Tonight I’m going to a family party, I have mixed feelings about this for a varsity of reasons.
It’s going to involve me spending the night in my wheelchair and I’m honestly not looking forward to that. But I swear it feels like my body knows I’ll be doing that. My legs are hurting already, and I’m not even in my chair yet.
I’m also hoping that I can poo within the next hour, because if I don’t anything I do after that I’ll be stuck in for more than 24 hours. The joys of incontinence.
The next 24 hours of my life, are going to be as uncomfortable and rough as they are fun.
I’ve got to use ramps that scare me, sleep in my wheelchair, where the same clothes. And I know I’m going to be in my pain.
Just because something will be worth it, doesn’t mean its going to be easy.
Part of me can’t wait to come home to my girls honestly, and I haven’t even left yet.
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.
My sister just drove my chair into my bed which then hit my wall because my bed is also on wheels. A wall that is very poorly painted as I live in a council house. A wall which is damaged again.
It keeps happening.
The price of living in a wheelchair in a flat not properly designed for someone in a wheelchair is constant damage of the building in various ways. I know this. I’ve been a wheelchair user my whole life. And yet it still frustrates me.
I will get over the damage I know I will, I always do. I know that it’s not really important. But right now I’m angry with myself for being disabled. All I can think is this damage wouldn’t be happening if I wasn’t disabled. The internalised ableism is winning.
But I know in reality that the problem is the inaccessibility of housing for people in wheelchairs like myself. That without a lot of money, housing will always be inaccessible to me and I will always end up damaging it in one way or another.
I just wish it didn’t upset me every time. When I know it’s an inevitability I can do nothing about.
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.
This one’s going to make it seem like I’m a horrible person, and maybe somewhere I am. But I need to do something with these feelings so here goes.
I doubt I’m unique in feeling this, I doubt any emotions are really unique. But perhaps I’m the only one willing to say that I feel this way.
As someone whose existence has taken many opportunities from them, watching others mess up the opportunities that they have is hard. Not least because I know that I will never have those opportunities myself.
I know what people say, that it’s easier to see how things are done from the outside, and think you can do it better. And while I don’t disagree with this, that a lot of my confidence may actually just be ignorance of the difficulties others go through. But there are certain situations that I think it’s not novae to say I’d do better in.
The irony is I think I’d only do better, because I understand the steps involved. And I only understand the steps involved now because I am on the ouside of the situation right now.
One example to try to explain what I’m talking about, would be to consider those who loose things or have important things become damaged. I think that I’d be better placed for this not to happen if I were physically able to do so, but only because I have thought about it at length. And I have only thought about it at length because I lack the physical capability to do it. I hope this makes sense.
Maybe this post is simply me dealing with my ignorance and emotions. Maybe I really wouldn’t be able to handle situations as well as I think I could. But the truth is as I will never find in myself in the situation where I will be in complete control of such a situation, I will never know if I will be any good at it or not.
Trust me when I say this example is an incredibly simple one. This can be applied to more complex and life altering situations than not loosing something.
My frustration at never getting to try certain things, and watching those that get the opportunity to do so, sometimes feels never ending.
And I know that it’s judgemental of me to think this way. I would never put this on anyone I know, because that’s just not fair. I am also very aware that people are trying there best. But I still can’t escape feeling this way.
I’m sorry to anyone I upset with the post. That was not my intention.
It’s makes perfect sense that everyone needs a break from things. But sometimes it’s difficult to know that you’re the thing that someone needs a break from.
Logically I obviously know this, but sometimes it can feel like you’re the problem for being something they need a break from.
I just wish I wasn’t the person people needed a break from. I wish I wasn’t that complicated for others to deal with. I wish I could just exist in the world without needing others. But it is the way it is. And I’m always going to need people. I just need to accept that and try to remember that that’s not my fault.
I’m not trying to make this about me, I’m trust trying to deal with the emotions of this so my emotions don’t affect them.
So today I was supposed to go and see a friend of mine. And I had an appointment this morning. After the appointment I did everything that I needed to, I walked my doggies.
But then it came to the thing of seeing my friend and I just honestly didn’t want to leave the house again.
I know that sounds bad. I feel bad for it. But the thought of going outside is just so much worse.
And I’d said I’d go, so I should go. But I just really don’t want to.
I know that makes me a horrible person.
But outside is cold.
And I would rather be on my own in the warm than go out in the cold to be with someone.
This was the post I planned to write today, but as it is supposed to do, I suppose today’s daily prompt had me writing about screen time before I started this post. But never mind that let’s get into this one.
