We all have to make sacrifices

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.

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

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.

Christmas evening

I want to say that I spent it alone, but that’s not true because I spent it with my girls, enjoying a curry.

And while this was my choice it doesn’t always feel like it was my choice to make, more like a choice that happened to me. Not that that makes sense from the outside.

In order for me to stay with my family I would have had to sleep in my wheelchair, and that is just something I did not want to do.

So you could say I chose not to spend the night with my family, or you could say I chose to be comfortable. It just frustrates me that I had to choose one over the other.

It seems my choice will always be my own comfort or the comfort of those around me. It feels like I will never be in a situation where it will be possible for all of us to be comfortable. And I’m always the one expected to make the sacrifice. I chose not to make that sacrifice tonight and my reward for holding to my word is being away from my family.

It’s not that I blame my family for this just that I wish the world was more accessible to me so that these choices didn’t have to be made. Or maybe it is that I blame my family and I just don’t want to recognize it. I honestly don’t know.

I got stuck today.

When I was out walking the dogs today, I got stuck in what I later learned was a hole used for trees in a pavement.

While I was with my sister she was unable to help me alone and we had my brother. While waiting for help my sister took the dogs home so they were safe and to be frank out of the way.

For a while, we thought my wheelchair might be broken, but thankfully this was not the case.

The hole that I fell into was covered with leaves and therefore was not clear. And unfortunately, the person who worked in the place this was outside of, didn’t seem likely to want to ensure that no one fell in the hole again. All they would have had to do is put a cover on the hole, or a sign to warn people about it. They don’t seem to care that there lack of care makes part of the world that they are responsible for dangerous and inaccessible to some.

Please if you can do what you can to keep the world as accessible to as many people as possible. We all deserve to be able to move around the world safely.

I do feel guilty that my brother had to come and help me today but I’m very glad he did. It can be emotionally difficult when you’re an adult, to randomly need quite a lot of help from people but I’m glad that I’ve people to help me. Sometimes we all need help.

Never.

How often do you walk or run?

Sometimes questions are phrased poorly when you’re disabled. I am a full time wheelchair user, I have never walked and will never walk a day in my life.

Therefore the only way I can answer this question is to look at it from different points of view and that changes the answer I will give.

If you’re asking how often I exercise, which could be what this question means. Then many of the tasks that I have to do on a daily basis, rolling, lifting my bag etc. can be considered exercise. Intentionally exercise I do rarely and if ever, I get tired enough just living.

Another way you could answer this question is by looking at how often I get out of house. And honestly my girls are a massive motivator for that. They are walked daily when the weather permits. When they are not with me, I don’t usually like to go out without having somewhere to go, but I might take a longer journey home if the weather is nice.

I hope this answers the question, but I guess that’s up to whoever is redding this to decide. 2