I suppose to answer his question it depends on what you mean by camping.
If we’re talking in a tent, I have vague memories of possibly doing so as a child. Definitely in my garden and definitely on the trampoline. But there is also a possibility that we went to a campsite to do it.
If we’re talking in a caravan we definitely did this growing up, I can vividly remember it. We also had an awning that the children would sleep in as we didn’t have the room in the caravan.
So yes. I did go camping as a child. It’s not something I do now as it’s not the most accessible activity when you’re a full time electric wheelchair user.
This time I definitely am. But telling the truth about this just seems selfish so I won’t.
It hurts honestly, when those close to me do things without considering me, even when I say it’s okay. I feel like I’m being left out, and sometimes that just really gets to me.
I know that living my life as a disabled person there is always going to be things I can’t do, there is always going to be things that aren’t accessible to me. If there wasn’t I wouldn’t be disabled. And part of me really wants to tell people that if I can’t do something they shouldn’t be doing it. But I understand how completely selfish that is so of course I wouldn’t do it. Of course I wouldn’t say I don’t want you to do that because I can’t. Why would I do that? But the truth is I really don’t want you to do some things because I can’t do it.
It makes me angry and upset, and quiet. I’m not really sure what more to say about this situation. I’m sorry that I’ve not said more. But I think I’m still angry, whether at myself or them I’m honestly not sure. I want to say I’ll write more later, but if you’ve read this blog for a while you know I would probably forget.
I’m also not having a shower tonight, and if I’m honest the definite reason behind that is because I do not want to get more in there way. I do not want to take time away from them having fun by showing, because that honestly just doesn’t seem fair to me.
That’s because purple is my favourite colour. But there are some other emojis that I really love.
There’s this one: 🩶 the grey heart.
There are two reasons I love the grey heart. The first is because my cat Ellis is grey, so I often use this emoji when posting about them. The second is because it means I can post all the colours of the Asexual Flag in emoji heart form: 💜🤍🩶🖤. That’s the purple heart, followed by the white heart, followed by the grey heart, followed by the black heart.
I feel like here I need to take a second to inform you that for my dogs Bella and Immy I also use coloured hearts. For Bella I use the brown heart: 🤎, and for Immy I use the yellow heart: 💛. And now just because I have an excuse to, I’m going to include a picture of all three of my furbabies below.
Image Description: From left to right lay on my bed is Bella, my brown with white markings caviler king charles, Ellis my grey cat with white markings, and Imogen my yellow labrador.
So back to emojis. Obviously as an aminal lover I love the dog and cat emojis: 🐕 🐶🐈🐈⬛️😺. I particularly the black cat emoji and the panting dog emoji: 🐈⬛️🐶, as I think they are similar to Ellis and Bella. Then we can’t forget the paw print emoji: 🐾, which is just so cute.
Then I’ve got to say that I love the wheelchair emojis:👩🦼👩🦽🦼🦽👨🦽👨🦼. I love that there are different types of wheelchairs included in these emojis, and this one: 👩🦼, is similar to my wheelchair, which makes me even happier.
I also have a family member who cannot read or write, but who uses the colour of emojis as one of there ways to communicate. Which is really nice.
I think emojis are both a great tool for accessibility as well as just being a bit of fun. It’s nice they can tick both boxes.
When I need help to do something that I don’t have any control with when and sometimes how it will be done.
I like to walk the dogs first thing in the morning, simply to get it done. But if the person I live with disagrees, like they did this morning, I have to wait for them to want to do it.
I loose the argument of when things get done when I need to help to do them. And today is just one example of many.
Sometimes it really gets to me, the simple fact that often I can’t just do what I want when I want. The fundamental lack of control is something I don’t think you can really understand the impact of unless you experience it.
Last night I slept for 12 hours so I feel ready for the concert I’ve got this evening. But knowing my luck I’ll be tired by the time actually comes around. Sometimes my own body doesn’t want to make fun accessible to me.
Though my body is not my biggest concern on a concert day. I feel better once I’m in the building and I know no one is going to try to make me leave. It’ll be worth it I know it will be, but there’s a lot of anxiety involved in going to a concert for me.
I really want to see that it baffles me that society hasn’t thought of the need to make concerts accessible to disabled people. But in order to say that I would have to be naive and forget that he just doesn’t care about disabled people. We’re not allowed to have fun.
I really just wish having fun was more accessible, it’s always so complicated, and has so many moving parts. So many that I find myself unable to deal with them and leave sorting the accessible to the person that goes with me. I just got too angry to see it with a clear head. I can’t get past the fact that it shouldn’t be this complicated to go to concerts if you are in a wheelchair. That when the venue itself is accessible, there’s no need to make it as hard as many venues do.
