Tag: Chronic Fatigue

Chronic Discomfort

On By Katy DalyIn My Disability TruthLeave a comment

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.

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.

Today was odd.

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In some ways it was fun. I got to watch the new Doctor Who which was so great.

But I also feel a little guilty for today. I was supposed to go and see someone who said I didn’t have to go because it was really hot here. Even though they are the one who said it was okay I still feel guilty for not going. I just really didn’t want to go out today, and it wasn’t completely about the heat though that was part of it.

Sometimes I find it very difficult to leave the house, emotionally. I just really do not want to, and get tired of forcing myself to.

I feel like the house won today, and the relief I felt about not having to go out, also came with guilt. I feel like I should have wanted to go and see them, but I just didn’t.

Anyway, if you saw them, I hope you enjoyed the Nothern Lights, I was asleep. 😂

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.

Fatigue sucks.

On By Katy DalyIn My Disability TruthLeave a comment

Fatigue is a big problem for me at the minute. And I did the thing you shouldn’t do and googled, it’s going to get worse.

It’s really hard to get the motivation to do thins when I just think hey I’d rather be asleep than do that. And if I do massage to catch it where my brain is on board, it always seems like my body is on a different page.

There are many reasons why it can seem that is my body that makes the world inaccessible to me, and this is just one of them. I have to push myself against my own body.

I’ve tried to regulate my sleeping pattern and even if I can do so for a while, it never seems to stick. Something always happens, I sleep to much or not enough for one day and it completely throws me off.

I’m going to really struggle this week. I have a big day this week where I’ll be travelling all day, and I can already tell I’m going to be exhausted for it. Afterwards though it should help my brain and my body to reset.

So I guess this one’s just to say bare with those of us who seem like we never sleep or sleep to much. We’re trying. It annoys me to.