Tag: Fatigue

I apologies for the mistakes in my last post.

On By Katy DalyIn My Disability TruthLeave a comment

It has since passed, but as I was writing my previous post I was experiencing a very high level of fatigue. While I am still tired now. I am no where near as tired as I was. I was barely able to keep my eyes open.

I often say that I was born tired. No matter how much I sleep I’m always tired. But occasionally it’s like I can’t move. The fatigue is awful. But luckily for me it passes.

Anyone this is just to say some posts you might have to bear with me. But do let me know if there’s any mistakes that stop it making sense.

I didn’t sleep last night.

On By Katy DalyIn My Disability TruthLeave a comment

As I write this I’m sat in my parents house. I didn’t sleep last night and the fatigue is starting to hit. I’m recording this out of interest to describe how I feel physically when I am this level of tired.

If I had slept last night I would l have referred to this as CP Tired, but as I didn’t sleep, it makes sense I’d be this tired.

I am physically feeling very shaky. Very aware of the energy it is taking for me to stay awake. I can feel myself trying not to fall asleep. I am achky in places I am not usually acky in namely my wrists and ankles.

Forgive any mistakes in this if I have the presence of mind I will fix any mistakes later.

So on Saturday night.

On By Katy DalyIn My Disability TruthLeave a comment

So as I sit here, trying to recover from covid, that makes it sound dramatic but please do not worry I’m doing alright, thankfully.

I’m thinking back to Saturday night, when I was trying to convince myself, I had the physical energy to eat, as I was hungry, and I couldn’t seem to find it. But with my life experience of cerebral palsy, it isn’t all that unique that I don’t have the physical energy to eat on the odd occasion, this is what I have referred to in the past as CP tired. In these situations, my mum has fed me in the past. So, I actually spent the night thinking about my mum, and how much I miss her. I probably only ate anything that night because I know that’s what she would want me to do.

But having this low level of energy never registered in my head as something I should be concerend about, as I say, this happens to me. And this got me thinking about how hard it can be to spot symtoms of something, when you’re chronically ill or disabled. Here I very easily colud have been overshadowing my covid symtoms as part of my cerebral palsy. By this I mean attributing the systoms I was experiencing to the wrong thing.

Luckily for me, the symptom that I was overshadowing was simply exhaustion, and this is not the most dangerous system to do that with. Though I would likely have figured out I had covid earlier without cerebral palsy. But there are many stories of people being in a lot of dangerous because of shadowing their own symptom.

So I want to take this oportunity to remind anyone reading this who is disabled and chronically ill to pay extra attention to when you feel different, and do what you can to look after yourself.

It’s okay to be wrong about something else being wrong with you, it can be incredibly dangerous to miss what could be wrong with because you don’t want to be wrong about something being wrong.

The version of this, in which medical professionals overlook symtoms is called diagnostic overshadowing. If you’re chronically ill or disabled, or there is a chance you will be spending a lot of time in hospital, it might be something worth looking into. It is essentially where a doctor or other medical professional attributes an existing medical condition to being the reason for your systoms, which results them in not actually investigating the symtoms someone is experiencing.

This happened to me once as a teenager when a doctor decided that the numbness and tingling, I was feeling in my hands and feet were anxiety, and of course I have anxiety because I’m disabled. *Insert after event eye role*

Though they were probably correct, which has only become evident because while I see occasionally experience those symptoms, I don’t experience any other symptoms. However, I still deserved to have my symptoms investigated properly, just in case there was something else going on.

Myself.

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

What details of your life could you pay more attention to?

I’m always so busy. My family is complex and there’s almost always something that needs doing. I am definitely trreated with equity in the sense that just like any other member of my family, I’m expected to do what I can to help out where I can. But this is often a lot, and I still have a condition that causes fatigue.

I am often tired, and frequently exhausted. I have said more than once that I think I was born tired. I get maybe an hour or two, if I’m lucky of not feeling tired. This is providing I get a good solid amount of sleep, which doesn’t happen to often.

However often sprinkled in there I get to spend time with people I care about, as I did tonight. But that takes energy as well, when sometimes I just want to sleep.

