Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
I often say I’m always tired, or that I was born tired. I can always go for a nap.
Yesterday I slept all day on an off, meaning I couldn’t sleep at night. While I didn’t sleep all day today, I did sleep on and off. I then fell asleep early explaining how I’m awake in the middle of the night, so tomorrow is going to be difficult.
Fatigue sucks. No matter how much I sleep, which I can never seem to do at an appropriate time, I’m always tired.
Describe your most ideal day from beginning to end.
Sometimes I think I should answer this question differently to make myself seem more interesting or appealing. But honestly on as I am now, the less I can do in a day, the better. I just want to sleep.
Or at the very least fleeting.
Today I experienced comfort for a short while, and for the first time in a good while, nothing hurt. But it never seems to last, and it always passes to quickly.
You can’t stay in the same position forever, eventually you have to move. And when I move, the pain returns.
I didn’t want to move today, but I had to.
I’m now in bed, in less pain than I was, but because I moved the pain is still there.
Even when I get comfortable, I know it’s gone whenever I will move.
Comfort is fleeting.
List five things you do for fun.
I hope you’re able to write this list.
Remember it doesn’t matter what you for fun, just that you have something that you do for fun. Whatever that is, I’ve hope you managed to do that today.
If you pay that much attention to this blog and what I write, you may notice that occasionally backdate posts. Who says I don’t get to play a little bit with time.
I had to do it with it my last post, because I’ve just slept almost 12 hours, apart from being awake briefly when my carers came. This occasionally happens to me, and is more likely to happen when I haven’t been sleeping properly. It’s like my body needs to shut down physically for a while.
This time I was woken up by a not nice dream that I’m trying not to remember.
Occasionally I wake up well rested from these crashes. This is not one of those times. I feel a lot less fatigued but I still feel tired, like I could still do with a nap. But I always feel that way.
This time I’ve also woken up cold and uncomfortable. But there isn’t a lot I’m able to do about it. I kind of wish I was still asleep.
It’s a lie that you ever get used to the pain. I think sometimes you just forget it’s there. But sometimes it feels different, as I write this my arms are aching. And while it doesn’t hurt more, different pain throws you more than the pain that happens all the time.
But the electric blanket is helping. And I’ll be getting up in about half an hour, and getting on with my day. I hope you’re able to get on with yours and that you have a good one.
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.
That’s not strictly true, I have been sleeping, just not at what you might consider an appropriate time.
I’ve been sleeping a lot in the day and up most of the night. It’s what happens sometimes, my sleep pattern falls apart.
I find it really hard to leave the house, to get the desire to leave the house. I do go out to walk the dogs, it wouldn’t be fair to put this emotional state on my dogs, but that’s about it.
I come home from walking them, I watch TV and sleep a lot, on and off in the afternoon and evening. Then I’m up all night, sleep in the early morning. Till I get up to walk the dogs. And the pattern continues.
Part of me hopes this ends soon, that I can get back to normal. Part of me hopes I never will.
We’ll see what happens I guess.
So I don’t think I realise that I’m overwhelmed until I get overwhelmed if that makes sense.
Today I was supposed to go to a family lunch time thing that we do every week. But because other members of my family were there, my dad wouldn’t let me bring my dogs, which he is usually okay with. So I decided not to go and see everyone, I stayed home with my dogs instead.
I spent the day, with the dogs, sleeping. And it’s only when I slept most of the day, more than I thought I would. I realised how much I needed to sleep, how much I needed a few hours away from people. And it was lovely.
Take the day if you can and if you need it, to do what makes happy. Even if that’s just going for a nap with your dogs.
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.
What are your favorite physical activities or exercises?
I love a good nap, and to be honest I think most people feel the same.
The perk of having a physical disability is that you don’t put the same pressure of physicality on yourself that able bodied people do.
Often I see people push themselves into over exertion, doing something to keep themselves fit, because they think they need to.
I’m not talking about being healthy or doing what you love. Both of these things good things to do and can both involve physical activities. But it’s important to remember that these things mean different things to different people. That physical activity looks different for everyone.
Picking up a cup to drink a coffee it’s still physical act, and yes I’m saying that as a reminder to myself to drink the coffee next to me now. But don’t let anyone make you feel bad if this is all physical activity you can manage or even that you want to do.
It’s your life you’re living, not anyone else’s.
My Inaccessible Life 