Tag: Fatigue

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.

Fed up

On By Katy DalyIn BlogLeave a comment

Fed up of business explaining away their choices for choosing an inaccessible venue. That’s a choice you’ve made. Own it. Own the fact you care more about your business than accessibility and stop hiding behind excuses.

I might say more on this later, I might not. I just don’t have the energy now. But you get my point. There’s no excuse for businesses having inaccessible venues and I will without exception be blaming the owner for this.

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.

I’m not tired.

On By Katy DalyIn My Disability TruthLeave a comment

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.

Motivation, energy and disability

On By Katy DalyIn My Disability TruthLeave a comment

From experience a know that my disability means that my physical energy doesnt always match up with my motivation and mental energy to do something. I often find that when I have the motivation or the desire to do something, that my body seems to disagree with the fact that I want to do it, and I don’t have the energy to even try. There are many things that I want to do with my life that lay on the back burner because of this.

I just wish for once in my life that things would line up for me. That my body and my brain would agree on when I can do something, that way maybe I would be able to be a little bit more productive, and actually get the things done that I am try to do.

Maybe then achieving things will be something I feel like, I’ll be able to do.

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.

This was supposed to be something.

On By Katy DalyIn My Disability TruthLeave a comment

I started writing and fell asleep earlier today, later me is going to hate that when I can’t sleep. But the draft didn’t save so I’m not completely sure what I was writing about.

Fatigue sucks. It’s like my brain just stops being able to function and I wake up disorientated and unaware of when exactly I fell asleep. It’s not fun.

Hopefully I remember what I was writing about. If not I guess thet ones just lost to the world.

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.