If it wasn’t obvious by my opening. Paragraph I am actually avoiding writing about this, due to it, still being emotionally raw and complex for me to deal with. However, I think this is something that I don’t write about now I have the time and space to do so. I probably won’t end up writing about it. And this is something that I think it is important to share and needs to be spoken about, or in my case written about more. All this to say just bear with me on this one.
As I write this, I’m sat alone with my babies because my sister is at a concert. Yesterday I was at the concert well at this concert, I posted the TikTok below.
Video Description: The video shows the view from a balcony at the back of a concert. The text “ Quick question, how would you feel if this was your seat when you arrived 3+ hours to a venue and were literally the first people here?”
This video is shows where I had to sit for the concert I was at yesterday. Despite arriving to it several hours early and before any other noticeable members of the crowd arrived.
I believed for this concert that I would be able to be near the front, as I am able to be in very similar venues. However, this clearly wasn’t the case and to be completely honest I was very upset about this.
It is often the case in venues that I have to go out the back door, accessibility reasons, but I honestly believe this is just because they don’t want to be sued. I really don’t want to be at the back of venue for a concert. This generally makes me very upset and reminds me that I’m disabled. It’s one of the few things that I really hate as a disabled. I would much rather be in the crowd, even if that meant I couldn’t see. I just want to be part of it. But apparently that’s too much to ask in most venues.
I think it should be the disabled person’s choice as to whether they go in a segregated area if there is one available at the venue. I do not think they should be forced to do this. Don’t get me wrong, I understand why this segregated area exists for some people as they probably feel more comfortable than they would if they were in the main crowd. my problem isn’t with its existence, but with its enforcement.
I love music. I love live music. I love concerts. I hate being segregated.
The segregated platform seems to be something that non-disabled people think disabled people need, and I very much doubt they have asked disabled people this. They certainly didn’t ask me.
It is segregation, not necessary treatment, to force people to go into a different area just because of who they are. If I phrase accessibility platforms like this, it doesn’t sound very fair does it? How would you like it if you thought you were going to have a good view and then had to go out the back, simply because of who you are, at every concert.
As I’ve said, I really don’t believe this is for my own safety, I believe it’s to stop venues getting sued by disabled people, and perhaps non-disabled people where they somehow to be injured by the disabled person.
I believe there should be some sort of waiver that the disabled person is able to sign to say they want to go in the general area, and then they should be allowed to go in the general area like everybody else. Perhaps an additional clause in the terms and condition of general sale tickets to prevent suing a venue if a person becomes injured while in a crowd should be added to the general sale tickets. In my opinion, something needs to be done so I and others that want to experience the way they want to.
Making me go out the back leaves me emotionally conflicted throughout the concert and honestly taints, the memories I have of it. That said I am not about to let this stop me going to concerts, I just wish my experience was different. To be honest honest, I just wish I wasn’t disabled when I’m at some concerts. Which when you, think about it is really sad
I apologise if this post isn’t clear or well thought out as I said, I’m still very emotionally triggered by this.
Disclaimer this post was written using voice to text. Please alert me of any mistakes that make the content unclear and I will fix them as soon as possible.
What’s something most people don’t know about you?
I make it work. But it’s hard.
We’ve reached this part of acceptance of disability in society that it seems like if you’re disabled you’re not able to struggle with it.
Now this isn’t the case if you become disabled later in life, people seem to be able to deal with the idea of change being difficult. But having always been disabled this is not something people know how to deal with me struggling with.
I’ve not known anything different, so what do I have to complain about. This is something I’ve both been told and told myself.
My response to someone’s Facebook post in a CNBC group that I’m in. I became really emotive while writing it and I thought maybe I’d share it with you all.
I know where you’re coming from I think. The idea that people thing any life is obtainable because you don’t have children is so deeply untrue. I’m disabled and poor. The entire world is built against people like me. Less than 100 years ago. I’d have been left for dead. So no I can’t just live my best life without kids. But even if that were possible, even if everything else lined up in the world to allow me to do that, none of it makes that the life I wanted. Any life I live, even if it one day becomes a good life, even if by comparison to others it is already a good life. Will never be the life I dreamed of, the life I wanted to lead. And there’s an element of grief involved in that. Feelings that need to be felt. Feelings that go without respect. Because at least you can…. No. I can’t. And thank you very much for just pointing out something else unreachable.
This is your reminder, and my reminder of a few important feelings. It’s okay to grief the life you wanted, it’s okay to have bad days where that’s all you can think about. Feeling how you feel doesn’t undo the good going on in your life now. Find ways to let it out. You deserve to be allowed to grieve, just like everyone else. You don’t need to be happy all of the time just because the rest of the world wants you to be. Your happiness is not something that exists to make everybody else feel better about their own life. Your happiness and your emotions are about you and no one else.
My Inaccessible Life 