Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
As I write this I can feel the fatigue creeping in. I’ll be awake for minutes if that, though I’m not sure how long I’ll stay asleep for.
I have a heated blanket, it’s my favourite painkiller. Buy I am starting to overheat from having it on.
Sometimes it feels like I just can’t win.
I hope you get some rest wherever you are.
Are you more of a night or morning person?
After a fun, busy, but very cold day, I got home and took a nap. At the time of writing this, I’ve not been awake long. I was awake briefly for my care call, but I went almost straight back to sleep, so I don’t tend to count that.
I will probably be awake for several hours, which will annoying leave me feeling tired tomorrow, despite having slept fairly well.
Now last night I last quite well, so despite going out for a few hours, shouldn’t have been as tired as I was. But that’s fatigue for you. You don’t get to choose when you’re tired, it has almost no relation to whether you have slept or not.
It might be worth remembering that I’m always a little tired, I often say to people I was born tired. Occasionally I am so tired that I’m not able to function without a nap which usually lasts a few hours first. That was the position I found myself in tonight.
This is my best guess at what fatigue is for me, I refer to this as CP Tired, as I know this is tiredness that for me comes from my Cerebral Pasly. But as I’ve suffered from both Cerebral Pasly and this tiredness my whole life, there’s nothing I can pinpoint as a change and a distinctive development of fatigue. It’s just the way my life has always been, and will always be.
So I find this question hard to answer, given the fact I’m always tired in some way. I do have an early care call in the morning, but that is so I can be up and have the most choice and control over what I do with my day. It’s not actually because I like to be up early in the morning. I often end up going back to sleep for a few hours in my chair, depending on my plans for the day.
Based on what I’ve told you, I think I’m going to leave you to determine the answer to this one for me.
Do you think I’m more of a morning or a nice person?
The truth is I honestly don’t know.
What part of your routine do you always try to skip if you can?
Do I even have a routine?
I’m honestly not sure. I like to say I’m organised but I honestly feel like I’m pretending all of the time and I’m not actually that organised.
I would honestly skip anything that requires physical effort, which is pretty much anything when you think about it. That’s the joys of fatigue for you. I’m always tired.
But I try to do as much as I can on the important days, and to be honest I think that’s enough.
Like most things it’s only when I see how well other people can function over me, that I think the way that I function is not enough. But logically I know that means I just need to stop being bothered by what other people do and what they think about what I do.
I think I’m quite a busy person and to be honest I like my life that way. When it’s busy I don’t have the time to get too caught up in everything else. But some people might think that I’m not actually very busy when I explain to them what I do on a day to day basis.
I think the biggest part of this is because I don’t work, but this is not for lack of trying. Just because I don’t work doesn’t mean that I’m not busy. Living life gets very busy very quickly in my family.
And so when I can I like to take a day just to do as close to nothing as possible. Obviously my dogs still get walked but that’s the only reason I go out. The rest of the day is spent catching up on sleep. And maybe if I can find the energy and motivation, writing. That’s what today is.
So this is your reminder that if you catch people on a day where it seems like they’re doing nothing, they may still be busy. Busy resting. Busy getting on with life. Being busy means different things to different people.
Do lazy days make you feel rested or unproductive?
I’m writing this post at 6am and the reason I’m awake at 6am is because I fell asleep early. I fell asleep early, after sleeping a lot of the day. Thank you fatigue. But I guess I can’t exactly say it’s a lazy day because I did actually get everything done that I needed to do.
So a day that’s spent sleeping a lot can actually be quite a productive day for me at least. Though I usually do have to deal with my sleeping pattern being worse, but there are negatives to everything. Sleeping is often viewed as the ultimate expression of laziness, so I’m guessing from an outside perspective a day I spent sleeping is what you may view as a lazy day.
But the question is do I think a day where I’ve spent sleeping a lot is a day where I’ve been lazy? And the answer is no.
Maybe this is because I’m disabled, maybe it’s because I have to listen to my body more as a disabled person. Maybe it’s because I simply love a good nap. But I don’t think spending the day sleeping is being lazy or being unproductive, it’s doing what I need to do.
Now I do think laziness exists, or more accurately at least I can be lazy. To me laziness is when I have the full mental and physical energy, the spoons, to do something and I just can’t be bothered to do it. Not to be confused with when I don’t want to do something because I don’t have the spoons to do something.
I think a day spent sleeping is a good day. But this is only the case when I manage to get the things done that I need to do. As I did yesterday.
You could call this my own internalised ableism, but if I sleep instead of getting things done I do end up feeling guilty about it. But I don’t feel like I need to spend every day doing something to be productive.
So I guess this one is just to say that you should listen to your body, which I know is easier said than done. And do better than me, don’t feel guilty when listening to your body means you’re unable to do something that you were supposed to do.
It is 6am, and just my luck the fatigue is picking up again, when I need to be up in an hour, frustratingly. So I apologies if this post doesn’t make a lot of 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.
What is your favorite hobby or pastime?
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?
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.
What are your daily habits?
I’m not sure what classes as a daily habit. Is it writing, listening to music, sleeping? Do all of these things count I don’t know.
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.
My Inaccessible Life 