Tag: Tired

I wish life had a turn off notifications button.

On By Katy DalyIn My Disability TruthLeave a comment

So I’ve causing a bit of a problem or raising awareness depending on how you look at it, of the wheelchair accessible places on trains. Due to the wonder of the internet, what I have said got a little bit too popular, which means it hit the wrong audience in areas. But when it all got too much, I was easily able to just turn off the notifications for posts, and I’m here to say I love that.

Sometimes when people are being extremely ignorant, wilfully or otherwise. It can be hard not to continue to reply even when you know that you’re not getting through to them. Wilfully ignorant people have to want to learn something new in order for you to get anywhere with them. But this can be hard to remember in practice, especially when the truth is very often don’t want to hear anything other than their own experiences.

So you can end up going round and round in circles very easily. And it can be extremely helpful just to be able to turn the notifications off and have the circle be ended for you. But sometimes I wish possible to do in real life.

It can be hard to let things go even when you know that you definitely should. And I think it would just be nice if someone or something else could do that for you. Not necessarily permanently, but just so you could have a break.

In a world where we carry devices, we can be immediately contacted on with us all the time, I think that a leave me alone future for real life would be extremely helpful.

Maybe I’m the problem though. Maybe I just shouldn’t be drawn into such arguments so easily. But it’s one of the reasons I love social media, I get to argue my argue my points, state publicly whatever I believe is right, and my disability does not get away with me doing this.

Say what you want about social media, but it certainly has its advantages alongside its well known disadvantages. Perhaps so if you’re supposed to have a limited view of the world due to its accessibility.

I haven’t decided yet if I’m going to share more about the accessibility of trains, as has been my focus for the past few days. It’s not that I don’t believe in the importance of what I’m arguing for, I know that I’m right. But I just don’t have the energy to write about it. It really sucks when you never have the energy or motivation to do the things you enjoy, thanks fatigue.

Even when I sleep I’m tired.

On By Katy DalyIn My Disability TruthLeave a comment

I’m writing this post at 2am the following day. It will be backdated.

I woke up after sleeping for 7 hour, still tired, in a wet bed. Incontinence sucks, let’s just leave it at that.

I’ve slept so much recently and it hasn’t made me any less tired and that just makes me sad. Fatigue is an overlooked problem in society. People thinking being tired isn’t that bad but honestly it’s hard to deal with.

Struggling now as I know I’m not going to be able to shower tomorrow. And I will definitely be tired all day today, even more so because I woke up at 2am.

Starting regular medication.

On By Katy DalyIn My Disability TruthLeave a comment

Before I get all weird about this, I’m going to say it’s just eye drops, so it is really me being a little be extra about all of this. But this is my blog, so the only place as I get to do that.

All my life different medications have been pushed on to me. This is the standard treatment for your condition etc. So as soon as I was old enough, I decided that I would not take any medication or anything like that until I understood exactly why I needed to take it. This for me extends to creams, drops, painkillers, muscle relaxers, anything.

To be clear I’m not against medication, I will, and have taken antibiotics. I will finish the course. I will also take painkillers and muscle relaxers if I deem them necessary. But taking preventative things is not something I like to do.

Muscle relaxers for example, work best when taken regularly. But it was hard for me to take them regularly when there were days when I wasn’t in pain and it just seemed silly for me to take them. Specifically where muscle relaxers are concerned they would make me drowsy and as I already have fatigue, I have just never found the side effects worth it.

I have always been very aware of the likelihood of me needing to be on some sort of medication at some point in my life, so I didn’t want to start taking things earlier than necessary. Part of this is because I know that medication can stop working if you take it for long periods of time, so I have always wanted to be sure I definitely need to take something before I need to take it.

So the need for the eye drops have been explained to me, very well. And I will of course be using them, to protect my eye sight. But I kind of feel a little weird about it.

I feel like I have reached a milestone in my life, a weird milestone, but a milestone nonetheless. Given my disability getting this far in life without needing medication is something. I don’t want to say impressive because I know that taking medication is not a bad thing. But it’s starting now, for me, I guess.

It’ll be fine, I know. And I will get used to it, like everything else. But my first toe in the pond of regular medication, had to be something I needed help to do, didn’t it? I can’t do eye drops on myself. And that makes me just a little bit sad.

I just want to be able to do things for myself, but the list of things I can’t do for myself continues to grow. I know it’s not bad to need help, but it’s just hard.

As I said I know I’m overthinking this but I honestly can’t help it with this one.

I wanted to go out today.

On By Katy DalyIn My Disability TruthLeave a comment

At least I think I did.

But my chair and my legs had different ideas. My body just doesn’t want to do today and I’m struggling with whether that means I did or do or not.

I don’t know anymore.

I think because I’m so used to my body just being against me. That I forget how against me it is daily. Until I have the days where it’s just that extra bit against me. It makes me so sad, and I know it shouldn’t.

I should be used to this crap without letting it get to me.

I’m just tired of it. Sad I miss out because of it. I guess today I just don’t want to be disabled.

Why do other people get a say in my life?

On By Katy DalyIn My Disability TruthLeave a comment

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.

Concert day anxiety.

On By Katy DalyIn BlogLeave a comment

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.

Opening my laptop

On By Katy DalyIn My Disability Truth, My WritingLeave a comment

The last post I wrote here was on my difficulties writing, and now that I’ve opened my laptop, I feel like in a way I could write more. That got me wondering if my biggest issues is opening my laptop? Like a more techy version of struggling to pick up your pen, I suppose. Once it’s in your hand, the hardest part is over.

So maybe once I open my laptop, or perhaps more specifically the file I’m working on, the hardest part is over. Who knows?

All this said, as I sit here writing this, despite my increased motivation to do so, I can feel the fatigue setting in my body. Despite only having been awake a couple of hours, I know that I could really do with a nap. But i don’t want to put that need to nap on the person I live with. We’re watching something together, and I don’t want to destry, I mean I don’t want my fatigue to destroy what we are doing. I know they will be okay with me sleeping, but it being something that feels so out of my control, doesn’t mean I don’t feel guilty. If I’m completely honest it makes me feel more guilty.

It’s an odd feeling, being both motivated to write, and fatigued at the same time. My brain feels wired, with words and ideas. It feels like breathing to get them out, to see them on a screen, to get some sort of release. Like I don’t even have to try to get it done. But my body feels tired, like I can’t keep up with the words I want to write. Like my body didn’t sleep last night, even though ny brain did,

This isn;t how I always experience fatigue, just how I’m experiencing it right now. The physical slowness, tiredness, is always there. However the mental tiredness comes and goes with the fatigue. Sometimes my brain feels just as tired as my body, and that is actually easier to deal with. At least everything I am feeling then is on the same page, right now it all feels to different to suceed at at.

I have so many ideas that I want to get out, but right now it feels harder to get the words out over the tiredness.

I just need a nap, sorry.

Fatigue sucks.

On By Katy DalyIn My Disability TruthLeave a comment

Sometimes I think I’m so used to be tired that I don’t even notice that I’m tired anymore. I struggle to say I even have fatigue, it’s just me. Like the pain and discomfort, for me it’s my normal.

And then there are days like today where all I can feel is tired. Where the world feels a little bit slower and I’m fighting against the tiredness in me, as well as everything else.

Now I should say something clever or at least a little bit profound about living like this. But I honestly just don’t have the energy for that today.

I need to go back to sleep, but the joys of being me I don’t actually know if I’ll be able to sleep. I guess will have to wait and see.