Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Problems you only have when both you and your dog are incontinent, I couldn’t work out which one of us had wet the bed.
Sometimes you have to laugh at a situation. Even though I’m going to be stuck in this wet bed until the morning. She’s my baby girl and I wouldn’t change her for the world.
I’m sitting here unable to sleep because I need help but I cannot get that help until the morning.
When a key part of your independence is needing help from others, you have to wait till they’re ready to help you, to be independent. So it can feel like you have zero independence at all.
Now I don’t have the emotional ability right now to argue how I’m still independent despite needing help and others are just a tool to get me what I need. I’m really struggling right now I feel so broken.
I tell myself I’m an independent person, but right now I’m not feeling that independent. I feel like a child who needs help with everything.
There was going to be more thought into this post when I started it. But I think the lack of sleep from an incontinence incident that I’m stuck waiting for help with is getting to me.
I don’t wish I could walk, it’s all the other things I can’t do because of my disability that get to me honestly. Like all the help I need. Like having to wait for others to help me. Not getting to do what I want when I want to do it.
It’s just hard right now.
I’m writing this post at 2am the following day. It will be backdated.
I woke up after sleeping for 7 hour, still tired, in a wet bed. Incontinence sucks, let’s just leave it at that.
I’ve slept so much recently and it hasn’t made me any less tired and that just makes me sad. Fatigue is an overlooked problem in society. People thinking being tired isn’t that bad but honestly it’s hard to deal with.
Struggling now as I know I’m not going to be able to shower tomorrow. And I will definitely be tired all day today, even more so because I woke up at 2am.
So I got very wet from the rain walking the dogs this morning, and as I am unable to change I’ve spent the day very damp. Now that I’m on my way home, I’m starting to dry off a little.
In case this wasn’t clear, once I’m dressed in the morning I generally cannot get changed until the evening. There have been occasions where I have been able to get changed throughout the day, but as I have gotten older and changing has become more difficult these instances have become few and far between.
This is somewhat of a personal choice I suppose. I could have another call in the middle of the day, but this would limit what I would be able to do with my day, and I don’t want to do that. Either way I wouldn’t just be able to call carers back when I needed it, so hanging around for them in the day just doesn’t make sense to me.
So my freedom comes at the price of my comfort, and on most days like today, once I’m wet I stay wet. But hey, at least it isn’t pee. That my friends is what we call an incontinence joke.
But now I’m cold, like to the bone cold if you know that feeling. I’m very glad my day is nearly over.
All this is to say, as I loose the energy needed to write this post. If you see someone with spilt food on there clothes, which yes I also did today. Or wet clothes. Or just something that can’t easily be fixed within five seconds, just stay quiet about it. They may be aware and may not be able to fix the problem themselves. You hilighting it only brings more shame. Additionally wait another 10 if its raining a lot when its time to walk the dogs.
I shouldn’t complain really because thankfully I’ve had help to fix it. But I had to pee on myself today, of all days.
I don’t think I can explain how much this artist means to me. How much it means for me to able to see them.
They were the exception that proved the rule. They were the ones I was willing to suffer in an inaccessible world just to be able to see.
Your music is life.
Thank you.
I’ve had a rough day emotionally due to my disability today.
My carers didn’t clean me properly and admitted as much this morning. I then couldn’t find something I was looking for which really weighed on me as I couldn’t look for it myself.
Sometimes the things you deal with on a daily basis can just get to you. Today is ond of those days.
I’m supposed to shower this evening and the carers pointed it out, and now I really don’t want to.
Well at least if you’re me.
Today I lost a bottle of pee. A combination of not wanting to have a bag attached to me constantly, struggling with intricate physical activities and becoming easily distracted. Mean that this isn’t actually the first time this has happened to me.
So I guess this one is short and sweet, because I am tired, and a warning not to drink random bottles of liquids that you find in my house or on the street. If you need that warning.
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.
Incontinence can be a real treat if you know what I mean. And sometimes I can be incredible unlucky and have issue multiple days in a row, which unfortunately creates a lot of washing, for obvious reasons.
Now I’m not the one that does my washing. In theory I could do some of it, with our current set up. But I would not be able to do a full load of washing, this is currently completely impossible for me to do, due to inaccessibility in my house.
However, even if my house is more accessible in this area, it doesn’t mean that I would be able to complete a full load of washing. I don’t have a physical energy and strength required to do so on a regular basis. And unfortunately, I definitely do not have the strength and energy to keep up with the washing that I produce.
What I’m saying, is that regardless of my set up, I would always be relying on someone else to do my washing. Which leads me to the same problem, I have with needing to be reliant on others to do things for me. I’m relying on them doing it the way they’re going to do it. And I can’t really complain about it.
This is a common occurrence for anyone that is regularly relying on others for help. If you get lucky, you are sometimes able to ask people to do things a certain way for you. But the chances of this happening with regular everyday tasks is unlikely and definitely not possible for me. It actually risks me having any help at all. If I argued every time something wasn’t done the way I wanted to.
Sometimes you have to pick your battles. When you need a lot of help you have to pick your battles a lot of the time.
To anyone that doesn’t need a lot help, this might sound horrible and ungrateful. And in all honesty, I understand where you’re coming from with this opinion. But I have to say you’re wrong.
When you need a lot of help the only way you can get any say or control in your life is by specifying questioning how that help is done. Can you imagine if you didn’t get to say anything that goes on in your life? How difficult that would be to deal with emotionally. That’s what people need help a lot of the time, myself included, are stuck dealing with.
It’s a balance of control, and gratefulness. And the gratefulness gets old.
It’s not that I’m not grateful, it’s the being grateful all the time it gets old quickly. h
I hope you understand where I’m coming from and it doesn’t sound too horrible.
For me feeling ill is a weird one, because it feels like it changes nothing for me and everything for me at the same time.
I don’t feel a lot worse than I normally do, but I’m just ill in ways that are difficult to deal with.
Put it this way, no one talks about incontinence and sickness plans until it’s to late, not even me.
My Inaccessible Life 