That said, I hope this will be a fun experience. And I actually get to meet the artist (hopefully), which makes it even better. When I say hopefully I do have a ticket to meet the artist, but whether they will actually let me do that is another question. I’ve never done this before so I’m slightly nervous that my disability might make this complicated as well. Or I should say that the venue will use my disability to make this more complicated. But I hope it will go well.
The reality is I don’t know how this will go until I am there. So I will just have to wait and see. And try to focus on the best part of all of this, the music.
I love music. It is a tool that makes me feel part of society, mostly. I feel the same as the others who listen to it. It’s only when I go to concerts that things can get complicated. But music itself is the least complicated way for me to be part of society.
I’m that person that has my electric blanket on every day of the year. i’m not kidding on average I have to buy a new blanket twice a year and they eventually break on me, no doubt because of how much I use them.
I once gave myself the temperature because I have my electric blanket on during the hottest day of the year.
I will put my fan on with my electric blanket on before I will turn the blanket off. Heat is my best friend. And with chronic pain you have to do what works.
So when I come home from a busy day, or sometimes just relax from a busy day at home. The first thing I usually do is get under my electric blanket.
I’ve even been looking  for usb powered electric blankets, so that I would be able to use them out of the house. Though I haven’t been able to find them that works properly yet, despite trying a few different opinions. If anyone has any ideas can they let me know please.
The problem with relying on people and technology is things can simple go wrong and there’s nothing you can do about it.
Yesterday my wheelchair died when I was miles away from home. It died because it hadn’t been plugged in the night before. Even though I am not the person that plugs it in at night, this is of course my fault because I should have checked they had done it. It’s just one of those things that usually gets done correctly and so I forget that I should check on it. To be fair they had plugged it in just not switched it on at the wall.
Either way it didn’t charge and I was stuck. Which I am actually somewhat relieved about because yesterday I wasn’t sure if my chair was broken and that’s why I was stuck. It having no battery is an easy problem to deal with.
The only way for me to get home then was paying £145 in a taxi. As when my chair has no power everything that was previously accessible to me, like trains, my planned way to get home, becomes inaccessible. And because I can’t just get into any vehicle, no one could come and pick me up, so a taxi was the only option.
Now taxis have to be up there with the least accessible mode of transport for me, alongside other cars. While it is possible to find accessible taxis, like I did yesterday. This can be very difficult to do.
Many taxis say they’re wheelchair accessible but will only take people who can get out of there wheelchair and fold it into the boot. I cannot do this. So for me this is not a wheelchair accessible taxis. I have even had taxis come and then refuse me, despite specifying before hand that I wouldn’t be able to do this. But you know how people love to blame you when they don’t listen.
Accessibly means different things to different people and companies.
Emergencies happen, things go wrong and get forgotten. But when they go wrong with my chair it’s honestly terrifying.
You know all those little things that pop into your head to check when you’re trying to sleep in the middle of the night?
Well I can’t check them.
I can’t check where that charger I don’t really need is, or if the front door is locked. Or if one of the babies are doing something they shouldn’t be in the night.
But despite not being able to act on them, I definitely still get the thoughts. I still want to check the heating is turned off or if the front door is locked.
And again, I can’t check them.
When it’s at it’s worse every thought feels like nothing more than a reminder of the things I cannot do.
I just wished the thoughts matched my body. That my brain and the rest of me were on the same page, just once. It would really do me a favour if I no longer had the things that my brain stated to me at the moment which I’m not able to do them.
Fatigue is a big problem for me at the minute. And I did the thing you shouldn’t do and googled, it’s going to get worse.
It’s really hard to get the motivation to do thins when I just think hey I’d rather be asleep than do that. And if I do massage to catch it where my brain is on board, it always seems like my body is on a different page.
There are many reasons why it can seem that is my body that makes the world inaccessible to me, and this is just one of them. I have to push myself against my own body.
I’ve tried to regulate my sleeping pattern and even if I can do so for a while, it never seems to stick. Something always happens, I sleep to much or not enough for one day and it completely throws me off.
I’m going to really struggle this week. I have a big day this week where I’ll be travelling all day, and I can already tell I’m going to be exhausted for it. Afterwards though it should help my brain and my body to reset.
So I guess this one’s just to say bare with those of us who seem like we never sleep or sleep to much. We’re trying. It annoys me to.
My Inaccessible Life 