actually a very positive post, well it sort of is, but this makes me feel even better about it.

So today I went to see some family, and I had to stay in the garden. Surprisingly, for where I live the weather was okay, but that doesn’t mean I was very happy about the whole experience. Obviously would’ve been worse. Had the weather been bad, but either way it’s uncomfortable for me to go to places where all I can do is wait outside.

The reality of most housing not being accessible to you, is more than the fact that you are often limited in the housing you can live in. For me I will likely never leave my current home, it was very difficult for me to find somewhere that’s even partially accessible. But also that you often cannot visit anyone in there, homes because you cannot get into them.

There is almost no one out of all my friends and family that I am able to go and see due to the accessibility of the house that they live in. And if I’m being honest with myself, this is something that I find really upsetting.

Logically I know it’s too much to say that I wish they would only live in accessible housing, but also, I wish they would live in accessible housing. I wish that it wasn’t too much to ask to want to be part of my family.

It gets really frustrating when you are the one that has to make the compromises in order to spend time with family, and I am yet to find a way round it. Having them come to my home is also difficult because it means I have to get my home ready for visitors. This is something that I’m not able to do, and don’t worry about the way that anyone visited my home judge me for that. For this reason, I don’t have a lot of people visiting my home and that is honestly the way I like it.

Another part of the reason that I don’t like having people over in my home is because I have a lot of strangers in my home regularly, in the form of carers. It makes me not like the experience of having other people in my home if I’m honest, whether I know them or not.

For this reason, it was strongly suggested that we meet somewhere else in order to spend time together. Mainly because given where I live there is every chance that it might rain, and I didn’t want to have to get wet, as I can’t easily change. Though in this instance that didn’t happen thankfully, it was still a risk, and not one I was very comfortable in taking but needs must.

From experience if I don’t take risks such as going to people’s inaccessible homes in order to spend time with them. Or going to events at just about accessible venues, which are still inaccessible as far as I’m concerned, then I’m often blamed. In the past it feels as if others believe I have chosen not to participate in the get together. Rather than it being the venue and the lack of planning on the organises part, that are the reason I’m unable to attend.

As a result of this happening repeatedly, I haven’t internalised this as being something wrong with me. As if it is my fault, I am not able to spend time with friends and family and therefore I must compromise when I can in order to do so.

Today, as I have said, it went well but it doesn’t always. And I have to admit I’m left wondering when others will compromise to spend time with me? Honestly I know the answer is never, as non-disabled don’t find themselves in a position where there need to compromise in the way that disabled people do.

But it would be even better if more homes could be accessible and I would I simply be able to go and see those that I care about in their homes.

More homes need to be accessible to disable people. So that we get to be part of society and our families properly.

Please forgive me if this one doesn’t make a lot of sense I can’t really figure out why but I don’t feel like it does. I hope you get the gist of it anyway.

It’s a bit much.

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A bad experience at a concert can really through me, and that’s what happened last night.

If you want to know more specifics about the experience you can see the TikTok I made here. A poor inaccessible experience, and that’s putting it lightly, throws the entire image I have of myself as a disabled person into question.

It makes me wonder why I even try, if I’m just going to be treated like that. It makes me wonder why I even try. It makes me feel more disabled. 

It shows me without a doubt that it’s society that makes me disabled, and that makes me sad. It makes me sad because I know there’s nothing I can really do about the way they want to treat me.

I just want to enjoy a concert. I don’t understand why that’s to much to ask.

Access

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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

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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.

I wish life had a turn off notifications button.

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So I’ve causing a bit of a problem or raising awareness depending on how you look at it, of the wheelchair accessible places on trains. Due to the wonder of the internet, what I have said got a little bit too popular, which means it hit the wrong audience in areas. But when it all got too much, I was easily able to just turn off the notifications for posts, and I’m here to say I love that.

Sometimes when people are being extremely ignorant, wilfully or otherwise. It can be hard not to continue to reply even when you know that you’re not getting through to them. Wilfully ignorant people have to want to learn something new in order for you to get anywhere with them. But this can be hard to remember in practice, especially when the truth is very often don’t want to hear anything other than their own experiences.

So you can end up going round and round in circles very easily. And it can be extremely helpful just to be able to turn the notifications off and have the circle be ended for you. But sometimes I wish possible to do in real life.

It can be hard to let things go even when you know that you definitely should. And I think it would just be nice if someone or something else could do that for you. Not necessarily permanently, but just so you could have a break.

In a world where we carry devices, we can be immediately contacted on with us all the time, I think that a leave me alone future for real life would be extremely helpful.

Maybe I’m the problem though. Maybe I just shouldn’t be drawn into such arguments so easily. But it’s one of the reasons I love social media, I get to argue my argue my points, state publicly whatever I believe is right, and my disability does not get away with me doing this.

Say what you want about social media, but it certainly has its advantages alongside its well known disadvantages. Perhaps so if you’re supposed to have a limited view of the world due to its accessibility.

I haven’t decided yet if I’m going to share more about the accessibility of trains, as has been my focus for the past few days. It’s not that I don’t believe in the importance of what I’m arguing for, I know that I’m right. But I just don’t have the energy to write about it. It really sucks when you never have the energy or motivation to do the things you enjoy, thanks fatigue.

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.

Functioning on little sleep

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So this is another backdated post.

Today was very busy with almost no energy. I slept 2 hours not consecutively, then had to get up and go out. I didn’t really stop until I got home about an hour before the carers. I then fell almost straight to sleep and woke up the next morning. Not including briefly being woken up for care which I honestly don’t remember. 

I barely had the energy to function and do what needed to be done, let alone write, hence the backdated post.

I guess my need for sleep finally caught up with me. This happens occasionally. I just wish it actually made me feel like I’d slept.