The middle of the night.

Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.

As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.

I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.

Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.

Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.

I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.

But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.

I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.

I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.

I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.

It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.

I went for a nap.

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.

I fell asleep mid-writing.

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.

I’m tired.

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.

Overheating and pain.

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.

Given the fact I just woke up, what do you think?

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’m sorry. It’s been a long day.

If you read my previous post you’ll know that I had plans for what today’s post was going to be. But I’m here to tell you those plans have now been forgotten.

I’m still up. I’m still out. My brother had a concert to go to, and the tickets were booked before he had a mobility aid that he now uses, and so the tickets aren’t accessible. He can manage without it with help, so I was left watching it tonight. Which is obviously fine. It’s just a very long day.

It meant that I have had to cancel my care in order to be out, and I have now been up for over 12 hours. Additionally I got wet in the rain this morning, and there’s no real way for me to get changed if I get wet in the day. That means I’ve been stuck slightly wet for most of the day, which isn’t great.

So I said it’s just been a long day.

Technically difficulties and I’m tired.

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.