Chocolate

What snack would you eat right now?

At least that’s what I said even though it wasn’t really what I wanted. What I actually wanted wasn’t even food, but a lot of the time I don’t feel like the things I want are important enough for me to ask for. \

What I really wanted was for my little girls polar bear teddy to be moved so that it sits over her urn correctly. I don’t think really that’s too much for me to ask for, but I know that the person helping me will think that it is. So I felt I had to make up something more acceptable that I needed there help with, like the fact I wanted some chocolate.

That is one thing I’ve learnt after having a lifetime of help from others, people will judge you for the things you need help with. They might still do the things you ask them to do but they will be very strange about it, and if you ask for to many things that fall into the category, they will simply choose not to help you anymore.

When you need a lot of help from others, you have to have your life run by them. It all ultimately comes down to what they will actually do for you, if they say no, then you are stuck.

I don’t think people really understand what that is like until it happens to them. It is really hard to grasp what it is really like to have everything in your life controlled, and as a result at least in some way judged by other people.

It’s difficult to believe I have a right to have a say in anything in my life, when I know anything ultimately comes down to others. That is why I struggle when people ask me what I want in any situations, because it just feels like that ultimately doesn’t matter.

Anyway, as for now I have the chocolate, so I’m going to eat some now at least.

Discomfort

For reasons that I hope are clear if you’ve been following me for a while now, I’m a member of many different disability and chronic illnesses groups on social media. A common topic in both is chronic pain, but something I don’t see discussed is chronic discomfort.

In my experience this goes alongside chronic pain but is something that is distinctly different at least in my experience. But no one seems to talk about the difference, so it has me wondering if I’m making it up or just not phrasing it right?

It’s like sitting in my body doesn’t quite feel right. Like I always need to be moved a little bit, and I can never find that one spot I’m looking for. In itself that’s doesn’t hurt, I mean it does hurt, I do hurt but that feeling is different to me.

I don’t know maybe I’m talking rubbish. Maybe it’s the same thing. Maybe it’s because I’ve spent so much time in my chair recently. Who knows? Not me.

Reliance on technology

I am reliant on a lot of technology to live my life. One of the most important pieces of technology and reliant on is my wheelchair, but this can break like any other piece of technology can. At the minute I am dealing with a few different wheelchair related problems including footplates that are the wrong height, alongside cushions that are no longer functional and batteries that do not work properly.

When I went to have a the cushion looked at recently I was told that not only do I need a new cushion but my foot plates were the wrong height. If I’m honest, I was confused by that because I’ve had a foot plates at this height for many years. But although I use these chairs, I don’t know a lot about sitting in them correctly so I believe the professional who saw me at my appointment and allow them to fix what they saw as the issue. They were hired but now my feet no longer stay on the foot plates.

While waiting for the cushions to be replaced, I found it was causing too much of a problem for me that my feet would not stay on the foot plate anymore, so I contacted them for a solution. But as if that wasn’t enough of a problem while waiting for solution to these two issues, I developed a problem with my batteries.

Again in trying to be helpful, I did something I’ve done many times before, I picked up some prescriptions for others and took it to them. By the time I got to the house, which isn’t all that far from mine, I had very little battery left in my wheelchair. I had to get someone to walk me home to make sure I got there okay without my chair stopping like it often does when the batteries are really dead. The only way to tell when the batteries is on my wheelchair are going is when they no longer last the distance that they previously did. There’s no indicator on the chair, or any way to really predict the batteries going before they start to go.

This means I had to call the wheelchair services that provide maintenance to my chair and book an appointment for them to replace my batteries as soon as possible. This was something they were able to do quicker than the other repairs I am waiting on, both because batteries are obviously more important but also because they are standard and more easily replaceable than other parts of the chair. But it means I have to put my life on hold to some extent until the batteries are replaced. I have plans tomorrow for example, but I may not be able to follow through on them depending how well my battery wants to work between now and when it will be changed on Monday.

While some people might understand a little bit about what it is like to be reliant on technology in modern society, as tech technology needed a lot. You can’t really understand what it is like to need technology like those with disabilities often do unless you’re in that situation. Technology doesn’t just make things easier, when you’re disabled, it makes things possible.

It can make life difficult, as I promise you it will usually brake at the most inappropriate time for it to brake. But in reality, there’s no good time for something that you need so much to brake. You just have to learn to get by as best you can, and wait for it to be repaired. But I really wish I didn’t have to rely on technology sometimes, especially when it doesn’t work properly.

Hopefully I’ll get my batteries changed on Monday, and the other problems fixed as soon as possible. Then nothing will go wrong with my chair, and I can get on with my life without having to stop it for broken vital technology, for a good while. 

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.

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

If you wear glasses you are Disabled.

The Definition of a Disability is: a physical or mental condition that limits a person’s movements, senses, or activities.

Those who wear glasses have some form of limitation to there sight, they are technically disabled. It’s simply that society has accepted the mobility aid that they use, glasses.

This is interesting as it shows the way society has accepted some disabilities, in a way that doesn’t continue to exclude them. It is completely normal for someone to wear glasses. I wonder how people would react to disability if it was normalised this way.

One day I hope that all disabilities and disability aids are accepted the way that wearing glasses is. This will be the true inclusion of those with disabilities in society 

I have more I want to say on this. I might but as always I make no promises. This might help though if I don’t end up saying more.

Sometimes I get fixated.

Sometimes I get fixated on damage in my home or dirt I can’t clean or something like that. The only way I’ve found to distract myself from it when something new happens, is to go through the old marks and damage in my head so I feel better about the new thing being less important.

Currently it’s orange juice that I may or may not have spilled on the floor. I can’t actually tell from where I am. I’m reminding myself it’s not as bad as the marks on the wall.

This is the part of disability that you might not even consider. When someone is stuck in one position in the room.

Cyril controls more than I wish it did, but I’m trying.

If humans had taglines, what would yours be?

If I tell you that Cyril is the name I use to describe my cerebral palsy, this tagline should make sense.

Naming my cerebral palsy helped me to separate it from myself, and find who I am outside of my disability. But I still often feel trapped by my disability, though I’m trying to make the best of my life.

It’s hard living your life knowing that you will never get to live the life you feel like you should have had, and knowing there’s nothing I can do to get that life.

If I’m being completely honest with myself, I feel like my disability robbed me of a better life. And logically that’s just sad.

Sometimes all you can do in life is the best you can do, and that has to be enough, I guess.

Why do other people get a say in my life?

My life is a job for other people, and I understand I’m struggling with the reality of that right now.

I’m tired of other people thinking they get to judge how I live. But unfortunately, they do. That’s what happens when you need help. People get a saying in your life places they shouldn’t get. It’s not fair.

I really don’t want to deal with this. part of me attempted just to not answer the phone when it rings next. So that maybe I never have to deal with this.

I really wish people making these decisions, the people judging my life, understood what it felt like to have a random strangers do that to them.

This is making me not want to do anything, to never leave my room. But I still have things to do, because whether they like it or not, I still have a life.

I’m so tired of this. I’m tired of being disabled. Tired of being judged for being disabled. I’m just tired.