Tag: incontinence

Incontinence

On By Katy DalyIn My Disability Truth4 Comments

I’ve been peeing on myself my whole life. Sometimes it doesn’t bother me, sometimes it’s the most annoying part of my disability, and I can’t tell which it’s going to be until it happens.

It’s hard to have a problem that society only views one way. To know that because of things I can’t control there’s always going to be some people that don’t see me as an adult, and I can’t change that.

I’ve been asked periodically about whether I would still be disabled, if I had any choice in it. And the truth is, I don’t know. My disability is a massive part of my existence and I don’t know who I would be without it. But one thing I know for sure is that I wouldn’t be incontinent if I had a say it in.

It’s not even the physical aspects that put me off here, though they’re not great. It’s the emotional and social aspects of incomtinence that are the hardest.

If you’re wondering what prompted this post, I’ve peed on myself today. I’m saying it on here, not only to make myself feel better, but also as a reminder that it happens and it’s okay.

I swear my incontinence and disability are just spiteful.

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Minutes after my carers left this morning I did something I have never done before, which accidentally caused my catheter to become unclamped soaking me in pee. But this had to happen on a day where I am going out tonight so have cancelled my evening call. This means that even though I have Febrezed my clothes, thank you mum for that little trick, I will technically have to be wearing damp clothes for something close to 18 hours.

It had to happen today didn’t it?

I just feel like what could already turn out to be a rubbish day, I’ve got concert tickets but not accessible ones, so they may just turn me away. Has had the worst start that it possible could.

This is why I almost always wear black. It’s not a fashion choice really, but something that hides the fact that things like this happen.

I hate it. All of this. It makes me feel like a child, and I kind of just want to cry about it and go back to bed. But I can’t do that as nothing can really be done about any of this. So if I decide to give up I’ll just be ruining the day for everyone else. So I’ve just got to pretend this didn’t happen, smile and move on.

Today already feels like to much, and I’ve not even been awake an hour.

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.

I can’t get changed.

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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.

To good to be true.

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I shouldn’t complain really because thankfully I’ve had help to fix it. But I had to pee on myself today, of all days.

I don’t think I can explain how much this artist means to me. How much it means for me to able to see them.

They were the exception that proved the rule. They were the ones I was willing to suffer in an inaccessible world just to be able to see.

Your music is life.

Thank you.

It’s a rough day.

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I’ve had a rough day emotionally due to my disability today.

My carers didn’t clean me properly and admitted as much this morning. I then couldn’t find something I was looking for which really weighed on me as I couldn’t look for it myself.

Sometimes the things you deal with on a daily basis can just get to you. Today is ond of those days.

I’m supposed to shower this evening and the carers pointed it out, and now I really don’t want to.

Being disabled can be kind of weird.

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Well at least if you’re me.

Today I lost a bottle of pee. A combination of not wanting to have a bag attached to me constantly, struggling with intricate physical activities and becoming easily distracted. Mean that this isn’t actually the first time this has happened to me.

So I guess this one is short and sweet, because I am tired, and a warning not to drink random bottles of liquids that you find in my house or on the street. If you need that warning.

My disability doesn’t care that I have things going on.

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Tonight I’m going to a family party, I have mixed feelings about this for a varsity of reasons.

It’s going to involve me spending the night in my wheelchair and I’m honestly not looking forward to that. But I swear it feels like my body knows I’ll be doing that. My legs are hurting already, and I’m not even in my chair yet.

I’m also hoping that I can poo within the next hour, because if I don’t anything I do after that I’ll be stuck in for more than 24 hours. The joys of incontinence.

The next 24 hours of my life, are going to be as uncomfortable and rough as they are fun.

I’ve got to use ramps that scare me, sleep in my wheelchair, where the same clothes. And I know I’m going to be in my pain.

Just because something will be worth it, doesn’t mean its going to be easy.

Part of me can’t wait to come home to my girls honestly, and I haven’t even left yet.