Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Okay so this is backdated. You can be mad at me all you want, but this is my blog.
I’ve done the bare minimum of the things I need to do and then slept all day, them all night, hence the lack of a post. I wish I felt like I’d slept for it, but no such luck? That’s fatigue for you.
I’m sat here waiting for food, and I can feel the fatigue kicking in.
Hoping I’m going to have the energy to eat my food. I’m so tired but I have food and TV related plans this evening.
Fatigue is just blatantly irritating me right now. I slept. I shouldn’t be tired.
I don’t know if it’s the heat, or if it’s because I’ve spent most of the day asleep. But I’m so tired today. So this post is completely a tick box post just to say I’ve written something today.
I wish I didn’t spend so much of my life tired. I wish doing anything didn’t take so much energy out of me. I wish I could live a life and just not want to sleep. But right now I’m going to sleep.
Last night I slept for 12 hours so I feel ready for the concert I’ve got this evening. But knowing my luck I’ll be tired by the time actually comes around. Sometimes my own body doesn’t want to make fun accessible to me.
Though my body is not my biggest concern on a concert day. I feel better once I’m in the building and I know no one is going to try to make me leave. It’ll be worth it I know it will be, but there’s a lot of anxiety involved in going to a concert for me.
I really want to see that it baffles me that society hasn’t thought of the need to make concerts accessible to disabled people. But in order to say that I would have to be naive and forget that he just doesn’t care about disabled people. We’re not allowed to have fun.
I really just wish having fun was more accessible, it’s always so complicated, and has so many moving parts. So many that I find myself unable to deal with them and leave sorting the accessible to the person that goes with me. I just got too angry to see it with a clear head. I can’t get past the fact that it shouldn’t be this complicated to go to concerts if you are in a wheelchair. That when the venue itself is accessible, there’s no need to make it as hard as many venues do.
That said, I hope this will be a fun experience. And I actually get to meet the artist (hopefully), which makes it even better. When I say hopefully I do have a ticket to meet the artist, but whether they will actually let me do that is another question. I’ve never done this before so I’m slightly nervous that my disability might make this complicated as well. Or I should say that the venue will use my disability to make this more complicated. But I hope it will go well.
The reality is I don’t know how this will go until I am there. So I will just have to wait and see. And try to focus on the best part of all of this, the music.
I love music. It is a tool that makes me feel part of society, mostly. I feel the same as the others who listen to it. It’s only when I go to concerts that things can get complicated. But music itself is the least complicated way for me to be part of society.
Jot down the first thing that comes to your mind.
On when you read the prompt and when you complete it, but I suppose that’s really the point isn’t it?
I’m tired. That’s the first thing that comes to mind, I’m going to sleep.
Fatigue is a big problem for me at the minute. And I did the thing you shouldn’t do and googled, it’s going to get worse.
It’s really hard to get the motivation to do thins when I just think hey I’d rather be asleep than do that. And if I do massage to catch it where my brain is on board, it always seems like my body is on a different page.
There are many reasons why it can seem that is my body that makes the world inaccessible to me, and this is just one of them. I have to push myself against my own body.
I’ve tried to regulate my sleeping pattern and even if I can do so for a while, it never seems to stick. Something always happens, I sleep to much or not enough for one day and it completely throws me off.
I’m going to really struggle this week. I have a big day this week where I’ll be travelling all day, and I can already tell I’m going to be exhausted for it. Afterwards though it should help my brain and my body to reset.
So I guess this one’s just to say bare with those of us who seem like we never sleep or sleep to much. We’re trying. It annoys me to.
Describe something you learned in high school.
I didn’t learn that it was the good thing people tell you it is.
As I’ve grown I’ve learned everyone is different. But sometimes I still feel a kind of different I wish I wasn’t. I’m trying to work on that, but it’s not linear.
Let’s just say this was my day today. I got to the end of it, and don’t have the energy to write.
I just wish my body, my motivation and my energy lined up. But not today I guess.
Sorry about yesterday. After a day out with friends and looking after one of my babies after getting spayed. I crashed.
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.
My Inaccessible Life 