Tag: It’s Okay To Need Help

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.

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.

I couldn’t get in my chair today.

On By Katy DalyIn My Disability TruthLeave a comment

That’s sort of a lie. I was in it for maybe an hour? It just hurt to much.

There’s something not right with the cushion on the chair and it leaves the bar digging into my legs in a way that gives me pins and needles.

The immediate problem is fixable by getting out of my chair and moving the cushion forward. But there needs to be a bigger problem before I call and ask for help to fix the wider issue of the cushion moving. At least that’s what I tell myself, maybe I’m wrong and making myself suffer. I don’t know. Thanks anxiety. I just don’t feel like this is a big enlightened problem yet to get help with.

Today I just got out of my chair again, into my other chair, which to be honest has its own problems but at least doesn’t cause me as much pain.

I’m honestly tired of needing these mobility aids. Of the guilt I feel when they brake and needing help to fix them. But this is me for the rest of my life and I know that I have to accept that, it’s just hard.

I wish I didn’t need all this. I wish I could solve my own problems. To be honest I really wish I didn’t as much help as I do. Needing help consistently takes its toll. And I can’t just not have help for a while. I can’t have a brake from needling someone, from being disabled.

Nighttime.

On By Katy DalyIn BlogLeave a comment

I want to be alone a lot of the time, at least I think I do. But my disability means that the times when I’m alone are often the most debilitating for me.

Take now for example, as I write this post I’m lay in bed, and I find that one of my chargers isn’t working. I have other wires but they are not where I can reach them myself. And while I could wake the person I live with, and they wouldn’t mind, this is not something I deem important enough to wake them after 12 o’clock at night for.

In the past when I have had a problem, but not a serious enough problem, I have created bigger problems that I deem worthy of asking for help for. For example dropping my bed control, without which I am unable to move in the night, which causes so much pain that I am unable to sleep. But that isn’t something I will be doing tonight.

No matter how much I find myself wanting it, being alone reminds me what I am unable to do on my own, it reminds me just how disabled I am. Being alone for any long period of time is always going to inaccessible to me. And sometimes, like right now, it is difficult for me to accept that reality.

I wonder if I do you want to be alone or if I just want to be able to do things for myself? Or if what I really want, is others not to have to do the things for me. While all those things sound the same, I don’t think they are. Wanting to be able to do things for yourself and not wanting other people to do them for you or different. One is about independence the other is about being a burden to those around you.

But when you can never be alone for any meaningful length of time. When you always need the help of others to do the simplest things. You are always going to be a burden, or at the very least feel like you are a burden, in some way or another.

Maybe the reason I want to be alone is because I don’t want to feel like a burden to anyone. And when I’m alone I can’t ask for help, so I can’t bother anyone, so for a little while I’m not a burden.

Not being disabled will always be inaccessible to me. And that means the life of those who aren’t disabled, the life of true freedom and independence, will always be as well.

So why call this post nighttime?

Well, if it wasn’t obvious that tends to be when I am alone, the most thanks to my messed up sleeping pattern. I’ve heard it said before that nighttime is the worst for your emotions, as this is when they are free to control you. And honestly right now I would have to agree.

Nighttime is when I am alone. Nighttime is when I realise being alone is inaccessible to me. Nighttime is when I cannot sleep.

I hate dropping things.

On By Katy DalyIn My Disability TruthLeave a comment

I often drop lotto things on the floor that I can’t pick up myself. It bugs me and there’s nothing I can do about it. The person I live with doesn’t notice little things on the floor, so asking them if they can see anything on the floor isn’t a completely fool proof way to find out if there’s anything on the floor.

Relying on people is emotionally draining. Even when you know they’re trying their best. In fact I think when they’re trying their best it makes it worse, as you know you logically it’s not fair to be annoyed at them.

So I become annoyed at myself for being unable to solve my own problems and therefore relying on them.

I don’t cook much.

On By Katy DalyIn Writing PromptsLeave a comment

What’s your favorite thing to cook?

I love food. But I don’t cook.

I love potato, seasoning and spices. But I can’t cook.

So if you’re asking what my favourite thing to cook is, that’s almost a mute question.

But that doesn’t mean I don’t get to love food.

Remember you don’t have to be able to cook to enjoy food.

I don’t like needing help.

On By Katy DalyIn My Disability TruthLeave a comment

Given how much help I need on a day to day basis, you would think I’d be okay with asking for help. But in all honesty, I still struggle, even when I pay for it.

I have a cleaner come semi regularly, which I pay for. And I still don’t like needing their help, even though they agreed to it, and I pay them.

The only help I get that I’ve become somewhat comfortable with is that from my family or carers. And I think the only reason I’ve become okay with it is because I don’t have any other choice. That said there has been times I’ve injured and burnt myself, rather than ask my help

So this is your reminder that even even people have a lot of help, they may not be comfortable needing it. Regardless of how much help someone has or how long they’ve had it for. Asking for help can be big step for others.

Simple is relative.

On By Katy DalyIn Blog1 Comment

Sometimes the solution to a problem might seem simple, it might even be simple for you, but that doesn’t mean that it’s simple for everyone.

Yesterday I had a problem with my heating and I have a consistent problem with my dryer. Different people have told me that both these problems can be easily solved, and yet I have had to call someone in for them, because I am unable to fix the problem myself.

But maybe that counts as the easy solution, providing I suppose it solves the problems. Maybe me calling someone to solve the problem, is me solving the problem in a way that’s accessible to me.

Making something accessible doesn’t mean always doing it yourself.

That’s a lesson I learnt many years ago, but one I struggle to remember in the moment.

But in a world which is inheritantly ableist, many don’t count getting someone else to help you do something, as doing it for yourself. And I am someone who needs help to solve the simple problems in life often. So to me they are not simple problems.

But I do, I have to. Otherwise the rest of the world simply happens to me or around me, and I’m not part of it anymore.

There was a time when I wouldn’t have even asked for the help when I needed it, and just let a problem get worse. At least now I have a way to solve it.

So just remember, don’t judge anyone who needs help to get it done, at least the job gets done. We all need a little help sometimes.

The middle of the night.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.

As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.

I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.

Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.

Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.

I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.

But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.

I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.

I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.

I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.

It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.

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.