Tag: Tired

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.

Nighttime.

On By Katy DalyIn BlogLeave a comment

I want to be alone a lot of the time, at least I think I do. But my disability means that the times when I’m alone are often the most debilitating for me.

Take now for example, as I write this post I’m lay in bed, and I find that one of my chargers isn’t working. I have other wires but they are not where I can reach them myself. And while I could wake the person I live with, and they wouldn’t mind, this is not something I deem important enough to wake them after 12 o’clock at night for.

In the past when I have had a problem, but not a serious enough problem, I have created bigger problems that I deem worthy of asking for help for. For example dropping my bed control, without which I am unable to move in the night, which causes so much pain that I am unable to sleep. But that isn’t something I will be doing tonight.

No matter how much I find myself wanting it, being alone reminds me what I am unable to do on my own, it reminds me just how disabled I am. Being alone for any long period of time is always going to inaccessible to me. And sometimes, like right now, it is difficult for me to accept that reality.

I wonder if I do you want to be alone or if I just want to be able to do things for myself? Or if what I really want, is others not to have to do the things for me. While all those things sound the same, I don’t think they are. Wanting to be able to do things for yourself and not wanting other people to do them for you or different. One is about independence the other is about being a burden to those around you.

But when you can never be alone for any meaningful length of time. When you always need the help of others to do the simplest things. You are always going to be a burden, or at the very least feel like you are a burden, in some way or another.

Maybe the reason I want to be alone is because I don’t want to feel like a burden to anyone. And when I’m alone I can’t ask for help, so I can’t bother anyone, so for a little while I’m not a burden.

Not being disabled will always be inaccessible to me. And that means the life of those who aren’t disabled, the life of true freedom and independence, will always be as well.

So why call this post nighttime?

Well, if it wasn’t obvious that tends to be when I am alone, the most thanks to my messed up sleeping pattern. I’ve heard it said before that nighttime is the worst for your emotions, as this is when they are free to control you. And honestly right now I would have to agree.

Nighttime is when I am alone. Nighttime is when I realise being alone is inaccessible to me. Nighttime is when I cannot sleep.

My sleep is really messed up.

On By Katy DalyIn My Disability TruthLeave a comment

I often say I’m always tired, or that I was born tired. I can always go for a nap.

Yesterday I slept all day on an off, meaning I couldn’t sleep at night. While I didn’t sleep all day today, I did sleep on and off. I then fell asleep early explaining how I’m awake in the middle of the night, so tomorrow is going to be difficult.

Fatigue sucks. No matter how much I sleep, which I can never seem to do at an appropriate time, I’m always tired.

Being disabled can be kind of weird.

On By Katy DalyIn My Disability TruthLeave a comment

Well at least if you’re me.

Today I lost a bottle of pee. A combination of not wanting to have a bag attached to me constantly, struggling with intricate physical activities and becoming easily distracted. Mean that this isn’t actually the first time this has happened to me.

So I guess this one is short and sweet, because I am tired, and a warning not to drink random bottles of liquids that you find in my house or on the street. If you need that warning.

Sometimes it feels like comfort is inaccessibility to me.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Or at the very least fleeting.

Today I experienced comfort for a short while, and for the first time in a good while, nothing hurt. But it never seems to last, and it always passes to quickly.

You can’t stay in the same position forever, eventually you have to move. And when I move, the pain returns.

I didn’t want to move today, but I had to.

I’m now in bed, in less pain than I was, but because I moved the pain is still there.

Even when I get comfortable, I know it’s gone whenever I will move.

Comfort is fleeting.

Cacoon

On By Katy DalyIn My Disability TruthLeave a comment

As I write this, I am underneath two blankets, one is heated the other is not, the nonheated one is over my head.

Image Description: A closeup selfie, cut off at the nose. I am looking slightly off to the left of the camera, a white blanket covering the top right of the shot.

The heated blanket under the quilt helps to warm me faster. It gets pretty hot under here. But the heat helps enormously with pain, after being out in the cold.

I have not long gotten back after an over night trip, which has required me both to sleep in my wheelchair and to not get changed for more than 24 hours. Rail replacement buses and the joys of travelling on a Sunday, were also part of the, adventure.

I plan to write more about this in a future post, because it’s been an experience, as it usually is. But right now, I need to try to chill for an hour or so until the carers come and I can get into bed and properly relax. I just don’t have the energy, unsurprisingly, to go into detail about all this right now.

I crashed

On By Katy DalyIn My Disability Truth1 Comment

If you pay that much attention to this blog and what I write, you may notice that occasionally backdate posts. Who says I don’t get to play a little bit with time.

I had to do it with it my last post, because I’ve just slept almost 12 hours, apart from being awake briefly when my carers came. This occasionally happens to me, and is more likely to happen when I haven’t been sleeping properly. It’s like my body needs to shut down physically for a while.

This time I was woken up by a not nice dream that I’m trying not to remember.

Occasionally I wake up well rested from these crashes. This is not one of those times. I feel a lot less fatigued but I still feel tired, like I could still do with a nap. But I always feel that way.

This time I’ve also woken up cold and uncomfortable. But there isn’t a lot I’m able to do about it. I kind of wish I was still asleep.

It’s a lie that you ever get used to the pain. I think sometimes you just forget it’s there. But sometimes it feels different, as I write this my arms are aching. And while it doesn’t hurt more, different pain throws you more than the pain that happens all the time.

But the electric blanket is helping. And I’ll be getting up in about half an hour, and getting on with my day. I hope you’re able to get on with yours and that you have a good one.