Tag: Sleep

Functioning on little sleep

On By Katy DalyIn My Disability TruthLeave a comment

So this is another backdated post.

Today was very busy with almost no energy. I slept 2 hours not consecutively, then had to get up and go out. I didn’t really stop until I got home about an hour before the carers. I then fell almost straight to sleep and woke up the next morning. Not including briefly being woken up for care which I honestly don’t remember. 

I barely had the energy to function and do what needed to be done, let alone write, hence the backdated post.

I guess my need for sleep finally caught up with me. This happens occasionally. I just wish it actually made me feel like I’d slept.

Are you awake?

On By Katy DalyIn My Disability TruthLeave a comment

This is the message that I often send to the person I live with in the middle of the night to see if they’re awake.

I’m in a position where if it was an emergency, I would be able to ring them if I needed them. But there are some things that just isn’t fair for me to wake them up in the middle of the night. I’ve made a list of exceptions to only messaging them once it gets past 12 o’clock at night.

This list is short. It only includes whether I am falling out of bed in anyway or if I have dropped my bed control. I would hope that it is obvious why I would need to call for help if I was falling out of bed. While I have never fallen out of bed, well not since I was a young child and used to throw myself out to bed in order to get my parents attention. I have had my leg fall out of bed and been unable to get it back into the bed myself, this is when I call for help. The reason dropping my bed control is on the list of acceptable reasons to call for help after midnight is because I’m unable to sleep if I cannot move the position my bed is in. It causes me a lot of pain to not be able to change my position when in bed, particularly if I am stuck lying flat. It isn’t as bad if I am sat up pain wise, it’s just incredibly difficult if not impossible for me to sleep.

I’m writing this post now because I’ve just had to message them in order to see if they were awake, thankfully they were. This means that I can get the help I needed, which while it wasn’t vital it is going to help me to be more comfortable for the night. The time it was the position of my electric blanket that was bothering me, not something worth waking them for, but still a relief to have fixed.

For reasons I do not understand I need to have the same fabric on each foot or it’ll really irritate me. Preferably it’s my electric blanket as the heat also helps me with pain, but as long as it’s the same I’m comfortable ish.

Now I have my electric blanket over each foot and leg, but I’m trying to debate whether the pain is bad enough that I need to put it on. Really I should have asked her to pass me my fan as well, so I can have it on without overheating, but I forgot.

That can be one of the most frustrating things about needing so much help, is I can only have help on there say so. And to keep things comfortable between us I have to try to remember everything I need help with all at once.

But before you think the person I live with is horrible, they never actually said this to me. It’s just what I have picked up after a lifetime of needing help from others. I have to need help as little as possible and make it as easy for them to help me as it is possible. It’s probably me really, somewhere in my brain that says that. I can’t ever actually remember being told this, it’s just what I’ve always believed. I’m trying to not think too hard on why that might be.

My sleep is shocking at the moment, I feel like I’m going from no sleep to too much sleep with nothing in between. And no matter which I get, my fatigue is till the same. I’m still at the very least tired, most of the time exhausted. I often joke that I was born tired. I don’t remember ever going more than a few hours without being tired in the day.

But when my sleep schedule is better I’m able to push myself to do things and have a bit of a life. I’ve got upcoming plans that my current sleep schedule is going to make very difficult and I’m honestly concerned. But that’s just life for me.

I end up putting off plans where I can do I can sleep in the day, even though I know that doesn’t help me. I don’t want to let people down by doing things when I’m just too exhausted to pay attention, I would rather cancel.

The idea of going out of the house is rarely appealing to me. But when the fatigue steps up to the level it currently is and my sleep pattern is rubbish, it’s even harder for me to want to do anything. Having the dogs and things I can’t cancel without a lot of guilt help. But I also just have to wait until this passes, until things right themselves.

But right now I’m sat it’s 3am and I’m only now just getting tired. I have the chance of plans tomorrow but I’m honestly debating whether to cancel or not so I can just sleep some more. I know it’s not nice and I should just go out. But I just don’t want to, at least I think I don’t want to. I guess I’ll decide tomorrow what I’ll do.

I hope you’re not awake at 3am if you’re reading this.

Day two – Sleep.

On By Katy DalyIn My Disability TruthLeave a comment

Today I slept pretty much all day again. I’m hoping that’s it for this current bout of fatigue.

I actually feel awake right now, but I just hope how much I’ve slept in the past two doesn’t stop me sleeping tonight.

Fatigue is really annoying. My energy levels doesn’t match how much I’ve slept and I’m almost always tired. Apart from right now, it seems.

Sleep.

On By Katy DalyIn My Disability TruthLeave a comment

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.

Fatigue is winning today.

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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.

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.

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.

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.

My sleep is really messed up.

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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.