I wish I didn’t have to have so much to do with people.

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. 

I thought about it.

Honestly, I thought about writing this post for today, but I just never got around to it. So I’m admitting straight from the beginning that I’ve backdated this one a little. Sorry.

Honestly today was a great day in many ways and a difficult day in others. Emotions are funny like that.

I dyed my hair, and I really like it. It’s funny how something so simple (in theory) can make you feel so much more like yourself. I say in theory because it’s actually kind of complicated to do when you’re in a wheelchair. But it’s doable, and I love it. It’s well worth it.

But emotionally I struggled a lot today. Part of one of my chairs broke and I ended up texting my OT in the middle of the night about it. Honestly, it made me feel really guilty, as often happens when things break around me. Even if I’m not the one who’s broken them, I have a lot of guilt over the fact I can’t fix them.

I often spiral in the fact I feel like a brake or damage a lot of things. Which is tied to feelings I have of always being in the way, causing problems and making things worse. While logically I know that accidents happen, in practice they just make me feel guilty.

The way we experience emotions

Which aspects do you think makes a person unique?

I think the most unique thing about humans is the way we experience emotions.

The fact that different things make us all angry, sad, scared, loved. While you may understand someone’s emotions it can be difficult to understand what triggers them, and impossible to understand how they feel them. And I honestly find that extremely fascinating.

I firmly believe that nobody’s experience is exactly the same where emotions are concerned. But if you can try to understand someone’s emotions in a situation you may be able to understand more about them and who they are as a person.

I feel like emotions, the emotions of others, are a big part of how I understand the world around me. I think this comes down to my disability, and the fact that I cannot understand the world completely physically. No matter how I hard I try, physically there will always be  things that I miss due to my disability.  But emotionally I am able to have a more complete understanding of the world around me. Man made ablesim doesn’t exist in the emotional world.

But just because I understand the world around me better through emotions, doesn’t mean that my emotions are easier to deal with.

At the minute I am dealing with anxiety over doing something that I know is important but scares me because it involves a phone call. I hate phone calls. No matter how important I know they aren’t I don’t want to make them. Annoyingly sometimes I get the confidence to make the necessary phone calls, but of course this never lines up to when I’m actually able to do that. And when I am able to do it, my anxiety acts up again.

What I can be sure of is my emotions don’t like me. But maybe that’s part of what makes me a unique person.

Comfort.

Sometimes if I’m lucky I’m able to get comfortable, for the record now is not one of those times. That said in the grand scheme of things I’ve been a lot worse. 

But I know that at some point I’m going to have to change the position I’m in, and I can tell that’s going to hurt. I’m really not looking forward to doing it. So much so that I’m debating sleeping in the position I’m currently in, just to avoid moving.

Chronic pain sucks. The lack of control in my life sucks. But mostly right now my legs suck.

Concerts and shows.

I’m looking to go to another show. I recognise the privileged position I am in, that I can consider going to shows. That I have the money, time and the physical health and ability to do so. But every single time I do this I’m reminded of how disabled I am.

The extra steps I have to take, to get one of the limited number of wheelchair spaces at at a venue, this venue has four. And not knowing which of these steps this specific venue wants me to take. 

I can’t just buy the ticket on generally sale. I have to first know if the venue is accessible, and then if I need to buy another ticket or if the person who’s support I need at concerts is able to get a companion ticket. I then need to know whether the ticket needs to be bought from the venue website or from the standard ticket sale site.

I don’t want less steps, I want the same amount of steps. This is accessibility.

Now there are many reasons that concerts are inaccessibility to me. So once I’ve bought a ticket, doesn’t mean I’ll have a great time when I go. It feels like my disability is every, like it touches everything, and it does. Even even concerts. Even music.

My freedom is yet again tainted by my disability. More, by the inaccessibility of the world around me.

But I keep trying, I’m going to do my best to keep trying, to go to the show. To be an active part of the world around me. And not just feel stuck and forced to live in it. Concerts and shows help me with this, if they go well. If the experience goes well that is, if it goes badly the opposite happens. But I can but try.

Hospitals.

It may surprise you to learn, or it may not depending on your life experiences, that hospitals can be very inaccessible places to be.

I am fortunate enough to not have to spend too much time in hospitals, but I do have one fairly regular appointment. Today I’m at that appointment, though at a different hospital. And I have to be honest, that the same appointment being at a different hospital has really thrown me.