I have various things to do every day for the next weeks, as well as several upcoming appointments.

Sometimes I feel like I’m more busy when I’m not at University, but you know that’s just life. And I’m always so tired. In all honesty I just want to sleep a little more, but don’t we all?

Hopefully I am able to get on this next course, which will mean while I don’t get to sleep anymore, I will be doing something for me. And I think this counts as paying more attention to myself and what I need.

Out past curfew.

On By Katy DalyIn BlogLeave a comment

Now don’t get me wrong I don’t technically have a curfew however the care that I need usually means I have to be home for a certain time. At least as I begin writing this I am sat on the bus, several hours after this time. Though by the time I finish this post I will likely be home. As my journey on the bus is short so I don’t think I will have the time to finish the post before I get off.

I do apologise as I finish writing this it is in fact the next day. That is the cost of staying up late. I slept 11hours and woke up tired. Not forgetting that ih the middle of this I had my care.

It’s odd getting to be our when you want to be, especially when your body isn’t used to being out. Your brain is like woo, we’re out being an adult, this is awesome. Your body I’d like when do we get to go to bed?

My body is used to the curfew pushed on to me. This makes it hard fo brake even when I want to, despite never wanting it in the first place. This makes it seem like I choose the curfew even though I didn’t. Then it can be even harder to argue not needing it. Though in all honesty while I don’t need or want the curfew because I have carers I will always have it.

When I have the time I don’t have the energy and when I have the energy I don’t have the time.

On By Katy DalyIn My Disability TruthLeave a comment

As I write this I’m sat in my parents house, trying not to fall asleep as the fatigue hits. I have a free afternoon and evening because my sister is out and I have cancelled my carers call to avoid things being difficult with the dogs.

I have no university work as I beat a deadline and so have to give it time after the date before I know if I’ve got on to the course I have applied for.

In other words I have the time to write or play the Sims when I go home, several hours of it in fact. But I am most likely going to end up napping for a couple of hours at least.

If I have the time, energy or motivation when I wake up I will do something, maybe.

Honestly I just wish all these different parts that I keep to function and do the things I enjoy, would line up a little more.

A fatigue nap

On By Katy DalyIn My Disability TruthLeave a comment

So today, someone came to replace the wheels on my chair, and that meant I had to get out of it and in to bed. Due to the temperature being too hot to walk the dogs I knew I would not be going out, so decided that I wanted to stay in bed.

So, I took what I planned to be a small nap, before I was going to get into doing some work. And I was up 4 hours late. Well, I woke up prior to that in pain, and went back to sleep. Later on, I was woken up to help with something. But that was 4 hours later. While I was fatigued enough to apparently take such a long accidental nap, I was not fatigued enough to be unable to control when I fall asleep, as sometimes is this case. This is what I myself call CP Tired and is one way that fatigue affects me. But the way it affected me today makes me more annoyed, as I chose to go to sleep so I feel to blame for essentially sleeping the day. Despite logically knowing that I wouldn’t have chosen to take this nap if I knew that it would have lasted as long as it did.

While I know that it is clearly obvious that I needed to sleep, I hate when that happens. It ruined what I had planned to do today.

It means that I may end up being up late tonight, which means I will probably be even more tired tomorrow.

Anyway, now that I’ve written this post. I’m going to try and get back to doing the work that I should have been doing today, instead of sleeping.

I don’t think that I do.

On By Katy DalyIn Writing Prompts2 Comments

How do you waste the most time every day?

There are lots of things that I do day to day that I’m sure some would consider a waste of time.

I spend a lot of time scrolling and posting on different social media apps. I sleep a lot. I watch a lot of TV. On good days I write a lot.

Some if not all of these things that I do can be seen as a waste of time, particularly the sleeping. But they are all things I enjoy doing, therefore I don’t think that they are. The sleeping is the one that can cause me the most problems, it can make those around me think that I am lazy or that I waste time. But I have somewhat explained this in my previous post.

