Shower night.

Showers are supposed to be relaxing apparently, though they don’t feel that way to me.

Tonight I had to shower and unfortunately I ended up getting injured. That’s not really what most people think of when they have a shower. But it happens and worst of all I didn’t come out of there completely clean. I’m difficult to clean and the situation in which I have to shower makes it difficult. So to be honest I don’t like to do it often. You can see why when you understand that it’s usually a painful process. And that’s not counting nights like tonight where I ended up getting injured.

At most I’m able to shower three times a week, this is what my care package allows. But if I’m being honest even that’s too much for me. I generally only shower once a week, sometimes once every two weeks. Now don’t worry I don’t smell, unless my incontinence has been having fun, because the carers wash me daily. Whether they wash me properly is another problem. But generally it’s not so bad only showering once a week. It keeps me clean enough I think.

All this is to say that doing what’s social expected can be draining physically and emotionally, even when you have complete help to do it. So whatever you can manage is enough.

Ignore anyone else that tells you otherwise, they’re not living your life with your situation and you’re doing your best.

And yes I’m reminding myself of this as well.

You will be in the way.

The reality of being disabled, and living in an inaccessible world, is there are something situations where you’ll just be in the way.

One of these is other people’s medical situations. When you want to help, you can’t. And because you still need help regardless of what is going on in other people’s life, it’s easy to feel like even more of a burden.

This post was supposed to be longer, was supposed to be about me saying that if you’ve felt this way it’s not true. But given I feel like this at the minute it’s hard for me to give confidence I don’t have to others.

Just know that despite how you feel it’s not your fault. And I know that doesn’t change the situation, but I hope that it makes you feel that little bit better.

Learning Routes.

Due to a lot of the world around me being massively inaccessible, I almost always learn specific routes when I travel in well known areas. This is something now do without thinking because I’m so used to doing it, and I often don’t realise I’ve done it until I route I take has to change for some reason.

I only have to do a regular route a few times before I find ways that are comfortable to me. These are ways that are often so specific, they include travelling on a specific side of the road. I’ve even missed shops that are on the other side of the road to the route I’m taking, because I’m so focused on the way I have learnt to go.

When I have to change a route it can actually be quite scary and sometimes disorienting. One reason for this can be because I don’t know the condition of the pavements I will be on, or where drop curbs are. Sometimes I have to just change curbs that are new to me, because I can’t always tell how big a drop is going to be when I’m on the pavement. And as I can’t always see exactly where my wheels are, sometimes I hit pot holes, that I was unaware of previously.

To put it simply, I have to pay a lot more attention and take more risks when I travel on routes that are unfamiliar to me, so I obviously don’t like to do this.

Now I am able to manage better than some, when changing routes, despite my difficulties. For some being able to follow specific routes that they have learnt is more important than it is for me.

The point of this post is to hopefully remind anyone reading it that sometimes people have learnt routes for specific reasons, and they can’t just change them. Some obstructions like road works are unavoidable, what I mean by that is they require the say of the council not individuals to prevent. But individual pavement obstructions, such as where you park your car, is a different story.

It is worth remembering that people can’t just change routes. They can’t always just cross over to the other side of the road, to pass the obstruction you create.

So have a little consideration for where you park or leave things on the pavement. Just remember you may be blocking a path that is someone’s only way of travelling somewhere independently.

I am aware that this post may be considered slightly ironic given my current situation which makes travel difficult. But as I’ve had to explain this recently to others, after sharing pavement obstructions by hedges and vehicles, I thought it was worth also going over here as well.

The heat is really messing with me.

So at the minute where I am it’s very hot. And the biggest pain killer I use is heat, specifically a heated blanket. But due to the heat I am unable to use it as I would, without sweating so much.

This means that I’m in more pain than I’m used to. And when you have chronic pain a change in your pain can be really difficult to deal with.

It’s really throwing me off honestly. On top of the not being able to sit in my wheelchair issue due to the cushion. I really feel like my condition is controlling me lately, rather than the other way around. It’s very frustrating.

Sometimes you have to compromise

It is the norm that many of the places in society are inaccessible to me, that is the result of systemic ableism. Both societies view of disability when they build buildings and business owners view when they find places for their businesses. It’s just life for me, and many others, unfortunately.