It feels as if the routine of my regular appointment has been disturbed. The people assisting me, don’t know me, and to be honest with you it makes the experience more difficult.

I’m not talking about the medical side of it all. I’m talking about the other bits required because of my disability. The parts of my life that follow me around and always seem to get in the way.

The biggest part is hoisting. Something staff generally don’t seem to be used to. My regular hospital got used to it because of me.

Getting me on the bed is such an experience, that it is almost worse than the procedure sometimes. These are complete strangers I’m trusting to take me out of my chair, in an unfamiliar environment, and I have no choice in it.

I should be used to the fear, and the anxiety. Getting out of my chair. The uncomfortable nature of it all. But I’m not sure I ever will be.

Being disabled isn’t accommodated well in hospitals. They expect you to be ill, but not to have ongoing problems they can’t solve. Disability seems a step to far for them.

All of this and its not even the procedure itself I’m worried about. In fact that’s probably the easiest part.

I’m not tired.

But I probably should be.

As I write this it is 5:30 am, and while I know I’m gonna regret saying this later, right now, I’m not tired. No doubt this is because I took a nap in the late afternoon yesterday.

One of the joys of having fatigue is you don’t choose when you get tired or how quickly you get tired. But I don’t always have fatigue I don’t think. Sometimes like right now, I have a lot of energy, so much so that I can’t sleep. Even though I know, I’m going to regret it later.

Is that part of fatigue? I don’t know.

One of the ways I have dealt with being disabled emotionally, is by understanding as much as I can about it as possible. But the research I have done, seems to draw a blanket fatigue. The exact symptoms could very easily fit into my cerebral palsy as well.

I suppose it doesn’t really matter, either way, I’m dealing with it, no matter what causes it right? But not knowing kind of bugs me. I do like to know these things.

My sleep pattern has always been messed up. I’ve always either slept not enough or far too long, and never seem to get it right. Either way, I am always tired. Right now I’m tired but that doesn’t mean I am able to sleep.

This is just another part of my body that doesn’t match up with my brain. And I should definitely be used to that by now. But I’m honestly not sure that you ever get used to being disabled.

Why do I keep all the lights off?

Most of the time I keep the lights off in my house. If I don’t all I see is the damage I’ve done to the walls in my chair.

A combination of a house not built for a wheelchair user, and frankly shoddy council work. You can literally wipe the paint off, believe me I have. And because I can’t work a full time job, due to a combination of my disability and the ablesim and inaccessibility of society, I’m unable to do anything about it.

Maybe if I could work, if I could earn money. If I could have more than just enough to live on, things would be different.

But they’re not different.

So I skip the perfect homes, admire the damage and try to feel less alone.

I sometimes wish the things I couldn’t do didn’t bother me, and wonder if I would live a happier or a calmer life if that were true. But they do bother me. The walls in my own home can be difficult for me to look at. The homes that are more than just houses, make it harder. So I don’t look.

In my own house, the lights stay off as much as possible. And I cover what I can, though it’s not all I wish I could, of the walls. And I try to get on with my day and pretend it doesn’t bother me, and hope that one day that’s the truth. Or, you know, I become a millionaire.

Why do I try to post daily?

If you actually read my blog regularly, which I thank you very much for by the way. Then you’ll notice I try to post something daily, occasionally though I will admit that I have backdated a post or two. But you may also have noticed that some of posts have more substance than others.

This is because I have more motivation to write on some days than others. But I force myself to write something, anything, almost daily. And yes writing this post about writing posts is me trying to write something with zero motivation or idea what to write about.

I do this because despite how difficult I find it write some says writing is freedom to me. Writing sometimes feels like the only outlet I have in life, the only level playing field that I have.

I love to write. I feel sometimes that I need to write, and yet sometimes that I can’t write. So writing something daily, is better than writing nothing. There was a time when I wrote nothing, and it was a very emotionally dark time in my life. At least it’s putting words to paper, or screen to be more accurate.

From what I’ve read in the writers groups I’m in, I suppose you could say I have a major case of writers block. I want to write so badly, I have all the ideas. But I often lack the motivation to work on my ideas, or worse the physical and/or emotional energy.

When I do have the motivation but I lack the energy, I feel like my body has yet again betrayed me, in the only thing I feel I’m supposed to be good at.

I’m disabled after all.

But every word, every sentence, every post is me trying. Trying not to let the doubts or my body win. Trying to do something that I enjoy, even when I’m not enjoying it.