Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
I’m currently waiting for the person I live with to get home. There is a chance they may not get home before my carers and I’m worried.
I’m torn, because I feel bad at them for ruining late at they know how important it is for them to be home for this time. But also I feel like because they care for me I’m not allowed to be mad when they do this.
What is it they say, don’t bite the hand that feeds you?
Well I never wanted to be fed, but I don’t want to starve.
My life is a job for other people, and I understand I’m struggling with the reality of that right now.
I’m tired of other people thinking they get to judge how I live. But unfortunately, they do. That’s what happens when you need help. People get a saying in your life places they shouldn’t get. It’s not fair.
I really don’t want to deal with this. part of me attempted just to not answer the phone when it rings next. So that maybe I never have to deal with this.
I really wish people making these decisions, the people judging my life, understood what it felt like to have a random strangers do that to them.
This is making me not want to do anything, to never leave my room. But I still have things to do, because whether they like it or not, I still have a life.
I’m so tired of this. I’m tired of being disabled. Tired of being judged for being disabled. I’m just tired.
I feel like social services are trying to make me choose between something I really do not want, but I need. And something they think I don’t need but absolutely want.
No one tells you about the times you know what you want, but you can’t do it. I guess that’s not a reality many people understand.
It’s not even a choice.
They get a window into my life, that everyone else gets to keep closed. And they’re using it to judge me.
I don’t like it. I just want them to leave me alone.
I can’t do this again.
My carers were off with me this morning. They complained about things I couldn’t change and it’s really gotten to me.
It’s got me spiralling a little bit about the things in my life that I cannot change. I didn’t choose to live in a house with a garden that I can’t look after, and yet I feel like they’re punishing me for it.
I can’t change my situation and I feel guilty for it.
I don’t want to be around so many judging people, and yet I am forced to be because of the help I need. And at the minute it’s really bugging me.
What are your morning rituals? What does the first hour of your day look like?
The carers get me changed and dressed and then I tend to go back to sleep in my wheelchair.
This depends on whether I have to do things in the day, mind you. If I have to do things that involve going out, and have a say in when they get done, I try to get them done as early in the day as possible. In this case I wouldn’t go straight back to sleep. I would wait until I’ve done what I needed to do.
If I don’t have a say in the times things need to be done, I would probably sleep until the time that I need to do whatever it was.
If I get a say in it, which because I need help to do if, I don’t always. I like to get the dogs walked as early as possible. In all honesty this is just to get it over and done with so that I can go back to sleep.
Fatigue sucks let me put it that way.
So I don’t have a hole today, but the reality is still the same. If I’m not comfy after the carers leave there’s nothing I can do about it.
To say I’m not comfy today, is an understatement. But I’ve been worse, and I still have a day to get on with.
Worse, I’ve had to cancel my care call tonight so the person I live with can go out. So that means I’ll be stuck, being uncomfortable for 24 hours.
Its going to be rough.
And I’m not sure that will ever stop surprising me.
Tonight I let the carers in myself, as I do periodically. These were carers that hadn’t been before when I had been in on my own. and so they were very surprised.
They kept saying that it was good for my independence. But I honestly don’t like them judging my independence, and praising me for what they think is a positive step.
To me a big part of my independence is relying on others, it is being able to ask for the help that I need when I need it. As this is something I have always struggled with.
It’s important to remember that independence is different to everyone, and that despite what the word may mean, it doesn’t just mean doing things on your own.
Additionally it’s not helpful to praise disabled people for doing things that non disabled people do all the time, like opening their front door independently. This is how inspiration porn starts.
It honestly gets old that people are so impressed with me living my life. I didn’t ask for their input and I really wish they wouldn’t give it me. You would think that carers in particular would know better.
Just keep your comments about people living their lives to yourself.
From the perspective of someone who’s had care for more than half there life.
It can seem pedantic like someone is not respecting the carers job, if they get upset when a carer tries to come early for a call. But it’s not that simple.
I want to start this. It’s saying that I respect carers and the job they do. I believe they deserve respect, better pay, and better work environments. But in terms of this post, that’s the last time I’m going to take their side in this situation. This is about what it is like to have carers, not be a carer.
