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.
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.
Honestly, I’m not sure which of the two I enjoy more. I think right now because of Covid it’s probably sleeping, although I’m finding it difficult to sleep although I can do about that. And while I love to write I have to be in the mood for it. Much like with sleep it seems.
So I guess the takeaway from this at least for me, is that no matter how much you enjoy doing something you still have to be in the mood to actually do it. Maybe that’s just me and the way my body works, what do I know?
I got home about an hour ago from an incredibly long day. I am still not feeling great. Therfore this will be my post for the day. Hope you’re all well.
This morning my carers were late and so it left me alone with my girls. Waiting for my sister to come back something happened with them that I was unable to deal with alone.
Don’t worry they’re completely safe and my sister will be back soon.
But it got me thinking about all the things I can’t do for the girls. About how much of a better life they might have if they could be looked after by someone who was able to do more for them.
I love them. But I feel like I let them down by just existing.
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.
This is something I say often, as it gives me a very basic wag of explaining my disability.
But today I had a spurt of energy to be productive, you know the one. And it didn’t line up with my body’s ability to do what is physical requited of me to be productive. I hope that made sense. It did in my head.
Anyway, once again I’m just struggling with who I am, and what that makes me capable of. Specifically how that differs from what I want to do with my life.
Though these parts of myself do not match almost all of the time, it rarely bothers me. But when it does like it did today, it’s just hard for me to deal with.
Sometimes to even try feels like to much when toy don’t think your body will let you do it anyway.
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.
For a long time I struggled not blaming myself for my inaccess to the world. It was hard to believe I wasn’t the problem, when everyone was always making so clear that I was.
As I get older I go through periods of being busy and then free as I’m sure we all do. And every time I reach this quiet time from the business, I’m reminded that I no longer feel disabled. In all honesty, this makes me not want to go out a lot.
But I won’t let the ableism of society beat me. I won’t let run my life. I’m going to keep trying.
But no more for today. Today I think I’m just going to sleep.
My Inaccessible Life 