Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
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.
Being disabled can be about giving up more than just the obvious freedoms of life. Sometimes you have to give up so those that care for you can have the freedom, they deserve as well.
Tonight and tomorrow night, the person that cares for me, has plans to go out. so they’re able to do what they want. I’ve had to cancel my cares calls for both of these nights. this means spending 24 hours without getting changed for two days in a row. I will be able to get changed in the morning however.
If I didn’t cancel these calls, then she wouldn’t be able to go out, it’s not fair on her if she never gets some fun.
To be fair, the reason that I’ve had to cancel, my call is more about my babies than me. I struggle to look after the dogs on my own for Carer visits. this is because they need to be shut away for the carers to do their job, and I can’t do this very easily on my own, particularly with my larger dog. I can have them away in advance of the call, but she wanted to go out early which would mean and them being shut away for hours, and then hours after the call until she arrived home again. This course isn’t fair. So I chose to cancel my call instead.
They’re worth it. I don’t regret giving up my call. But it does make me uncomfortable. I can see why some people would question why I would have dogs if they make things this complicated for me. But nights like this don’t happen often. And I would much rather have them than not. They’re my world.
Sometimes you have to give up things to be included when you disabled. And honestly, this happens more often than you might think. But sometimes like tonight, it’s worth it.
What would you do if you won the lottery?
I think it’s something that everyone talks about from time to time. Even when you know it’s never going to happen, it’s good to dream.
But I don’t even play the lottery, I don’t really have the money to waste, so I’m never going to win am I.
But let’s still give the question a go.
I used to say that I would by an accessible camper van. So I could live somewhere that was completely accessible to me, travel where I wanted, and see family. So that I could stay somewhere else without having to be uncomfortable. I even used to say that I would pay for carers to be on call 24/7 and follow me around in there own camper van.
And while this idea is nice, and maybe something I would do if I won a lot of money, I don’t think it’s where I would start if I won the lottery any more.
I would start with doing up the flat I live in now. Making it look nice and a little more lived in than it is.
I would then buy some more up to date tech. A good computer, a good phone things like that.
I would then stock up the house, get some better appliances than I currently have. I would make sure rent and bills are paid well in advance if possible so I wouldn’t need to worry about them.
Then a holiday, abroad. Somewhere hot maybe, or somewhere I’ve always wanted to go, Las Vagas, maybe. Or I’ve always wanted to go on a cruise, that would be fun. Or even just to say somewhere in a posh hotel.
I would also love to try a spa, get a new tattoo, get my hair done professionally. Those types of things. Maybe I could even get a jacuzzi in the garden with a hoist so I could use it.
Maybe then a car, and learn to drive.
What I find interesting about what I would do if I won the lottery, is I would just live a more accessible life. I would just like to explore the world a bit L, and live in little more comfort.
I don’t think that makes me different from many people. It’s just the money might be spent a little differently in order to active it.
It is likely to cost me a lot more to live a comfortably life, because of my disability. Life is more expensive when you’re disabled. Added to this is it is harder to earn money, and when it’s harder to earn money, you have less of it, which makes things altogether more expensive. And the inaccessibility of the world costs money to solve.
Life is just altogether more expensive when you’re disabled. People including the government somewhat recognise this, but no one who doesn’t live this life, truly understands the cost of disability.
My fur babies are the greatest thing in my life. A lot of the time they feel like the only thing that gives my life meaning. That doesn’t mean I’m perfect in the way I care for them, but I always do my best.
I have to have carers, I hate having carers, I am never going to want to have carers. They feel like the bane of my life a lot of the time. They are so necessary for my existence, yet they make me feel incredibly disabled a lot of the time.
I’m going to admit that my babies aren’t the most well trained, particularly with oldest girl, she has a lot of accidents. I can’t and don’t criticise her for it because it isn’t her fault. But I’ve had carers in the past do that.
My house is clean, but sometimes things are missed for a little bit that’s the way it is. But my carers have complained before about this, and gotten me in some trouble with social services. Lets just say that recent events have made me concerned that they might end up doing the same again.
When you have to have strangers in your house, it can feel like the state of your house is judged a lot. My house is also there work place, particularly my bedroom. I literally have no space in the world that is just mine, and I hate that.
I can’t live in a house that’s a mess, without someone complaining, and I can’t do anything about the mess,. Additionally, what some would see as a major source of that mess, are the only part of my life that I would enjoy.
