Tag: Carers

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.

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.

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.

The little lies.

On By Katy DalyIn My Disability Truth3 Comments

Part of being disabled (at least for me) is that I have to trust what people tell me. And for reasons I still don’t understand, they often lie to me.

It’s not big lies, usually. It tends to be just telling me something is washed, or clean, or has been picked up when it hasn’t. Or maybe they looked somewhere for something it’s not there, but when I and look for it it’s very obviously in the place where I said it was. Occasionally the lies are a bit bigger, being told a place is accessible when it isn’t, or being lied to about what the accessibility of a venue is like.

I just don’t understand why people don’t tell me the truth. While the truth would still be frustrating, it’s not more frustrating than a lie. When you rely on people to help you, being lied to is a lot worse than you might realise.

It makes it hard to trust people, when you don’t know if they’re lying to you. And you have to be able to trust people when you’re disabled, my life wouldn’t work if I couldn’t trust the people that I need help from.

But even when they lie to me and I know I can’t trust them, I still need their help. And that can be hard to live with emotionally.

I just can’t really understand how hard it is to tell people the truth.

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.

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.

Starting regular medication.

On By Katy DalyIn My Disability TruthLeave a comment

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.

My carer

On By Katy DalyIn Writing PromptsLeave a comment

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.

I can’t get changed.

On By Katy DalyIn My Disability TruthLeave a comment

So I got very wet from the rain walking the dogs this morning, and as I am unable to change I’ve spent the day very damp. Now that I’m on my way home, I’m starting to dry off a little.

In case this wasn’t clear, once I’m dressed in the morning I generally cannot get changed until the evening. There have been occasions where I have been able to get changed throughout the day, but as I have gotten older and changing has become more difficult these instances have become few and far between.

This is somewhat of a personal choice I suppose. I could have another call in the middle of the day, but this would limit what I would be able to do with my day, and I don’t want to do that. Either way I wouldn’t just be able to call carers back when I needed it, so hanging around for them in the day just doesn’t make sense to me.

So my freedom comes at the price of my comfort, and on most days like today, once I’m wet I stay wet. But hey, at least it isn’t pee. That my friends is what we call an incontinence joke.

But now I’m cold, like to the bone cold if you know that feeling. I’m very glad my day is nearly over.

All this is to say, as I loose the energy needed to write this post. If you see someone with spilt food on there clothes, which yes I also did today. Or wet clothes. Or just something that can’t easily be fixed within five seconds, just stay quiet about it. They may be aware and may not be able to fix the problem themselves. You hilighting it only brings more shame. Additionally wait another 10 if its raining a lot when its time to walk the dogs.