Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
I’m just tired of it, of all the little things I have to sort out for someone else to do just because I can’t do it myself. And for having to pay for those things to be done.
I just wish I didn’t need so much help, I wish I could do what I want to when I want to. I wish I could be in control of my own life. Sometimes it really gets to me.
So do you ever have those moments where you are irrationally angry?
Well I do.
And obviously I should apologise, but because I need help I can’t do this on my own time. I hate having to ask for help when I’m upset. I hate that my disability just doesn’t go away. That whatever else happens it’s just there, and I still need help whether I like it or not.
I don’t get to deal with my emotions the way I want to. And I feel like that means that I don’t really get to deal with them at all.
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 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.
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.
What are the most important things needed to live a good life?
I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.
Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.
Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.
Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.
A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.
I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.
By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.
When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.
I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.
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’m currently waiting for the person I live with to get home. There is a chance they may not get home before my carers and I’m worried.
I’m torn, because I feel bad at them for ruining late at they know how important it is for them to be home for this time. But also I feel like because they care for me I’m not allowed to be mad when they do this.
What is it they say, don’t bite the hand that feeds you?
Well I never wanted to be fed, but I don’t want to starve.
My carers were off with me this morning. They complained about things I couldn’t change and it’s really gotten to me.
It’s got me spiralling a little bit about the things in my life that I cannot change. I didn’t choose to live in a house with a garden that I can’t look after, and yet I feel like they’re punishing me for it.
I can’t change my situation and I feel guilty for it.
I don’t want to be around so many judging people, and yet I am forced to be because of the help I need. And at the minute it’s really bugging me.
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.
My Inaccessible Life 