Carers

What are your morning rituals? What does the first hour of your day look like?

The carers get me changed and dressed and then I tend to go back to sleep in my wheelchair. 

This depends on whether I have to do things in the day, mind you. If I have to do things that involve going out, and have a say in when they get done, I try to get them done as early in the day as possible. In this case I wouldn’t go straight back to sleep. I would wait until I’ve done what I needed to do.

If I don’t have a say in the times things need to be done, I would probably sleep until the time that I need to do whatever it was.

If I get a say in it, which because I need help to do if, I don’t always. I like to get the dogs walked as early as possible. In all honesty this is just to get it over and done with so that I can go back to sleep.

Fatigue sucks let me put it that way.

This is a hard question, then it might seem, at least for me.

Which animal would you compare yourself to and why?

As you may have notice with these writing prompts, I might not always answer them the way they’re intended to be answered. But maybe that’s the point of the prompts.

So in order to answer this question, how I want to, I have to answer it to different ways. Reflecting my life, I suppose. The way I would answer it on instinct. And the way, I answer it as a disabled person. This might seem odd given the type of question being asked, but I think it’s just hardwired into my understanding of the world. And given the fact I’m disabled I think that’s fair.

My instinct is to go with an elephant. They’re clever like to watch the world go by. They seem to revel in the joys of an easy life, and sometimes that’s all I want.

Taking my disability into consideration I think I would be a good dog. Dogs are calm and loyal and they understand the needs of the people around them, believe me a say this from experience of my own doggies. I think these are qualities that my disability has taught me.

I would like to be a dog most of all I think. The calm relaxed lifestyle, the love, to never get bored of your food. All of it just seems better than being a human.

5 things

List five things you do for fun.

  • Sleep
  • Play with the dogs
  • Write
  • Watch TV
  • Listen to music

I hope you’re able to write this list.

Remember it doesn’t matter what you for fun, just that you have something that you do for fun. Whatever that is, I’ve hope you managed to do that today.

What matters to me makes my life complicated, what I don’t want, I need.

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.

My babies.

Can you share a positive example of where you’ve felt loved?

Animals give a love like no other. One we don’t deserve.

They see me in a way no one else sees me.

We truly don’t deserve animals.

Image Description: Myself lay in bed smiling at my grey cat who is on my knee behind them is Imogen Labrador and next to my head is Bella my caviler King Charles

Snow Day

I’m someone that likes to spend a lot of time in my house, but it’s different when you don’t have a choice in that.

If you ever look at that too closely at my situation, you might come to the conclusion that that is because the world outside is difficult for me. There is a lot of inaccessibility that I face on a daily basis. Far more than I will ever have the time or energy to process let alone write about.

There is just some stuff you just have to ignore to get on with your life. But it’s impossible to ignore everything, and I don’t think I should have to just make everybody else feel better. This is why I started to write about and share my experiences.

Today is one of those days, where I can’t ignore my experiences of inaccessibility. The inaccessibility I’m facing today, and my lack of choice in this, is obvious today. As the picture below shows, today is a snow day.

Image Caption: The ramp outside my home covered in a thin layer of snow.

While I have cropped this photo to protect my safety and not give too much away about where I live. The original photo also showed how my garden and the pavement and road outside my home were also covered in this amount of snow.

This may not seem like a lot of snow, and I completely understand that depending on where you are in the world it actually isn’t. But when you use a wheelchair it doesn’t take a lot of snow to make going outside incredibly dangerous. So I’m going to be stuck in the house.

Now I had no plans to go outside today, I’m actually waiting for something to be delivered. The only thing I really had to do was walk the dogs, but they’ll be fine for one day.

But now I can’t leave the house, and this isn’t just a choice, things feel a lot different.

Choice matters. And just because someone is doing something that you wish you could do, like staying at home, doesn’t mean they’re doing it by choice.

Today the world is inaccessible to me because of the weather. And that means there’s nothing I can do about it, but wait for it to pass. Maybe tomorrow will be different, but we’ll just have to see.

I hope you get to enjoy the weather wherever you are, and have the best day you can, whatever that looks like for you.

Dogs.

What is your favorite animal?

Both of my girls, make this an easy question. But then again, I also have a cat. You’ll find us all pictured below.

Image Description: Myself lay on my bed with my yellow labrador and grey cat lay on me, and my brown caviler king charles behind my head.

Either way they’re all my babies.

I haven’t been sleeping.

That’s not strictly true, I have been sleeping, just not at what you might consider an appropriate time.

I’ve been sleeping a lot in the day and up most of the night. It’s what happens sometimes, my sleep pattern falls apart.

I find it really hard to leave the house, to get the desire to leave the house. I do go out to walk the dogs, it wouldn’t be fair to put this emotional state on my dogs, but that’s about it.

I come home from walking them, I watch TV and sleep a lot, on and off in the afternoon and evening. Then I’m up all night, sleep in the early morning. Till I get up to walk the dogs. And the pattern continues.

Part of me hopes this ends soon, that I can get back to normal. Part of me hopes I never will.

We’ll see what happens I guess.

Sometimes I need a day off.

So I don’t think I realise that I’m overwhelmed until I get overwhelmed if that makes sense.

Today I was supposed to go to a family lunch time thing that we do every week. But because other members of my family were there, my dad wouldn’t let me bring my dogs, which he is usually okay with. So I decided not to go and see everyone, I stayed home with my dogs instead.

I spent the day, with the dogs, sleeping. And it’s only when I slept most of the day, more than I thought I would. I realised how much I needed to sleep, how much I needed a few hours away from people. And it was lovely.

Take the day if you can and if you need it, to do what makes happy. Even if that’s just going for a nap with your dogs.