My care changed again.

So I got moved to a different run with my carers meaning the main carers I have will change. On the positive side the one that it’s changing to are actually able to come early in the morning. On the down side I had a really good relationship with the carers that I’m loosing.

One of the new carers is also someone I know outside of care, which was bound to happen, but is a first for me.

It can be a little disconcerting when my care changes without me knowing about it. Consistency isn’t something you get with care companies. Even when you do it can change at the drop of a hat. And as always, you dont get a say in it.

Choice is often conditional when disabled, if at all you have it.

But hopefully, with the better timings that these carers can do, it’ll all work out in the end. I am hopeful that by getting up earlier doing what I want with my life, will become more accessible to me.

Procrastination and little things

What may or may not be clear from my posts is that I don’t normally consider the title for them, but in this case I did. Writing this post is definitely me procrastinating writing the things I should be writing. But maybe just maybe writing this post will aid me in the writing I should be doing, but I guess we will find out once this post is finished and I get back to it. It’s funny how when you can’t write about one thing you are able to write about others, but this I suppose isn’t really relevant right now and may just all be part of my procrastination.

So, we had a moment this evening with what we think was a moth in a room and I told my sister to open my windows to see if it would leave, and I’m telling myself that it did. But anyway, as my sister was opening my bedroom windows that barely get opened, mostly because I’m afraid that we will forget we’ve opened them and leave the house unsecure, but anyway the point being one of them stuck. So, I thought my sister should try the rest of the windows in the house to make sure they also still opened, and one of them didn’t. It’s obviously not that important, as we don’t open the windows, but it is frustrating.

It is one of those frustrating things that I will probably get over at some point in the future, as I often have to do with the things that frustrate me, but it will just take some time.

What frustrates me more than the fact that there’s a problem with something in my house, is that there is a problem with something in my house that I am unable to fix myself. So really more than the frustration at the problem, the issue is the frustration at my own uselessness with the problem.

I feel this very often upset at the things I can’t do. Most people would probably assume that I have gotten used to things I can’t do in life, given the fact that I have not been able to do them since birth, that I have never been able to do them. That idea that you can’t miss what you never had. From my experience this is not true, not true at all. It simply something people tell other people who are struggling with these feelings, a platitude to make the ‘friend’ in the situation feel like they have had some input, like they have solved the problem somehow.

I definitely miss many things I have never had.

Even though I know that there is no point in me feeling this way, I simply do. Knowing that feeling the way you do is only hurting you, is not enough to help you stop feeling that way.

Of all the things I am unable to do, it is not being able to do the little things in life, to solve the minor problems, that cause me the most emotional stress.

I see people online who feel sorry for disabled people not being able to do what they seem to consider the most important things in life, like walking or having sex. Though the sex one I may not get because I’m Asexual rather than disabled, but still people have felt sorry for me as a disabled person presuming, I believe myself unable to have sex, rather than someone who does not want to. I could honestly write a whole post on Asexuality and Disability, or at least my experiences of it, but we’ll leave it there for now.  

The point I am trying to make is: It does not bother me that I cannot walk, it does bother me that I can’t open a stuck window.

Not being able to do the little things in life is a real emotional struggle for me, and probably will be for the rest of my life. I guess it’s just something that I will have to try to deal with, or at least cope with.

Anyway, for now I’m going to try to get back to the writing I should be doing. Wish me luck with it, I think I need it.

I lost something

I have very limited control in my life, therefore the control I have is very important to me.

This translates into a few different areas into my life.

One area is the files on my computer. This makes sense when you realise that I can put everything where I want and in whatever way I want. There is no way my files will never not be accessible to me.

I think this is part of the reason I got so upset when I lost a file the other day, which I still haven’t found. It’s because I feel like I’ve lost control in an area where I had control, and that’s scary.

The file isn’t even that important, and I’m working on getting a replacement for it.

So this one’s to say don’t judge what other people find important because you don’t know why it is that they find it important.

It’s not a lie in if I don’t ask for it.

My carers were two hours late this morning. This is an improvement on the previous day when they were three hours late. However, when they arrived they said that they let me lie in.

I’m just going to say this again. It’s not a lie in if I don’t ask for it. You’re not doing me a favour for being late.

Luckily today I do not have plans but next Saturday I do. It’s not up to you to decide what I want or what’s best for me.

I don’t understand why it’s so hard for people to do their jobs. And when they don’t they make the life I’ve built around me inaccessible. Most people aren’t going to care that I couldn’t be there because the cares decided to let me lie in. You’re not doing me a favour.

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.

I have to get up at 7am

What time do you go to bed and wake up currently?

Due to my carers, I have to get up at 7 am and go to bed at 8 pm. This is to ensure I am up early enough on important days. It’s difficult to have them come early when necessary if they don’t come early all the time.

I usually do get to go back to sleep in my chair afterwards though, so I don’t consider 7 am as the time that I get up if I go back to sleep.

As for the 8pm call, again I rarely go to sleep then, before 12am is considered an early night for me. But 8pm was the latest call time I was able to get. It used to be 7pm not that long ago. I know it sounds cool getting to go to bed early, but I promise you it’s completely different when you don’t get a day in it, when you are stuck in bed once you’re in it and it’s the same every day. It’s annoying to say the least.