Hard work can be complicated

In what ways does hard work make you feel fulfilled?

But working hard at something to me means I do something that matters to me. Something that was difficult for me to do that I pushed through in order to finish it. It doesn’t matter to me what I had to push through of what I was trying to complete. Whether that was writing a really hard essay, or making a coffee. If I had to push myself through it, then it was hardwork and if I complete it I feel fulfilled.

Now this is complicated because its a fine line between pushing through hard times, and as a disabled person trying to overcome my disability.

Overcoming my disability isn’t something that I try to do, or anyone should aspire to do. My disability is part of who I am and I deserve recognition as in individual without overcoming who I am. Yet I take pride in working through a difficult task. And I don’t always get the balance between the two right. Between working hard and trying to overcome who I am.

Out past curfew.

Now don’t get me wrong I don’t technically have a curfew however the care that I need usually means I have to be home for a certain time. At least as I begin writing this I am sat on the bus, several hours after this time. Though by the time I finish this post I will likely be home. As my journey on the bus is short so I don’t think I will have the time to finish the post before I get off.

I do apologise as I finish writing this it is in fact the next day. That is the cost of staying up late. I slept 11hours and woke up tired. Not forgetting that ih the middle of this I had my care.

It’s odd getting to be our when you want to be, especially when your body isn’t used to being out. Your brain is like woo, we’re out being an adult, this is awesome. Your body I’d like when do we get to go to bed?

My body is used to the curfew pushed on to me. This makes it hard fo brake even when I want to, despite never wanting it in the first place. This makes it seem like I choose the curfew even though I didn’t. Then it can be even harder to argue not needing it. Though in all honesty while I don’t need or want the curfew because I have carers I will always have it.

Sometimes the internalised ablesim hits later

So you may recall my post from late last week exploring (all be it briefly) a night out with my family. At the end of the night, one of the people outside of my immediate family that was present helped to get me into bed.

While they were helping me, it did not bother me as I knew that I needed their help at the time. I even let them have a go in my wheelchair and hoist. Any OTs that stumble across my blog, you did not read that last sentence.

In the days which followed, I began to feel guilty about the way they had to help me, even though they were the one to offer to help me.

Sometimes I wonder if the guilt of needing help will ever leave me alone you know. I don’t think needing help is bad of course, but sometimes the reality of just what I need help with is hard.

However I will still take the help which is an improvement from the complete avoidance, which is where I used to be at with needing help from outside my immediate family. In other words, I would just insist that I didn’t need the help, because of who it was coming from. At least now the guilt comes later, and it doesn’t prevent me from getting the help I need.

Remember you deserve the help you need, no matter how you feel about it. Your feelings can lie to you.

It’s okay not to be okay.

Share a lesson you wish you had learned earlier in life.

Image Description: Black text on a blue background in block capital font. The text reads “It’s okay not to be okay #THESADCOLLECTIVE

I know this is something that people say a lot, and while it is definitely true for everyone, I think it hits a little differently when you’re born with a condition or disability.

What I mean by this is that a lot of the time those of us with lifelong conditions, where not being okay is our normal, often forget that its okay to not be okay. This is because this means not be okay with our normal, which is not a way you would be able to live your life daily. But our normal is not normal, and it’d okay to let that get to you sometimes.

At least in my experience, it will eventually get to you anyway. And by ignoring it and not letting it out when you need to, when it hurts it hurts more.

You haven’t got to earn the right not to be okay, I promise you.

Sorry.

If you had to give up one word that you use regularly, what would it be?

I spend a lot of my life apologies for things that someone doesn’t need to apologise for. Sometimes it’s just for existing as me.

It’s definitely some form of internalised ableism that I haven’t managed to let go of just yet. At this point in my life I’m not sure if I ever will.

But I know that I should. Logically I know I need to stop apologising for just being. But knowing something and doing something can be two different things.

So not being able to say it would probably help me in the long run.

Not strictly answering the question.

What was the last thing you searched for online? Why were you looking for it?

This isn’t exactly the last thing I was searching for online but it is the most interesting. Technically speaking the last thing I googled online was a British pound to US dollar conversion tool.

After seeing on a tiktok how much disabled Americans who are on benefits, have to live on I wanted to compare this to disabled people in the UK. I’m not going to answer who is better off, if you want the answer I suggest Google yourself.

But I recently had to Google for a train journey I’ll be taking next week. Its been a while since I’ve been on a train. The last time was soon before I lost my mum. Truth be told I’m kind of nervous.

