Tag: Help

The rules of needing help:

On By Katy DalyIn My Disability Truth1 Comment

The rules of needing help are as follows:

  1. Always be grateful. 
  2. It’s on there terms not yours. 
  3. Say please and thank you for every little thing. 
  4. Remember as much as you possibly can about the things you need help with all at once. 
  5. Always be grateful. 

No one talks about the rules of needing help, they only seem to exist when you need a lot of it. That help is almost always given on the condition of those giving it, they’re doing something for you after all. If you’re lucky they’ll ask you specifically about the type of help you want, exactly where or how you want something doing. You basically have to be a god to have a say in when you get it done. You don’t get something done how you want and when you want it for free, being unable to do it yourself doesn’t matter. 

Did you know that bigger tasks are comprised of a lot of smaller tasks? Sure you want that moving, but you also need to know what you going to do with the other thing you need to move out of the way to put it where you want. They’ll have to move that as well, and deal with the rubbish. Get ready to be thankful for each individual step. 

Even if it’s there job, to do the same things they’ve been coming to do daily, watch they don’t randomly want a thank you out of nowhere to make themselves feel good. Give it anyway, just in case. I know this sounds a little extra, but think about needing help for a lot of things and having to thank someone every time, I promise you it gets old fast. It’s not that I’m not grateful, it’s that everything becomes something someone else is doing for me I remind them of it, my existence becomes about others helping me. 

On that note, remembering that others are helping me, means I go out of my way to try and remember all the things I need help with at once. This makes it easier for them to help me, and makes sure I get all the help I need. But if I’m honest with myself it’s more about the first part than the second part. No asking someone for something when they’ve just sat down, even if that’s when you remember. Side note though, don’t ask them for to much, then you’re just being to needy, it’s up to you to find the right balance there. 

And lastly, again, always be grateful. No one wants to help people that are ungrateful, and when you need a lot of help you have to be nice enough so people want to do it. You’re the one that suffers if they don’t, if they just decide to say no. Don’t risk it. 

Chocolate

On By Katy DalyIn My Disability Truth, My WritingLeave a comment

What snack would you eat right now?

At least that’s what I said even though it wasn’t really what I wanted. What I actually wanted wasn’t even food, but a lot of the time I don’t feel like the things I want are important enough for me to ask for. \

What I really wanted was for my little girls polar bear teddy to be moved so that it sits over her urn correctly. I don’t think really that’s too much for me to ask for, but I know that the person helping me will think that it is. So I felt I had to make up something more acceptable that I needed there help with, like the fact I wanted some chocolate.

That is one thing I’ve learnt after having a lifetime of help from others, people will judge you for the things you need help with. They might still do the things you ask them to do but they will be very strange about it, and if you ask for to many things that fall into the category, they will simply choose not to help you anymore.

When you need a lot of help from others, you have to have your life run by them. It all ultimately comes down to what they will actually do for you, if they say no, then you are stuck.

I don’t think people really understand what that is like until it happens to them. It is really hard to grasp what it is really like to have everything in your life controlled, and as a result at least in some way judged by other people.

It’s difficult to believe I have a right to have a say in anything in my life, when I know anything ultimately comes down to others. That is why I struggle when people ask me what I want in any situations, because it just feels like that ultimately doesn’t matter.

Anyway, as for now I have the chocolate, so I’m going to eat some now at least.

When you don’t like being around people but you have to be.

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One part of being disabled that people don’t talk about is the fact you have to be around people that you really don’t want to be around.

There’s no, I don’t want people like that in my life, when you need that person in your life. Cutting them off puts me in danger.

I’m not really a people person, but I’m forced to be a person that is always around people. I’m always waiting on people, waiting on them to do everything for me. To get me up in the morning, someone to make me food, to get me a drink.

And I’m supposed to be grateful. Always. It can never be to much that they’re helping me, while something I need at the same time. That just doesn’t make sense to people, when I’m getting the help I should be grateful, always.

The minute I’m questioning how they do it, asking for something some a specific way, or just having a bad and seem off when being helped. I’m not being grateful.

Living alone.

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So first I want to apologies for my absence. It feels weird to continue life after losing someone close but life continues to go on whether you like it or not, so I’m trying to get back into this.

So the person who I live with is pregnant, and they are looking at moving out. So that leaves me at least eventually when they can find somewhere to live, living alone. And while there is no time scale on when this will happen, I’m still trying to plan for when it will happen. For whatever living independently is going to look like for me.

But living independently for me also means living with a dog, I can’t imagine my life without my babies. But one of my carers is very concerned about my ability to manage and in all honesty it’s getting on my nerves now. I’ve not even started trying and she’s already expecting me to fail because I’m disabled, I just don’t think that’s fair.

Sure it’ll take some working out, but I can do this. And I’ve got time to work it out. The only problem I can see is that she sometimes goes to the bathroom in the kitchen in the night. This is something I can clean up once I’m up, but obviously I won’t be up until the first time the cares have been in the morning. And if it really bothers them they can get stuff ready including water the night before, the bathroom is through the kitchen, so they won’t have to go through the kitchen until I’ve had the chance to clean everything.

I literally cannot think of another issue with having her that I can’t solve.

Any anything that might be a little more difficult is just worth it to have her, to live with her, to have my baby.

I deserve comfort and love. And a chance to live my own version of independence and for me that includes living with a dog. I don’t think that’s unfair, even if she sometimes goes in the house. It’s not like I have no way of cleaning it at all or I’m asking them to do it.

Anyway I have time to sort this. I just wish people would leave me to my business, and at least let me try before they’ve decided I’ve failed.

