Going out

So I’ve been invited to a family event and thankfully the place is fairly accessible. I’m quite happy with the gap in the bench at the table, and the ramps, but to be honest that’s about it. I can’t get myself a drink though, which is probably both equally a blessing and a curse.

Its still odd for me to be invited to things, I’m honestly not sure I’ll get used to it. Before coming here I contemplated not coming multiple times, I figured it would just be easier for everyone else and for me. But I’m glad I came, I think.

One day maybe I can go somewhere with people and not feel anxious that I’ll get in the way. Living in an inaccessible society, causes lasting emotional damage. I don’t think I’ll ever get used to being invited anywhere, to being wanted.

Even the friends I see regularly, I’m still surprised they want me around, but somehow they do. That the problems I cause are worth it for them.

Logically I know it’s not my fault that society is so inaccessible, but emotionally? It’s a struggle to remember that I am not the issue. That I deserve to be involved in things even if it’s difficult.

It’s okay to not feel like you belong, it’s not your fault. Just try not to let that stop you from doing something you want to. You deserve to have fun.

I swear my incontinence and disability are just spiteful.

Minutes after my carers left this morning I did something I have never done before, which accidentally caused my catheter to become unclamped soaking me in pee. But this had to happen on a day where I am going out tonight so have cancelled my evening call. This means that even though I have Febrezed my clothes, thank you mum for that little trick, I will technically have to be wearing damp clothes for something close to 18 hours.

It had to happen today didn’t it?

I just feel like what could already turn out to be a rubbish day, I’ve got concert tickets but not accessible ones, so they may just turn me away. Has had the worst start that it possible could.

This is why I almost always wear black. It’s not a fashion choice really, but something that hides the fact that things like this happen.

I hate it. All of this. It makes me feel like a child, and I kind of just want to cry about it and go back to bed. But I can’t do that as nothing can really be done about any of this. So if I decide to give up I’ll just be ruining the day for everyone else. So I’ve just got to pretend this didn’t happen, smile and move on.

Today already feels like to much, and I’ve not even been awake an hour.

I can’t be mad when I need help.

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.

It’s a bit much.

A bad experience at a concert can really through me, and that’s what happened last night.

If you want to know more specifics about the experience you can see the TikTok I made here. A poor inaccessible experience, and that’s putting it lightly, throws the entire image I have of myself as a disabled person into question.

It makes me wonder why I even try, if I’m just going to be treated like that. It makes me wonder why I even try. It makes me feel more disabled. 

It shows me without a doubt that it’s society that makes me disabled, and that makes me sad. It makes me sad because I know there’s nothing I can really do about the way they want to treat me.

I just want to enjoy a concert. I don’t understand why that’s to much to ask.

Access

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 😂😢

Image Description: picture of a clip from How I Met Your Mother on a phone, showing Lily and Marshall the captions read “there occurred a game-changing emergency.”

Make of this what you will. May or may not explain more later.

The little lies.

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 can do some things on my own.

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

Starting regular medication.

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’m working on it.

What fears have you overcome and how?

I have so many fears, that to be honest I can’t place just one that I have overcome.

I feel like working on them all is a lifelong task.

I’ve gotten better at speaking on the phone. At telling people how I feel. At saying no.

But to say I’ve overcome these fears would be to suggest they no longer scare me, wouldn’t it? And to be honest they do. I think they always will.

Maybe overcoming a fear is to learn to live with that fear and to not let it stop you, rather than never being afraid of something.

But I think it’s a process. Not a to do list.

When you’re not the one fixing the problem you don’t get to decide how the problem is fixed.

So my little girl was at the vet today. That went about as well as can be expected.

But the person I live with left the medication she was given in the car of the person who took them to and from the vet. As I’m in bed I can’t go and collect it, and they do not want to do so until the morning.

This massively frustrates me as I want to check the medication now, but as I know it doesn’t logically matter I haven’t said anything to them. I know they would go if I asked them to, but I don’t want to be the one to do that. It doesn’t seem fair to make them do something that isn’t that important just because I can’t do it myself.

But if it were up to me I would go and get the medication now. And I think what’s really bothering me is less the problem but more that I cannot fix it the way that I want to.

I can’t help thinking that if I wasn’t disabled I would be able to solve the problem myself. Even more I would have been able to take her to the vet myself, and I wouldn’t have lost the medication so there wouldn’t be a problem to solve. I think this is tired to how useful I feel as a parent to my pets, if I wasn’t disabled I could just be more use to them, show them my love better.

I know logically this isn’t true. And that this isn’t a really big problem, but it’s the little problems that seem to upset me the most.

I just have to keep reminding myself that tomorrow it won’t be a problem anymore.