Thankfully from an accessibility point of view, I have been able to book wheelchair assistance using an app, which I really appreciate on a personal level as it avoids me having to make any kind of phone call. I hate phone calls.

But anyway, I’ll let you know how it goes.

I watched a lot of TV

What TV shows did you watch as a kid?

I was the kind of child that grew up watching TV.

I was the first one of my siblings to get a TV as my parents understood that once I was in bed I was stuck.

TV gives me freedom, representation, entertainment, I’m sure the list goes on.

One of my favourite TV shows as a child was Glee. Particularly because of Artie the character in a wheelchair.

So make no mistake I was devastated to learn that the actor was not in a wheelchair. That he was acting. Learning this, took away the representation I thought I had.

I still love Glee. I have recently watched it. But this was a moment I will not forget.

Procrastination and little things

What may or may not be clear from my posts is that I don’t normally consider the title for them, but in this case I did. Writing this post is definitely me procrastinating writing the things I should be writing. But maybe just maybe writing this post will aid me in the writing I should be doing, but I guess we will find out once this post is finished and I get back to it. It’s funny how when you can’t write about one thing you are able to write about others, but this I suppose isn’t really relevant right now and may just all be part of my procrastination.

So, we had a moment this evening with what we think was a moth in a room and I told my sister to open my windows to see if it would leave, and I’m telling myself that it did. But anyway, as my sister was opening my bedroom windows that barely get opened, mostly because I’m afraid that we will forget we’ve opened them and leave the house unsecure, but anyway the point being one of them stuck. So, I thought my sister should try the rest of the windows in the house to make sure they also still opened, and one of them didn’t. It’s obviously not that important, as we don’t open the windows, but it is frustrating.

It is one of those frustrating things that I will probably get over at some point in the future, as I often have to do with the things that frustrate me, but it will just take some time.

What frustrates me more than the fact that there’s a problem with something in my house, is that there is a problem with something in my house that I am unable to fix myself. So really more than the frustration at the problem, the issue is the frustration at my own uselessness with the problem.

I feel this very often upset at the things I can’t do. Most people would probably assume that I have gotten used to things I can’t do in life, given the fact that I have not been able to do them since birth, that I have never been able to do them. That idea that you can’t miss what you never had. From my experience this is not true, not true at all. It simply something people tell other people who are struggling with these feelings, a platitude to make the ‘friend’ in the situation feel like they have had some input, like they have solved the problem somehow.

I definitely miss many things I have never had.

Even though I know that there is no point in me feeling this way, I simply do. Knowing that feeling the way you do is only hurting you, is not enough to help you stop feeling that way.

Of all the things I am unable to do, it is not being able to do the little things in life, to solve the minor problems, that cause me the most emotional stress.

I see people online who feel sorry for disabled people not being able to do what they seem to consider the most important things in life, like walking or having sex. Though the sex one I may not get because I’m Asexual rather than disabled, but still people have felt sorry for me as a disabled person presuming, I believe myself unable to have sex, rather than someone who does not want to. I could honestly write a whole post on Asexuality and Disability, or at least my experiences of it, but we’ll leave it there for now.  

The point I am trying to make is: It does not bother me that I cannot walk, it does bother me that I can’t open a stuck window.

Not being able to do the little things in life is a real emotional struggle for me, and probably will be for the rest of my life. I guess it’s just something that I will have to try to deal with, or at least cope with.

Anyway, for now I’m going to try to get back to the writing I should be doing. Wish me luck with it, I think I need it.

Nighttime.

What’s your favorite time of day?

I prefer the nighttime because either I get to work or sleep. Yes, right now I am technically doing either because I’m procrastinating both. But it’s the only time of day when I’m completely on my own, left to my own devices, and freedom.

I feel so much less disabled on my own sometimes, but usually at night. No one expects anything of me and I am free just to be me. That said the trade-off is being stuck in bed, but I accept that you can’t win them all.

I can tell a story here but its not particularly happy.

What’s your favorite recipe?

A story of inaccessiblity and hunger and making do.

Before I begin this story I just want to say that I did have access to help, it was my own anxiety and shame that prevented me from getting it.

But many times at home as a teen I was left alone for several hours. I would get hungry and be unable to teach any of the food that we did have in the house. As such I would eat condiments as these were within my reach.

So while I can’t say it’s my favourite recipe. I do enjoy some extra seasoning once in a while after I have finished a meal.