Tag: incontinence

So I make a lot of washing sometimes.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Incontinence can be a real treat if you know what I mean. And sometimes I can be incredible unlucky and have issue multiple days in a row, which unfortunately creates a lot of washing, for obvious reasons.

Now I’m not the one that does my washing. In theory I could do some of it, with our current set up. But I would not be able to do a full load of washing, this is currently completely impossible for me to do, due to inaccessibility in my house.

However, even if my house is more accessible in this area, it doesn’t mean that I would be able to complete a full load of washing. I don’t have a physical energy and strength required to do so on a regular basis. And unfortunately, I definitely do not have the strength and energy to keep up with the washing that I produce.

What I’m saying, is that regardless of my set up, I would always be relying on someone else to do my washing. Which leads me to the same problem, I have with needing to be reliant on others to do things for me. I’m relying on them doing it the way they’re going to do it. And I can’t really complain about it.

This is a common occurrence for anyone that is regularly relying on others for help. If you get lucky, you are sometimes able to ask people to do things a certain way for you. But the chances of this happening with regular everyday tasks is unlikely and definitely not possible for me. It actually risks me having any help at all. If I argued every time something wasn’t done the way I wanted to.

Sometimes you have to pick your battles. When you need a lot of help you have to pick your battles a lot of the time.

To anyone that doesn’t need a lot help, this might sound horrible and ungrateful. And in all honesty, I understand where you’re coming from with this opinion. But I have to say you’re wrong.

When you need a lot of help the only way you can get any say or control in your life is by specifying questioning how that help is done. Can you imagine if you didn’t get to say anything that goes on in your life? How difficult that would be to deal with emotionally. That’s what people need help a lot of the time, myself included, are stuck dealing with.

It’s a balance of control, and gratefulness. And the gratefulness gets old.

It’s not that I’m not grateful, it’s the being grateful all the time it gets old quickly. h

I hope you understand where I’m coming from and it doesn’t sound too horrible.

I’m not feeling well.

On By Katy DalyIn My Disability TruthLeave a comment

For me feeling ill is a weird one, because it feels like it changes nothing for me and everything for me at the same time.

I don’t feel a lot worse than I normally do, but I’m just ill in ways that are difficult to deal with.

Put it this way, no one talks about incontinence and sickness plans until it’s to late, not even me.

When you think someone should get it and they don’t

On By Katy DalyIn My Disability TruthLeave a comment

I’m incontinent,

If I had to pick a part of my disability that makes me the most uncomfortable, I would say this is it. So for that reason I try to be as open as possible about it, to not let it win.

Now having grown up disabled, this lovely part of our soecity called exclusion, pushes me to be in the same circles as many other disabled people. A lot of people think that this is actually inclusion, but from experience they don’t actually care what disabled children have in common, the fact there disabled is enough. And pushing is together is easier than creating more accessible inclusive spaces where we just get to be, but now I’m getting a little disstracted here.

As a result of this exclusion, I happen to know a lot of disabled people, simply because they are disabled. Now while this can sometimes be useful, as we have a lot of shared experiences, not everything about us or what we believe is the same, simply because we are disabled. So this can make for some interesting friendships to say to least.

Some of these friends are also incontinent, and this is something that I personally am thankful for that we have in common, due to how I still emotionally struggle with my incontience. Anyway, I was with one of my friends the other day, who pointed out that as a result of incontinece there was a certain smell in the area. Now where she this could have come from many people, but I’m pretty sure it was me. Lets just say she wasn’t very nice about it,

I hope the way I’ve explained this makes sense as I’m still pretty upset by it so I may have been vague, let me know if it doesn’t.

What I don’t understand is no matter who was responsible for the smell, why they had to make a big deal about it.

It’s not like anyone is incontinent by choice, or making a smell by choice, and it could just so easily be them. I think that’s the part that really gets me, I’ve known it to be them before and I have never said anything. Normally I don’t care about things like this, but given who they are and the specifics of the issue, there reaction is really bothering me.

I guess just because you have a certain issue, doesn’t mean you will have respect and understanding for people who also have that issue.

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.

Why did I sleep in my chair the other night?

