What’s the most fun way to exercise?
Honestly I hate exercise.
I just don’t have the energy for it. I would rather take a nap.
Moving hurts. Why would I do more of it than absolutely necessary.
Tag: Chronic Pain
I can’t fix it.
I’m sat wrong in my chair today and I can’t fix it. There’s a bar under cushion which for some reason is digging into both my legs.
New pain is different. While this is pain and discomfort I’ve had before, it’s not what I’m used to every day, so it’s really throwing me.
I’m just going to have to deal with it today. I just hate it.
Comfort.
Sometimes if I’m lucky I’m able to get comfortable, for the record now is not one of those times. That said in the grand scheme of things I’ve been a lot worse.
But I know that at some point I’m going to have to change the position I’m in, and I can tell that’s going to hurt. I’m really not looking forward to doing it. So much so that I’m debating sleeping in the position I’m currently in, just to avoid moving.
Chronic pain sucks. The lack of control in my life sucks. But mostly right now my legs suck.
Bad pain day.
Can’t type.
Not in a position to use voice to text.
Sorry
Sometimes it feels like comfort is inaccessibility to me.
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.
Somewhere else to sit.
So, as a wheelchair user, I only ever sit in my own wheelchair or on my bed. However, I was recently given another kind of chair for me to sit in, which sits me in a different position.
Prior to having this chair, if I wanted to get out of my wheelchair I would get in my bed and stay there. My bed was the only other place I was able to sit, and once I was in it, I struggled to see the point of going through all that effort of getting out again. I also didn’t want to put the pressure of transferring me, which can be a difficult task, needlessly on those around me.
This chair gives me somewhere else to sit, that’s easier to transfer to. I will hopefully give me a little bit more of my physical mobility back and be generally more comfortable, simply from spending more time sitting in a different position.
Using this chair is something that it will take time getting used to. I am also aware that there will likely be a point in the future where I have to make a conscious effort to sit in the chair, but I’ve done well so far. That said I will not be able to sit in it tomorrow, as I have places to go so I won’t have the time. I haven’t been told I need to sit in it any particularly length of time, so we’ll just have to see how it goes.
New equipment and / or mobility aids can take time to get used to, and they should be worth it, I hope. So please stick with the things you need to help you if they’re difficult in the beginning. Things should get easier, and I am hopeful that sitting in this chair will.
Below is a picture of me sat in this chair with my dogs on my knee, because of course they had to try the chair out with me as well.
Cacoon
As I write this, I am underneath two blankets, one is heated the other is not, the nonheated one is over my head.
The heated blanket under the quilt helps to warm me faster. It gets pretty hot under here. But the heat helps enormously with pain, after being out in the cold.
I have not long gotten back after an over night trip, which has required me both to sleep in my wheelchair and to not get changed for more than 24 hours. Rail replacement buses and the joys of travelling on a Sunday, were also part of the, adventure.
I plan to write more about this in a future post, because it’s been an experience, as it usually is. But right now, I need to try to chill for an hour or so until the carers come and I can get into bed and properly relax. I just don’t have the energy, unsurprisingly, to go into detail about all this right now.
My disability doesn’t care that I have things going on.
Tonight I’m going to a family party, I have mixed feelings about this for a varsity of reasons.
It’s going to involve me spending the night in my wheelchair and I’m honestly not looking forward to that. But I swear it feels like my body knows I’ll be doing that. My legs are hurting already, and I’m not even in my chair yet.
I’m also hoping that I can poo within the next hour, because if I don’t anything I do after that I’ll be stuck in for more than 24 hours. The joys of incontinence.
The next 24 hours of my life, are going to be as uncomfortable and rough as they are fun.
I’ve got to use ramps that scare me, sleep in my wheelchair, where the same clothes. And I know I’m going to be in my pain.
Just because something will be worth it, doesn’t mean its going to be easy.
Part of me can’t wait to come home to my girls honestly, and I haven’t even left yet.
I crashed
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.
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.
My Inaccessible Life 