My sister, who I’ve written about here before but tried to be vague with, has moved out. She was my carer but is now pregnant and therefore can no longer do that. In order for the flat to be accessible to me it is also cannot be made safe for a baby, so she had to leave.
It’s been complicated, but I would be lying if I said I wasn’t relived that I am alone now. Which is weird because I didn’t expect this level of relief, if I’m honest. I thought I would be more anxious. But instead I feel good. And the house isn’t even completely mine yet. I’m looking forward to how I’ll feel when it is.
I haven’t decided yet whether I’ll post this one do you know or it’ll stay in my drafts. I guess if you’re reading this I’ve made my decision.
I love my dogs. I love dogs in general. But as I’m sure every dog parent will tell you, and they would be right, my dogs are special. But the thing is I can’t do everything that my doggy needs me to do for them because of my disability, and sometimes I feel guilty. Guilty that I can’t be the parent they deserve.
But the thing about dogs is they love you anyway, you do the best for them and that’s always enough for them.
Thank you girls. For making me a mum. For making me enough. I love you.
At least that’s what I said even though it wasn’t really what I wanted. What I actually wanted wasn’t even food, but a lot of the time I don’t feel like the things I want are important enough for me to ask for. \
What I really wanted was for my little girls polar bear teddy to be moved so that it sits over her urn correctly. I don’t think really that’s too much for me to ask for, but I know that the person helping me will think that it is. So I felt I had to make up something more acceptable that I needed there help with, like the fact I wanted some chocolate.
That is one thing I’ve learnt after having a lifetime of help from others, people will judge you for the things you need help with. They might still do the things you ask them to do but they will be very strange about it, and if you ask for to many things that fall into the category, they will simply choose not to help you anymore.
When you need a lot of help from others, you have to have your life run by them. It all ultimately comes down to what they will actually do for you, if they say no, then you are stuck.
I don’t think people really understand what that is like until it happens to them. It is really hard to grasp what it is really like to have everything in your life controlled, and as a result at least in some way judged by other people.
It’s difficult to believe I have a right to have a say in anything in my life, when I know anything ultimately comes down to others. That is why I struggle when people ask me what I want in any situations, because it just feels like that ultimately doesn’t matter.
Anyway, as for now I have the chocolate, so I’m going to eat some now at least.
One part of being disabled that people don’t talk about is the fact you have to be around people that you really don’t want to be around.
There’s no, I don’t want people like that in my life, when you need that person in your life. Cutting them off puts me in danger.
I’m not really a people person, but I’m forced to be a person that is always around people. I’m always waiting on people, waiting on them to do everything for me. To get me up in the morning, someone to make me food, to get me a drink.
And I’m supposed to be grateful. Always. It can never be to much that they’re helping me, while something I need at the same time. That just doesn’t make sense to people, when I’m getting the help I should be grateful, always.
The minute I’m questioning how they do it, asking for something some a specific way, or just having a bad and seem off when being helped. I’m not being grateful.
I hate being disabled sometimes. I categorically hate it. It’s a visceral anger that I don’t know what to do with.
I realise recently that it mostly correlates with when I am placed in situations where I feel like a burden for reliant on others. Like I can’t change anything else, but I can be mad at myself for being in that situation. And at least that’s something, even if I know it’s not healthy. And unfortunately the person who I am heavily reliant on has an annoying habit of making me feel this way.
This leads to me feeling so broken for ever needing help, like I’m the worst person in this persons world, there biggest inconvenience. And they’re treating me like I forced them into a situation that they agreed to live in.
It’s not my disability that makes me feel like a burden. It’s always others.
I think the hardest part of grief for me has been the realisation that I’m still disabled throughout it. I hate to make this all about me, in fact I try to make it not about me whenever possible. But I find myself spending a lot of time hurting over the fact that I can’t mourn those I love in the way that I want to.
I know I’ve written about control before, but a lot of my life feels out of control right now, and the little things are really throwing me.
I just really want to be able to make my own decisions in my life but that’s not something you’re able to do when you’re disabled.
All I really want is not to have strangers in my house, and yet they are, whether I like it or not. I don’t have control of what happens in my own home or life. It’s getting harder and I’m trying to be big about it, because it’s Christmas and in all honesty I have to be the bigger person here. But it’s so hard.
I just want my space. I just want control. I just want not to be disabled in my own space.
So first I want to apologies for my absence. It feels weird to continue life after losing someone close but life continues to go on whether you like it or not, so I’m trying to get back into this.
So the person who I live with is pregnant, and they are looking at moving out. So that leaves me at least eventually when they can find somewhere to live, living alone. And while there is no time scale on when this will happen, I’m still trying to plan for when it will happen. For whatever living independently is going to look like for me.
But living independently for me also means living with a dog, I can’t imagine my life without my babies. But one of my carers is very concerned about my ability to manage and in all honesty it’s getting on my nerves now. I’ve not even started trying and she’s already expecting me to fail because I’m disabled, I just don’t think that’s fair.
Sure it’ll take some working out, but I can do this. And I’ve got time to work it out. The only problem I can see is that she sometimes goes to the bathroom in the kitchen in the night. This is something I can clean up once I’m up, but obviously I won’t be up until the first time the cares have been in the morning. And if it really bothers them they can get stuff ready including water the night before, the bathroom is through the kitchen, so they won’t have to go through the kitchen until I’ve had the chance to clean everything.
I literally cannot think of another issue with having her that I can’t solve.
Any anything that might be a little more difficult is just worth it to have her, to live with her, to have my baby.
I deserve comfort and love. And a chance to live my own version of independence and for me that includes living with a dog. I don’t think that’s unfair, even if she sometimes goes in the house. It’s not like I have no way of cleaning it at all or I’m asking them to do it.
Anyway I have time to sort this. I just wish people would leave me to my business, and at least let me try before they’ve decided I’ve failed.
There’s a lot of change in my life lately, none of which I have been able to have a say in. And it’s very annoying to have people judge how I’m dealing with it all, when I’m just trying to do my best.
Image Description: A picture left to right of my yellow Labrador, brown and white caviler King Charles and grey cat all lying or sitting on my bed on a blue blanket. Behind them is two asexual flags on the wall.
I’m actually sat here writing this post to avoid replying to the email just that little bit more. That’s how much I really don’t want to do it.
It’s a response to a previous email about something called Disability Related Expenses, which is essentially extra payments I have to make because of my disability. It’s part of what I and other disabled people have referred to as the disability tax, but it’s a lot more official. And I really have to prove everything I say, in order to get my payments towards my care lowered.
While I abstractly understand why I have to prove these costs, because I simply can’t just claim I pay for something that I don’t. In practice it’s something I hate doing.
Proving my disability just makes me feel very disabled. It makes me feel judged. Like they think I’m lying in some way that I know I’m absolutely not lying. Like they’re waiting for who I am to trip me up. To judge whether I’m disabled enough to not have to pay for care that I obviously need.
And really that’s the hard part, the fact this is all about a payment for something I need but don’t want. And as someone who doesn’t earn, it’s not something I think I should have to pay for in any way. But yet I do.
I need to write this email. I need to get it done. I just really really do not want to.
Society really is the worst part about me being disabled.
My Inaccessible Life 