Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
What was the last thing you did for play or fun?
It might sound boring to you, but as someone with fatigue, I love a good restful nap.
Unfortunately, I don’t wake up from all of the naps I take feeling well rested, but the ones I do are the best. Even though a few hours later I know the fatigue will kick back in again. The short time I have the energy to do more than just about function is nice.
This is your reminder to not let anyone tell you what counts as fun. And to nap whenever you can.
The frustrating thing about fatigue is the way it seems to hit me out of nowhere. Sure I was tired yesterday, but that’s not unusual because I’m always tired. I’ve said it before I’m pretty sure I was born tired.
But the fatigue is like my tiredness ratchets up by 10 extremely suddenly. Any plans I had to do anything go out of the window.
Hopefully I will get the post I wanted to do last night finished today, but as always I make no promises. And right now I’m going back to sleep.
There was yet again, many things I wanted to post about today. But fatigue decided to beat me as it often does.
I know that I shared on hear a post recently to be honest with you I think it was yesterday, but I’m not sure about accessibility in Doctor Who. and the one thing I can bring myself to write about right now, is that again.
I think it shocked me how much I’ve had to fight people on this ramp being needed in the Tardis. The excuse for why it’s not as probably an unusual one. they say that given the tardis is always adapting, it should be able to adapt not to need a ramp. they’re overlooking the symbolisation of having the ramp present, whether it technically would be needed or not. And just so you know it is needed.
That’s all I can really say on this one. I apologies for the sporadic nature of this post, but I need to go back to bed.
What’s your favorite cartoon?
Actually doing what you want to is hard. Any person in the arts will tell you that.
As much as I have to write, as much as I love to express myself. a lot of the time what I want to say, never leaves my mind. The only person I can really be annoyed with about this is me.
As I write this, it is almost 5 am. And I’m actually using voice to text, it took me longer than it should’ve done not think of doing this, as cheating in someway.
Hello again, internalised ableism. I wish it was longer between our meetings.
There’s I really important post I want to share. But I’m annoyed with myself at not having the emotional energy to share it at 5am on a Saturday morning. How bad is that?
Does anyone remember watching cartoons on a Saturday morning? I think we need to bring that back.
Anyway, I can’t sleep because I fell asleep to early, so really, it’s my own fault. I knew it was a bad idea to go to sleep when I did, but sometimes fatigue just wins.
I had a world wind of a day yesterday, and I want to share some parts of it, well one particular part. But I can’t bring myself to write that post, for, well reasons. But obviously I can write because I’m writing this post, about wishing I could write that post.
Maybe it’s because the post I want to write feels so important, that I’m worried I’ll never be able to do myself justice with it. I just don’t know really.
But anyway, my favourite cartoon is Bob‘s Burgers. I wish I could explain why but I don’t really know. I love the way it’s written, the stories it tells, the inclusion, the escapism, the nonsense, all of it.
If you haven’t watched it, you definitely should. I know it’s shown randomly on some channels, but if you have Disney+, it’s mostly on there, apart from the season, which unfortunately I’m still still waiting to see.
I posted today in a fan group for the show, asking for similar shows to watch, as I’m almost always watching Bob burgers on repeat and I just wanted to see what else was out there. I got some lovely responses and some new shows to try. But if you have any recommendations, do let me know.
I should try to get some sleep, there is a possibility that I have a long day today, last-minute plans and all that. I don’t make them often as being disabled requires a lot of planning and last-minute plans are kind of the opposite of that. But I have options, so I’ll see how the day goes.
Either way, I have to be up in less than two hours.
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.
I started writing the post I wanted to write for today, then all of the energy I had to do so, left me. This is what you’ll have to take for now. Fatigue. I hate you.
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.
If it wasn’t clear from any changes that you might be seeing on this blog at the minute, I’m trying to sort out Menus and subcategories, namely how to put subcategories in to drop down menus. I’m struggling to do this as the instructions I have found and the directions I have been given don’t seem to match up. So if anyone knows how to do this I would be grateful.
Additionally, as I sit here trying to figure all this out, and writing the post about it, I can feel the fatigue set in, so I think I’m going for a nap.
If anyone reading this, knows how to do what I am trying to do, or is able to guide me in any way, your help would be greatly appreciated.
I’ll get back to you, and this, after a nap.
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.
My Inaccessible Life 