On By Katy DalyIn My Disability TruthLeave a comment

As a full-time wheelchair user, I’ve become what I call very wheelchair shaped. by this, I mean that unsurprisingly, my most comfortable position is in my wheelchair as this is the position I spent most of my time in. Over 10 years ago, I decided to stop doing physio which likely increased the speed at which I have become wheelchair shaped. But honestly given how much time I would spend in a wheelchair, normally I think this was an inevitability. I think physio would have only put off this happening by maybe a few years if that. And the physio that I had to do would have been aggressive and would’ve had to be consistent to be effective. For those have never done physio it is incredibly painful and honestly simply not something I wanted to waste my time doing. This is informed consent for you. The right to do things that may seem backwards so long as you understand the consequences. And I do and I have. Honestly, I’m happy with the decision I made.

All this to say it’s not a very good idea to sleep in my chair, but I usually have a comfortable night when I do it. so that’s the least I’m good thing I slept well.

But the question is why did I do it?

I try not to sleep in my chair, because I know that, ultimately it’s not good for me to do physically very often. But last night it was something that I had to do. This is because my sister was out at a concert and I can’t deal with the dogs and the carers alone.

My sister was however meant to put me in my chair when she got home. But I told her that she didn’t need to, because I was very dirty due to having warn the same pad for 24 hours.

However in reality the reason I told her that I would sleep in my chair was because she looked annoyed at the idea of having to put me in bed. She didn’t say she wouldn’t do it, and honestly I don’t think she would ever do that because she knows I need the help.

But you know when you just get that vibe off people that they don’t want to do something? It’s really annoying when that something is something you rely on them to do. So I thought it was best to avoid her having to do anything last night, I didn’t even eat.

I have now been sorted out and changed and am back in my chair. But I guess this one is just a reminder that sometimes the people you care for suffer to make things easier for the person caring for them.

This may be something to keep in mind when you’re struggling as a carer. Remember that you had some level of choice in being a carer, the person you’re caring for had no choice in being disabled. And sometimes they feel bad about needing help so try to what they can to help make things easier.

I have one question, would you sit in your own bodily fluids in order to make things easier for someone else?

Forgive me if part of this doesn’t make any sense I wrote the post the day and planned to post is. As always let me know if there’s any mistakes that mean the post doesn’t make sense.

Disability and Insecurity.

On By Katy DalyIn My Disability TruthLeave a comment
Image Description: Myself tilted back in my electric wheelchair under a brown electric blanket facing the camera. My dog, Bella a small brown-haired caviler King Charles dog is sitting on my knee, looking at the camera with her tounge sticking out. In my left hand I am holding my catheter, which is emptying into a bottle you can also see on my knee. My left hand is holding my phone.

This is a photo taken of my me and one of my little girls (my dogs) the other day. I find it such a cute photo the way she is looking at the camera and her tounge is sticking out, melts my heart.

I did not realise until after the photo was taken thar you could see me quite clearly emptying my catheter into a bottle in the photo. No comments on the colour of my urine please, hydration has been a life long issue for me, mainly due to my own issues with excepting my incontinence.

My incontinence is a part of my disability that I have always struggled with. I have no doubt that this is due to societies view of incontinence. I struggled so much with this that I had several minor procedures years ago in order to avoid avoid having any type of permanent catheter in. Eventually I had to put my medical needs over my own social anxiety and have one though, and it was the best decision.

But photos like this still make me nervous. Being open about my incontinence still makes me nervous. This may come as a shock to those who know me, and to those I am open about my incontinence with. When I talk about my incontinence I do so abstractly, as if I’m not even a part of my own experiences with it.

I’m trying to get better at it though because I believe incontinence is nothing to be ashamed of. But sometimes it’s hard to live by the things we believe. But I’m trying to do better, this photo is a way of me trying to do better.

Image Description: Myself laying in bed hugging my dog Bella, she is curled on my shoulder. My pad is visible slightly below my arm in-between the blanket over me and the pillow behind me.

Here’s another photo from about a year or so ago, again with my little girl. In this photo my pad is visible. I actually didn’t realise that anything I might not want the world to see was showing in this photo until after I shared it. While I ended up leaving the photo up, it did cause me a great deal of anxiety at the time. If this was a photo of just me and not me and her I would have certainly removed it.