If I had to choose between my babies and the carers I would choose my babies, but making this kind of choice is something I know that I would suffer physically for.
The truth of the matter is I don’t want carers, I don’t want to have to live with anyone. I want to live on my own in the middle of nowhere, in a campervan, with my babies. But that is never going to happen. I’m never going to be able to be on my own. And I hate that.
So because I have to, I accept that I need carers. And if you don’t really know me that well, you may think that I’m perfectly okay with that. I always try not to cause more problems in life, and that includes complaining about a situation like having carers, to the carers. Honestly the carers I have could show me the same curtiousy, they spend a lot of time complaining about there job in front of me, but that’s beside the point. This politeness has been ingrained in me, and that’s another story, but it doesn’t mean that I’m okay with the situation. And i think I deserve to have somewhere where I vent the true feelings of this situation.
This blog, and my Tiktoks are places that I’ve found that have given me the space to be able to do that. That have given me the space to be able to be more open and honest with my emotions. And I feel like my carers recent intentional vialation and judgement of my me throug my Tiktoks have taken that from me. I checked by the way, she went back months to find dthe tiktoks she had issue with. For the record if it wasn’t obvious, I never include names of carers or companies in anything I record, write or say publicly, but you wouldn’t know that from the reaction I’ve had recently.
Now I feel scared to be open about my feelings publicly and to people that don’t know me. I feel like I’m back to pretending I’m happy with things I’m not happy with, just to make sure other people are not upset. I’m also worried that the carers can use the current situation to spite me and cause some real problems in my life.
For the timebeing I have privated my Tiktok account, and have made steps to block all carerers that attempt to follow me. One of them actually did add me, which I’m pretty sure is not proffessional. This is part of why I’m writing this entry. To keep opening up, and not letting people win, just because they have feelings about how I feel.
So I guess I just want to say, that just because things seem easy, because people have to do things, because they look like they’ve accepted things. Doesn’t mean any of that is true. Life is hard. Having no control is hard. Being judged is hard. These things, at least in my experience don’t get any easier.
I’m always to need them. Logically, I know that. But some days it’s really hard.
I’ve posted about my difficulties with carers, and this morning, I had carers complain to me about posting.
I was finally getting the confidence to be honest about my emotions and now I feel like I’m never allowed to do that again.
Sure, social media isn’t the best place to do that. But it’s easier to talk to no one, to be honest when no one is there, but at the same time I want to tell people.
Having carers is hard. Living by other people’s rules is hard. I’d give anything to not need them, to not be disabled, right now.
I’m tired of this.
And despite all of this, they’re going to come to night and touch me because I need them to. I just want to be on my own.
Just because you need something doesn’t mean you like it.
Given how much help I need on a day to day basis, you would think I’d be okay with asking for help. But in all honesty, I still struggle, even when I pay for it.
I have a cleaner come semi regularly, which I pay for. And I still don’t like needing their help, even though they agreed to it, and I pay them.
The only help I get that I’ve become somewhat comfortable with is that from my family or carers. And I think the only reason I’ve become okay with it is because I don’t have any other choice. That said there has been times I’ve injured and burnt myself, rather than ask my help
So this is your reminder that even even people have a lot of help, they may not be comfortable needing it. Regardless of how much help someone has or how long they’ve had it for. Asking for help can be big step for others.
So this morning my clothes had a hole in them, and I didn’t realise until after I had them on. Now I couldn’t ask the carers to change my parents, they would have said no anyway for time related reasons. And I know this so I didn’t ask them.
You don’t get to change your clothes if your me, you don’t get to put new pants on, or a different outfit if there’s something wrong with it. There isn’t time when you need help, for choice, for experimenting with outfits. At least not with the care package that I have.
Maybe this is why I mad myself a uniform. To avoid being stuck in clothes that I don’t like wearing. But today that uniform failed, and I just had to put up with it.
This is why tomorrow I am waiting till after my carers to go to the family party, as it’s my only opportunity to be redressed and somewhat presentable for the situation.
But however they dress me, even if it’s wrong or uncomfortable, I am stuck with it. So wish me luck that I’m dressed as comfortably as I can be tomorrow. It’s already awkward for me to be at family events at inaccessible venues, without being dressed uncomfortable.
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.
Tonight was one of my designated shower nights. This means that the time that my carers are here is extended so that I can have a shower. Tonight I chose not to have a shower.