As I rule I try not to go to inaccessible businesses. This is both because of the obvious reality that the businesses simply aren’t accessible to me, but also because I do not want to fund businesses that are inaccessible. I firmly believe that those with inaccessible businesses make the decision to have an inaccessible business. Whether intentionally or unintentionally, sometimes they just haven’t thought. But I still hold them responsible for that, hence why I try not to fund them.

But sometimes needs must.

And while it annoys me, I’ve spent so long looking and trying different dog groomers, for some reason they never stick. I can say the same about cleaners, but that’s a different story. I got tired of paying the extra money for a groomer with a van to come to my home once, then to be let down when I need them to come again. I care to much about my babies to let them suffer because of my disability, and this groomer is a very good distance from my home.

So the fact I can’t actually get in, seems like a very small problem, given they were also willing to work with me. While the fact I have to compromise and be served from the street irritates me. Sometimes you just need to do what you need to do to get the service you need.

She does look lovely, and it’s Immy’s turn on Monday, and all being well I will stick with them. I can make it work, it just really annoys me that I have to be the one to make it work. It’s always me compromising.

To business owners out there who may stumble across my post, make the right choices and use accessible premises. It’s the right thing to do.

Discomfort.

It’s a common thing when you’re me. I don’t know what’s worse knowing the cause and not knowing there isn’t a fix or knowing the cause and knowing the fix but not being able to fix it.

It’s got to be knowing there is a way to fix it and not being able to do it yourself.

I’m waiting for the cushion to be fixed on my chair, it can take up to 6 months just for the appointment, who knows how long to actually fix it. So that’s (at least) 6 months of extra discomfort, often and eventual pain, with a solution I’m stuck waiting for.

Don’t get me wrong I know I’m luckier than some, to get this eventually and for free. But its still hard.

Discomfort can be more difficult than pain for me. The pain I am used to, it’s my normal. But the discomfort is new, and I don’t know how to deal with that. It’s going to be rough

Today is the last day of Disability Pride Month

And I had to backdate this post due to having a bad day with my disability yesterday. I literally spent the day crying over something very minor due to my disability. So this seems like a good time to share it.

Image Description: A tweet from @RebelWheelsNYC the text reads “Disability pride is not about loving your symptoms 24/7 or even at all. It’s rejecting the ableist that they make you inferior. But also in the face of system #ableism, it’s reminding yourself as needed that the problem is the system/oppression, not you #disabilityprideMonth

Lost and not found.

I know I’ve written about this one before but it’s really bugging me again. And in true deflecting me style it’s not even the biggest problem I have to deal with now but we’re going with it anyway.

I think I’ve lost a bottle of pee.

Now in my house that’s not as stranger sentence as it might seem. Given I use a catheter to empty my bladder into a plastic bottle. I have been known to loose said bottle of pee in different areas, both in and outside the house. Now this post is less about the hottie of pee and more about the fact that I’m unable to look for it myself.

Now because I can’t look for this myself I always feel like it hasn’t been looked for properly. Years of mistrust slowly creeping there. And there’s very little I’m able to do about the entire situation, that in itself is the most frustrating part. If I could look myself, I didn’t find it, I know I would’ve tried my hardest. I can’t know that for certain of other people.

Being disabled as essentially having trust people throughout your life, at least for me. You don’t get a choice about needing their help, and you need it whether you trust them or not.

Needing help for everything.

I’m just tired of it, of all the little things I have to sort out for someone else to do just because I can’t do it myself. And for having to pay for those things to be done.

I just wish I didn’t need so much help, I wish I could do what I want to when I want to. I wish I could be in control of my own life. Sometimes it really gets to me.

Fatigue sucks.

so yesterday (Today, because this will be a backdated post) I went out having been awake for more than 12 hours. By the time I was able to sleep, I had been awake for more than 24 hours.
This is partly my own fault as a stayed up all night, but I just couldn’t get to sleep. But I found managing to fall asleep, I woke up this morning having slept 12 hours.
Here it gets a bit timey whimey because I will be talking about the future in terms of when this is posted.
But I’m already tired, as I write this, even though I’ve slept 12 hours, and that’s just frustrating. I’m always tired. I usually more able to function if I have slept, but I’m still tired. And to be honest, it gets annoying.
I have chronic fatigue associated with my cerebral palsy, and it doesn’t seem to be something that is locked into our recognise as much. My tiredness is often blamed on my lack of sleep, and that Isn’t it helped by my poor sleeping pattern. They often think the fact I’m always tired is my own fault just because people don’t know better.
Anyway, I’m going go take a nap.