Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Problems you only have when both you and your dog are incontinent, I couldn’t work out which one of us had wet the bed.
Sometimes you have to laugh at a situation. Even though I’m going to be stuck in this wet bed until the morning. She’s my baby girl and I wouldn’t change her for the world.
This weekend my neighbours are having a party. Everyone was invited apart from me. It was just assumed I wouldn’t want to go.
Attending things with other people can be so difficult that I don’t actually know if it’s just better to not be invited sometimes. I don’t think I’m able to make a fair decision about whether I would or wouldn’t want to go to these kinds of events. Simply because of how awkward it would be for me to attend. It’s not a fair decision if it’s bias.
I just wish I’d be able to do things with those around me without it being an issue. Without the idea that maybe it’s better that I wasn’t invited, maybe being right.
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.
So tonight I’m going to another concert, and when you do this as a wheelchair user it always comes with a level of anxiety, especially when I go to a new venue.
Concerts are an odd experience for me, the music can help me feel free and part of a group, while the environment can make me feel more disabled than any other environment. It’s always hit and miss.
This is a concert I’ve been to before, and last time it was amazing, but my experience was helped massively by the venue. By the fact I could go in the crowd with everyone else, and be near the front.
The last thing I want is to be at the back, I’d rather be in the crowd and unable to see, rather than in some special area. In the past I’ve been in this area and unable to see anyway. The area isn’t really about me being safe, it’s about protecting the venue from being sued in anyway and I hate being in it.
But this time I know in advance that I will have to be in it, which I’ll admit it is better than not knowing. However it’s still causing me a great deal of anxiety. I’m hoping the experience will be worth the stress that venues place on me because of my disability. But this isn’t something I will know until I get there, but I can live in hope for a good experience right.
Wish me look.
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 after being out all day yesterday, the person I live with seemed surprise that I told them I would be okay to handle what we’d being doing today on my own if they wanted to stay home and sleep.
To make it clear I won’t really be on my own for a lot of the day, but because they won’t be with me for all of it, for part of the day I would be on my own. Specifically while we get to the place where we’d be meeting family.
This is a well practiced route that I do almost every Monday, when we go for a family breakfast, so I’d be fine. In some ways it’s actually easier for me to be out of the house on my own than in the house on my own. My house is just that inaccessible in parts to me. But still they seemed surprised that I’d be okay to handle this on my own.
I think it’s easy to forget when you see how much help I need on a regular basis that I don’t need help for everything. That although some things are easier for me to get help with, it doesn’t mean I couldn’t manage them alone.
Interestingly as I write this I had to call for help, but remember what I said about my house not being that accessible to me? Blame the environment for that one.
Anyway, the way they said this was like they expected me not to go if they weren’t going, and honestly that annoyed me maybe more than it should. Like I said this is something we do every week, and a few times I’ve been too tired to go, but I’ve never expected them not to go because I wouldn’t be. It’s like they forget I am an adult that can do things without them. Maybe they do? Maybe everyone does? Maybe I do? I don’t know.
There’s something else I want to add about this weekly get-together. It started years ago, and initially, it wasn’t something I was invited to, which really upset me, and on some level, I think it still does. When I questioned why I wasn’t invited, I was told they just didn’t think I wanted to go. And I don’t know if they genuinely believe that, or if it’s just what they tell themselves to make themselves not feel guilty, or which answer to that is worse.
I personally think they decided that it would be too difficult for me to get there, and so decided just not to invite me. I never questioned it because for a while I didn’t actually know it was happening. But this wouldn’t be the first time my family have done something like that. Made the decision for me about going somewhere or doing something, and so never asked me about it. They once went to a theme park when they knew I wouldn’t be home.
This isn’t something I can bring up with them, as it will definitely start more drama than it is worth. I doubt they even remember what they did. But I do. I remember the exclusion, feeling like I was too much to be included even by my own family. That’s something that I still struggle with now. I often say I don’t want to do things, if I think having me involved will make things more difficult for others. It’s not only my family that have excluded me in this way throughout my life, but it definitely hurts worse when it comes from them.
But back to today, I will be going to the family breakfast, whether or not I have to get there or back to my dad’s on my own. It will be happening. I deserve to be involved in things, I deserve to be involved in this family. And this is how I want to be involved. Plus, I really like being able to have chips for breakfast.
Just remember that if you’re reading this, know that you deserve the same from your own family whether or not they make you feel that way. You deserve to be part of the gathering, part of the memory, part of it all. And if they exclude you, it is always a choice, there could’ve always been a way to include you. That is a decision they made, it is on them not you
Sometimes I get fixated on damage in my home or dirt I can’t clean or something like that. The only way I’ve found to distract myself from it when something new happens, is to go through the old marks and damage in my head so I feel better about the new thing being less important.
Currently it’s orange juice that I may or may not have spilled on the floor. I can’t actually tell from where I am. I’m reminding myself it’s not as bad as the marks on the wall.
This is the part of disability that you might not even consider. When someone is stuck in one position in the room.
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.
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.
My Inaccessible Life 