There are other things I do, like looking for work or writing more professional pieces which I’m sure fit the realm of being productive. And as is usually always the way doing these things is distinctly less enjoyable, but as an adult whatever that may mean, I attempt to do them anyway.

But I spend more time doing the things I enjoy. Not least because I have the time, if not the energy, due to my lack of employment. Some would see this as being lucky, to have the free time, I tend to disagree however as I want to work. And I am trying to find work that fits into my life and the control I have of it, even if this means I have less energy to do the things I want.

Anyway, I got a little distracted there, I apologies. This post is really intended to say that as long as you enjoy doing something it is not a waste of time. No matter what you spend your time doing, or what others may tell you about what you spend your time doing.

Try to not feel bad for giving my body what it needs.

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

How do you practice self-care?

Fatigue is a difficult concept to explain to those who have never experienced it. For me it means that no matter how much I have slept I will feel very tired a short time later.

Last night I slept at least 9hrs, that’s a lot more than I usually get. I woke up feeling refreshed about 90 minutes ago. And about 10 minutes ago I started to feel extremely tired again.

I have places to be today so I can’t just go for a nap. But starting to do something will probably wake me up again, hopefully.

So while I can’t get some more sleep right now, I can not feel bad about the fact I would like to.

Sometimes it is easy to fall into the trap of what I wish my body was capable of. Today I’m going to do the best I can at accepting my own capabilities and recognise I am not to blame for any limitations.

I know this may not seem like a lot but for me it is a big deal. I’m quite good at faking being okay with my disability. Those that (think they) know me, are often surprised to learn that I don’t accept things as well as they think I do.

Being okay is not as easy as we make it look sometimes is it?

And later on, I will definitely be taking a good nap I promise.

I hope you do whatever you do to practice your own self-care today.

Home Alone

On By Katy DalyIn My Disability TruthLeave a comment

So I’m home alone while the person I live with does some errands. I don’t want to seem like I can’t be home alone, because I can be. That is until something needs doing.

One of my beautiful little doggies loves to cause problems and she might have just been doing so in the other bedroom. The personal lives suggested that I go and check it out, when I told them this. However it’s not that simple for me, simply going into the other room requires both a lot of steps and physical effort on my part. She’s also now also asleep next to me therefore I know she is not causing problems right now, and if I move to go and find out what problems she may have caused it will undoubtedly wake her up and therefore she may cause more problems. Add to this the fact that I am unlikely to be able to deal with any problems that she may have already caused anyway, and due to a broken door I am unable to stop her causing more problems.

Sometimes able bodied people or in this case people that are more able-bodied than me. Will ask things of me without considering or being aware of the steps involved specifically for me in what they are asking. They may not realise that they’re extra steps involved in doing something as a disabled person.

If I were to do what they have asked of me I would have to take care to put the things on my lap on to my bed properly, like my blanket and phone. As there are many steps involved in me trying to pick them up again should they fall on the floor, if I can do it at all. Next I have to struggle to open my own room door followed by the other room door that I need to go in. This will take a good five minutes just to get me into the other room at least, which is longer than it will actually take me to check if there is a mess or not. Like I said earlier even if there is a mess I will probably not be able to do anything about it.

So I guess this one is just a reminder that sometimes when you have disabled people to do simple things for you they aren’t quite as simple as you may think they are. While they may want very much to help you the energy required may not be something they are able to spare for you or to get the task done.

It’s not just that I have less energy than many other non-disabled people come out but the fact that doing something will actually cost me more energy than it would likely cost a non-disabled person to do it.

To any disabled or chronically ill people reading this, it is ok to make the best choice for you to conserve your energy and get the most out of your day Whatever this might look like for you. Remember it makes you smart and pragmatic in dealing with a situation that has components others may not be aware of. Don’t let their judgment of your actions dictate not doing what is best for you.

This post links to the idea of something known as Spoon Theory. Which provides a way of explaining an understanding how much energy disabled and chronically ill people have and maybe able to use or may use doing a certain task. This is definitely something you should look into if you are interested and I’ve never heard of it before. It is likely to be something I write about again as it is very relevant to me.