Tag: Fatigue

I’m supposed to show tonight

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And I really don’t want to.

I’m sat here in what I call my comfy chair thinking about the fact that I am comfortable, and in about an hour I’m going to be a lot less comfortable.

When you’re disabled, you often have to do things on other peoples schedule. Which means I have to have a shower or at the very least get into bed in an hour whether I want to or not. Now this is strictly true because I can say if I want to both of them.  but if I was having a shower today, I can’t have one until Tuesday. And if I say no to getting in bed it also means I’m saying no to getting changed. This means I will be uncomfortable and dirty by the time the 12 hours have passed and I’m able to get that care again.

So I don’t really see it as a choice, when the decision is so stacked against me. Do it later, doesn’t really exist for me, and on days like today that can be incredibly frustrating.

I just don’t want to move. But I know I’ll have to soon.

I wish life had a turn off notifications button.

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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.

Chronic Discomfort

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So sometimes I struggle to say I have chronic pain. I mean I do, but I’m just so used to it, that I don’t think it always registers as pain. It’s like I’ve turned it down to get on with life. This is probably something that only people who experience chronic pain understand.

But something that’s chronic but not constant that I haven’t figured out how to turn down is my chronic discomfort.

I tried to look into chronic discomfort, as that’s how I learn to deal with things, to learn as much about them as I can. But I couldn’t find anything, and it kept taking me back to chronic pain.

My limited research does have me wondering if I’m making it up, if it really is just the same as chronic pain, or if chronic discomfort is something that exist but just something that hasn’t been looked into before. It’s just that that chronic discomfort and chronic pain feel very different to me. Maybe this is really about how I register pain, I honestly don’t know. But I think it’s something that needs to be looked into more.

Chronic discomfort for me, doesn’t involve pain as such. But to me it feels like you’re not physically sat in your body right, and there’s nothing you can do about it. Like no matter what you do you’re not in your body right. Like when your socks aren’t on properly, but you can’t pull them up. That feeling, but everywhere? I hope that king of makes sense.

Now I know how to register the pain, I know how to explain the pain. But the discomfort is something else. Something I find it hard to explain, even to myself, because it’s not pain, it’s almost worse. That’s why I want to read more about it, to understand it better, but I really can’t find anything.

All this said I didn’t spend a lot of time looking for stuff on chronic discomfort, because fatigue. But if anyone out there is better at research than me or just knows anything about chronic discomfort, I’d love to know more.

Starting regular medication.

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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 can’t get changed.

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So I got very wet from the rain walking the dogs this morning, and as I am unable to change I’ve spent the day very damp. Now that I’m on my way home, I’m starting to dry off a little.

In case this wasn’t clear, once I’m dressed in the morning I generally cannot get changed until the evening. There have been occasions where I have been able to get changed throughout the day, but as I have gotten older and changing has become more difficult these instances have become few and far between.

This is somewhat of a personal choice I suppose. I could have another call in the middle of the day, but this would limit what I would be able to do with my day, and I don’t want to do that. Either way I wouldn’t just be able to call carers back when I needed it, so hanging around for them in the day just doesn’t make sense to me.

So my freedom comes at the price of my comfort, and on most days like today, once I’m wet I stay wet. But hey, at least it isn’t pee. That my friends is what we call an incontinence joke.

But now I’m cold, like to the bone cold if you know that feeling. I’m very glad my day is nearly over.

All this is to say, as I loose the energy needed to write this post. If you see someone with spilt food on there clothes, which yes I also did today. Or wet clothes. Or just something that can’t easily be fixed within five seconds, just stay quiet about it. They may be aware and may not be able to fix the problem themselves. You hilighting it only brings more shame. Additionally wait another 10 if its raining a lot when its time to walk the dogs.

Functioning on little sleep

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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?

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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.

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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.

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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.