Nobody wants carers. Nobody wants care. Many people are acutely aware of the fact that they are in the minority with what they need help with. And it’s draining. You, as the carer are the one that chooses to be in that situation where you are providing care. This is your job, a job you chose, as much as anyone chooses to work. And if you didn’t have a choice in getting a job as a carer, that is not the fault of the person or people that you care for. Remember that.
If a person needs care, whether that is part of what they need to get through day to day or getting them independence. It doesn’t mean that accepting the care is going to be easy. Personally, it took me a long time to accept that I needed care, sometimes I still struggle. And I am a person who’s needed the kind of help I now get from carers her whole life. But getting it from carers was still an adjustment, that I’m still adjusting to.
One of the most difficult parts about needing carers for me is the tuning. It’s the fact I can’t just go to bed when I want or get up when I want. That it has to be so regimented to ensure that I get it. Can you imagine for a second if you had to get up and go to bed at the same time every day? And someone came to your house just to make sure that you did as you were told.
If you get your care from a company, and you’re very lucky you might get your care at or near a time that you actually want it. If you’re extremely lucky they might actually stick to that. And if anyone is reading this thinking why don’t you just get a PA (meaning self employed carers over a company) they are a lot more difficult to get than it might seem. Companies provide a level of consistency and security in care, that some people need.
Whether or not you get to choose the time of your call, which most people don’t have the luxury of doing and have to compromise. The time that they do come can be very important to someone. Knowing what time they come and expecting them to come at that time, can feel like the last part of control you have in an area where you feel powerless.
Like if I have to do something at that time, you will do it at that exact time. And it can be difficult to have that time altered, as you feel like that little bit of control you had over your own care is gone.
I just don’t think you can understand what it’s truly like to have carers until you’re in the situation where you need them. Some seem to view it as a choice we should be grateful for. But honestly, it’s not, and it’s hard, and I think carers need to remember and respect that.
You made the choice. We didn’t.
Now I’m aware having a hole in your pants isn’t a big problem, but it is problem that I’m not able to do anything about. And that makes it worse than a larger problem I could solve.
Once I’m dressed in the morning, I cannot get changed until Carer comes in the evening. The person I live with cod, undress me but not put any clean clothes on me. So I have to decide that I don’t need to go out for the day before I get them to do that.
While it would be possible for me to get more care in the day, in fact, this has been suggested to me several times. Getting another call would mean that I have to stay home or home in the middle of the day. I already have to be home for a certain time in the evening, I don’t want to sacrifice more control of my life the fact I need Carers. I don’t even like to leave the house, and that’s a whole of the story. But I really appreciate the ability to leave if I want to, and I’m nervous of doing anything that could take that away from me.
And then there’s the cost of my Care and what would happen if I cost the system too much? And while there is an issue, I try not to think about. It is something that is on my mind when considering how much help I will take from the government. I’ve seen the horror stories. And I’m not prepared to give up my babies.
Regularly needing help from others comes at a price. This price can look different for different people, but it is always there. Just be aware of this when you think somebody has it easy because they have everything done for them. I would much rather be able to do it all myself,,whenever I want, the way that I want.
I am aware that this is such a stupid insignificant problem, and those are those are the ones that annoy me most. I think because I know that if I want to disable, I would be able to solve them.
Here’s hoping that the worst problem I have today is a hole in my pants.
Sometimes, being alone feels inaccessible to me. And yes, I phrased it like that just to fit the blog, but let me explain.
I’ve only had to be alone for a couple of hours today. But I did have to answer the door to my carers during this time. I somehow managed to get myself caught in my charges. I have a habit of being able to do that, in ways you wouldn’t imagine.
Usually I have the help to get myself out of it, but tonight I did not. I panicked. however, I was able to unstick myself from the mess I had created and therefore let the carers in. But I know for a fact, this will now have made me nervous for the next time I am alone when I’m expecting my Carers to come.
But as I’m sure, whoever decides to read, this will know, being worried about something doesn’t mean you can avoid it. For me, it comes up every week or so at the minute.
The most annoying part of all of this is that I really want to be alone, I think. But because of my disability, I am unable to be alone for very long periods of time. And it’s just my luck that during the times I am alone, something seems to always go wrong, like tonight.
You’d think I would be used to it by now, not be able to be alone. But I don’t think you ever get used to the things in life that aren’t a choice.
My Inaccessible Life 