There’s a lot of change in my life lately, none of which I have been able to have a say in. And it’s very annoying to have people judge how I’m dealing with it all, when I’m just trying to do my best.

Image Description: A picture left to right of my yellow Labrador, brown and white caviler King Charles and grey cat all lying or sitting on my bed on a blue blanket. Behind them is two asexual flags on the wall.

The struggle of life.

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Sometimes it can be really hard to deal with the bad things that happen in life when you are disabled. This is because you are still disabled when the bad things happen.

Over the past few days I have had a family member in hospital, and now that they are home and on the mend I want to write about how that was for me at a disabled person. I’m aware this is selfish but as I’ve said before my blog is my place to be selfish.

It was difficult for me knowing that I wasn’t able to be there for them independently, knowing that I needed help to help them. And trying to be more of a help than a hindrance to there recovering.

Having those around me in hospital is a difficult reminder for me of the perminace of my disability. That regardless of the situation I can’t do a lot of physical things to help. It was difficult to not be able to help as much as I wanted but I did my best and I have to remind myself of that.

I just wish I could do more, because what I can do, never feels like enough.

One day when I am left home alone, I won’t drop anything, I hope.

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Yes, you’ve guessed it. I am home alone alone and have managed to drop something yet again.

It’s not that important and while the consequences are, I will be uncomfortable. I am still safe so that’s all that really matters. They will be back in a few hours anyway it’s nothing to really worry about. It’s more annoying than anything. I just wish I wasn’t so disabled sometimes.

It’s funny how quickly your feelings can change based on what happens around you. For me, my entire self-worth can be called into question because I drop something on the floor.

If it’s on the floor, it might as well be lost if I’ve lost it it’s probably on the floor. Is a variation of something I’ve said a lot. It just happens it, it is life. But when you can’t fix it yourself, it is frustrating.

Doing what you can.

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I think when you need a lot of help from those around you, being able to help them can be something even more important to you than most. I don’t really want to say it feels like like paying them back, because that suggests that you should have to pay those that helped you back for that help, and of course you shouldn’t. But if I’m honest with myself, it does feel like that.

So when I’m able to help someone, I push myself to do that more than I should, and perhaps more than most would. Sometimes doing this can be to my own detriment, as was the case yesterday.

We ended up having to get a taxi part of the journey home from the concert on Tuesday. While this was in part due to public transport ending before the concert had finished. It was over a distance that I would normally be able to travel in my chair. But because of things I had done earlier that day and having thought far enough into the future, I ended up with very little battery in my wheelchair and would not have been able to make the journey.

Earlier in the day I had ran errands for a family member whose car had broken and needed things picking up. This person is not able to travel without their car as they are unable to walk long distance.

It’s a learning experience when you’ve always been disabled watching those around you become disabled. Watching how they react to it all, how they adjust to their new normal. And sometimes unfortunately how they give themselves to grace they never gave you.

But not to dwell on that. Here was something I could do for someone who has done a lot of things for me regularly in my life. I just didn’t think through the consequences of helping them.

That is honestly a really frustrating part of being disabled, when others need your help, you still have to consider what you are able to do within the capabilities of your condition and situations. Sometimes this means you are not able to do everything you want to be able to do for them. It’s one thing to let yourself down, it feels so much harder to let other people down.

So I was going to do what I could despite what it cost me. And in all honesty I didn’t even realise until it was too late. But it’s not the end of the world, I got home okay and had a great night. And I managed to help someone, so that felt good too.

I just wish that wheelchairs could be charged using USB from a powerbank. That would honestly be the most helpful solution so my wheelchair is never able to limit my independence due to its charge Maybe one day it will be possible. 

Lets talk about teeth.

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This isn’t something I like to talk about, but I guess here is the place that I do that.

Brushing my teeth is always something I’ve struggled with, it’d physically difficult for me to do, but I realised recently that it’s more than that.

Partly to blame I think is the fact that regularly brushing my teeth wasn’t something instilled in me in my childhood. It now feels like something extra in my day to be done, rather than something to be done as part of my day.

But I think the biggest issue if I’m honest is the fact I need help with it. At the very least I need someone to get me the toothbrush, toothpaste and some water. Needing help is strange to me, it’s not as if it’s new, but certain things are difficult for me to ask for help with. Even though I know logically that it shouldn’t be, that I should be used to asking for things that I have to do it so much. But sometimes they just look tired or busy and I don’t want to ask, even though I know I can and I should.

If I could do it myself I think it would be easier to convince myself to do it. But I can’t at that makes it harder, in the physical and emotional sense.

I guess you can’t choose what’s emotionally difficult about life.

Lost and not found.

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I know I’ve written about this one before but it’s really bugging me again. And in true deflecting me style it’s not even the biggest problem I have to deal with now but we’re going with it anyway.

I think I’ve lost a bottle of pee.

Now in my house that’s not as stranger sentence as it might seem. Given I use a catheter to empty my bladder into a plastic bottle. I have been known to loose said bottle of pee in different areas, both in and outside the house. Now this post is less about the hottie of pee and more about the fact that I’m unable to look for it myself.

Now because I can’t look for this myself I always feel like it hasn’t been looked for properly. Years of mistrust slowly creeping there. And there’s very little I’m able to do about the entire situation, that in itself is the most frustrating part. If I could look myself, I didn’t find it, I know I would’ve tried my hardest. I can’t know that for certain of other people.

Being disabled as essentially having trust people throughout your life, at least for me. You don’t get a choice about needing their help, and you need it whether you trust them or not.