This is, of course something I’m allowed to do. I’m an adult, therefore allowed certain choices over my own care, within the restraints of the current care system, where I am. Yes, that last sentence was more of a Reminder for me than it was providing information for you.
But anyway, the point is I chose not to have a shower tonight. This means that I lose out on one of my appointed showers for the week. I cannot just have an extra one on a different day because I decided not to have one tonight. And I know this, I don’t like it, but I know it’s my reality.
So before I decided whether to cancel a shower, I look at what I’m doing between now and my next shower. I do this to try and determine how important it is that I have a shower. As I think you can tell, I decided that it wasn’t that important tonight.
Now, I know I’ve said this before, probably more than once. But when you need Carers, when you need other people to help you, the choices you get are limited.
The freedom to do what I want exactly when I want to do it, is again inaccessible to me.
This is one of the forms of an inaccessibility that I understand in the world. I don’t like it I don’t think it should be that way, but I do understand why it is. When care needs to be provided to a great number of people as part of a service, exactly when that Care is provided and how long it takes, and how many people are needed to do it, has to be decided on in advance. To make sure that everyone receives the care that they need. Like with any job, deadlines need to be met.
I hope I’ve said enough on this for that to make sense. I don’t really want anymore, the specifics of Care as a job at the moment, as I’m struggling emotionally, a little bit with this right.
Overall, I have mixed feelings when thinking of myself as a job for the people. Sometimes the formality helps, I feel like of a burden, when I know someone is getting paid to help me. But sometimes I feel like it reduces my life to someone else’s job. Like I don’t matter outside of that role. Like my needs and not important except to provide a paycheck to others.
But as I’ve said while I don’t like it, I understand why the system exists the way that it does. But that does make free choice of in this example, when I shower, inaccessible to me. I’m never going to be able to have a random shower at 4 am just because I fancied it. Or have an hour long shower where I just sit under the spray and feel the water.
And I know not having these decisions seems like a minor problem. Why would I want to do these things anyway? Honestly, I probably never would. But the difficult part is that the choice isn’t mine.
The choice is never going to be mine, not completely. All these little random things that you might choose to on a whim.
Making food in the middle of the night.
The random urge to clean, which frustratingly do you get, but I cannot act on.
Not being able to sleep in the middle of the night, so wanting to go for a walk, again, I get the urge to do this, but can act on it.
These little acts of freedom. The last minute experiences. I’m never going to get.
And in reality, the individual choices don’t mean a lot. But the lack of choice can be very emotionally draining.
I apologise if this post assumed a little little bit repetitive. I got caught in the emotion of its all and lost my way a little.
Additional disclaimer. The majority of this post is written using speech to text. Let me know if there’s any massive errors which have resulted in you not being able to understand any part of this and I will fix them as soon as possible. As I’ve said before please only point out mistakes, that effect understanding
Are you more of a night or morning person?
After a fun, busy, but very cold day, I got home and took a nap. At the time of writing this, I’ve not been awake long. I was awake briefly for my care call, but I went almost straight back to sleep, so I don’t tend to count that.
I will probably be awake for several hours, which will annoying leave me feeling tired tomorrow, despite having slept fairly well.
Now last night I last quite well, so despite going out for a few hours, shouldn’t have been as tired as I was. But that’s fatigue for you. You don’t get to choose when you’re tired, it has almost no relation to whether you have slept or not.
It might be worth remembering that I’m always a little tired, I often say to people I was born tired. Occasionally I am so tired that I’m not able to function without a nap which usually lasts a few hours first. That was the position I found myself in tonight.
This is my best guess at what fatigue is for me, I refer to this as CP Tired, as I know this is tiredness that for me comes from my Cerebral Pasly. But as I’ve suffered from both Cerebral Pasly and this tiredness my whole life, there’s nothing I can pinpoint as a change and a distinctive development of fatigue. It’s just the way my life has always been, and will always be.
So I find this question hard to answer, given the fact I’m always tired in some way. I do have an early care call in the morning, but that is so I can be up and have the most choice and control over what I do with my day. It’s not actually because I like to be up early in the morning. I often end up going back to sleep for a few hours in my chair, depending on my plans for the day.
Based on what I’ve told you, I think I’m going to leave you to determine the answer to this one for me.
Do you think I’m more of a morning or a nice person?
The truth is I honestly don’t know.
My Inaccessible Life 