To my phone. 

Where would you go on a shopping spree?

I know that online shopping has its criticisms, but for me it’s the most accessible form of shopping.

It’s a type of shopping I am able to do on my own. I can by whatever I want, with in my budget,  and have it delivered to my house.

I can manage in a standard shop, but there are usually some points I’m forced to ask for help. And I’ve worked on that to the point where my anxiety doesn’t stop me doing it anymore. But it doesn’t mean that I like to ask for help. So ways to avoid it are always good.

I’ve had a lot going on.

Don’t we all?

But this is what I told someone who I saw today, that I haven’t seen in over a year when they asked me what I was doing.

I feel ashamed that I don’t have a job or am no longer studying. Neither of those things are for lack of trying, but I still feel guilty for it. I don’t feel like I have the emotional energy to continue to apply for further study, I tried and failed. I failed because they don’t want me not because I’m not qualified, and I feel like there’s nothing I can do about that. I could reapply for the position, but I’m struggling to believe that I’ll get on it now, so I don’t want to apply.

I was having a good day until this point, until this one thing threw me off. Until it made me feel like I’ve never achieved anything.

But I have done things, harder things than many people would have to do. They just don’t think they’re hard. And I need to remind myself of that.

Be proud of how far you’ve come

I just got back doing some adulting errands on my own. While out I asked for help from strangers and dealt with things not being as expected. I did this without a lot of anxiety; avoiding doing it for a long time or not getting something I wanted from the shop.

I know this might seem minor but the me from not that long ago would have really struggled with this today.

Remember to Be proud of yourself for doing the things that were once difficult, even if they felt easy to do at the time. Especially if they felt easy at the time. Younger you is smiling, you should to.

Is it wrong to always believe I’m right?

The other day, one of my carers said, I always believe I’m right, and she is right most of the time I do believe I am right, especially when it comes to things about my personal care, physical, well-being and health. Don’t get me wrong, I will take on the advice of others, but generally I believe I know what I’m doing with my own body.

The way this carer phrased it was as if this was a bad thing, I don’t think it was. She tried to say that she’s been a career for a long time and that means that she knew me doing something a certain way would be best. I told her that I have been disabled for a long time and I know how my body works.

While this conversation made me uncomfortable I don’t think I’m wrong to say I know best for me. While they may know certain things about caring in general, they don’t know my personal situation better than I do.

I really don’t think it’s bad that I trust myself enough to think I’m right a lot of the time. In fact I think that it’s very important that I believe in myself enough to know that I am right about things. There was a time when I didn’t have anywhere near enough confidence in myself to believe in myself. It took time to trust I was right, and I don’t want to feel bad about it.

Honestly I think carers need to remember that caring for people doesn’t give them the same experience as living with a condition. It might not be my job, but it is my life.

Nice carers aren’t always easy.

What you’ll see as me becoming rude is actually me finding the confidence to stand up for myself. It took months of me just putting up with things to get to that point.

When I get a new company, like I have recently its like starting over again with the confidence I had.

It’s hard I don’t want to be rude but i don’t want to be in my bed at 11am.

I feel like control over my life is suddenly inaccessible to me yet again. I know what I need to do to fix it, it’s just a lot harder to actually do it.

This is a complicated and interesting question.

Are you seeking security or adventure?

I’ve always said my body and my brain don’t agree with each other. I think my brain wants adventure and my body wants security. I want to be able to live an exciting life. But it’s so complicated, when my body needs security. When I physically need security, to try to live a life of adventure.

It’s so difficult when I don’t even have security, and sometimes it’s like I have nothing. Security doesn’t exist and adventure is to dangerous. But I’m trying and I suppose that’s all I can do.

Why am I only just speaking out now.

Screen shot of a comment that says “where would you be then? Either quit moaning or find the funds and pay for private”

This comment was left on a Tiktok I did earlier today talking about my carers. And honestly this is the reason it’s taken me so long to speak out.

You should go to my Tiktok to see the context.

But basically this person is warning me that by speaking openly about my experiences with carers I risk loosing my carers. I don’t think I would as I’ve intentionally not mentioned them publicly and won’t do so. But this is a really cruel thing to say to someone reliant on others.

This is one of my biggest fears that has kept quiet for a long time. The fear that speaking out would end up risking my care. And honestly this comment has me worried a little.

Often as disabled people are support can feel condition, our access to the world can feel conditional. Like we can have it as long as the ables want us to be able to have it. And speaking out against something, is a sure fire way of stopping the ables wanting us having access to the world. But you see, we deserve it anyway. Our access and inclusion to the world shouldn’t be conditional on whether we are nice. No one else’s is.

So while this comment has me a little worried it won’t stop me though. I finally have the confidence to speak out. Stopping now isn’t an option.