Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
When the wheelchair accessibility of a venue is so rubbish but they won’t let me leave without making my carer leave to who likes who we were supposed to see as well so you end up sitting in the corner watching How I Met Your Mother. This is why I go everywhere prepared to sit alone in the corner 😂😢
Make of this what you will. May or may not explain more later.
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.
And I really don’t want to.
I’m sat here in what I call my comfy chair thinking about the fact that I am comfortable, and in about an hour I’m going to be a lot less comfortable.
When you’re disabled, you often have to do things on other peoples schedule. Which means I have to have a shower or at the very least get into bed in an hour whether I want to or not. Now this is strictly true because I can say if I want to both of them.  but if I was having a shower today, I can’t have one until Tuesday. And if I say no to getting in bed it also means I’m saying no to getting changed. This means I will be uncomfortable and dirty by the time the 12 hours have passed and I’m able to get that care again.
So I don’t really see it as a choice, when the decision is so stacked against me. Do it later, doesn’t really exist for me, and on days like today that can be incredibly frustrating.
I just don’t want to move. But I know I’ll have to soon.
So today I’m set up to be on my own all day. I have my coffee and my hot plate, which I’m counting as an accessibility aid, and should really do a post on. But I have everything I need. I think.
And that “I think” is the real concern. I have to think not only about the things I need in the moment, but I anything I may need for the rest of the day while I’m on my own. And I don’t always get it right, I usually forget something. I forgot my fan today, but that’s nothing major.
You have to be more organised when you’re disabled. You just do. You have to try and think ahead about the immediate future all of the time. You’re the one that suffers if you’re not organised enough.
I’m far more organised that people might realised, it’s just organised chaos, to be honest with you. I’ve set things up so they work for me, even if it looks complicated for you. And because I’m not set up as far in advance as some they may not realise just how organised I am.
Today is just about being ready for today, and that’s enough for me.
I know I’ve posted about not being able to be on my own, but today is a day where it wouldn’t be fair to the person I live with to not be on my own today. They wouldn’t be able to do what they wanted to, and I really don’t want to stop them living their life.
Sometimes me being alone is about other people, and it’s just a risk I have to take.
Needing carers sucks.
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.
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.
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.
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 life is a job for other people, and I understand I’m struggling with the reality of that right now.
I’m tired of other people thinking they get to judge how I live. But unfortunately, they do. That’s what happens when you need help. People get a saying in your life places they shouldn’t get. It’s not fair.
I really don’t want to deal with this. part of me attempted just to not answer the phone when it rings next. So that maybe I never have to deal with this.
I really wish people making these decisions, the people judging my life, understood what it felt like to have a random strangers do that to them.
This is making me not want to do anything, to never leave my room. But I still have things to do, because whether they like it or not, I still have a life.
I’m so tired of this. I’m tired of being disabled. Tired of being judged for being disabled. I’m just tired.
My Inaccessible Life 