I wouldn’t say I wish chronic illness or disability on anyone, but as I age and everyone I know slowly joins the disability club, it’s an interesting experience.
Watching their entire life change as they learn to cope with things I’ve been coping with my whole life. Watching others care because it’s new to them, and knowing it won’t last when they loose interest.
I don’t mean to judge anyone with this post, it’s just what I’m observing. It’s like everyone around me is starting to join the club, just like I told them they would. And sometimes I just want to go “ha I told you so”.
If you’re reading this and you’re not disabled just reminder that Disability is a matter of when not if, one day it will be you.
So I’ve been trying to get on to a transport service in my local area, specifically aimed at those who would struggle to use public transport or drive for whatever reason. While they are technically accessible if you use a wheelchair, like most of the things in society, they are still extra complicated for wheelchair users.
I expect things to be more complicated when I try to access them as a wheelchair user, but there’s something that little bit more annoying when trying to access a service specifically aimed at people like me. You would just think they’d be more prepared, that they would know what they were doing. That there would be less steps, if anything,,but definitely not me.
I know I’ll get through all the extra nonsense yet again and be able to use the service. But there’s just so much of it, and it keeps happening. It really feels like society is punishing me sometimes for being disabled.
For reasons that I hope are clear if you’ve been following me for a while now, I’m a member of many different disability and chronic illnesses groups on social media. A common topic in both is chronic pain, but something I don’t see discussed is chronic discomfort.
In my experience this goes alongside chronic pain but is something that is distinctly different at least in my experience. But no one seems to talk about the difference, so it has me wondering if I’m making it up or just not phrasing it right?
It’s like sitting in my body doesn’t quite feel right. Like I always need to be moved a little bit, and I can never find that one spot I’m looking for. In itself that’s doesn’t hurt, I mean it does hurt, I do hurt but that feeling is different to me.
I don’t know maybe I’m talking rubbish. Maybe it’s the same thing. Maybe it’s because I’ve spent so much time in my chair recently. Who knows? Not me.
I’ve been peeing on myself my whole life. Sometimes it doesn’t bother me, sometimes it’s the most annoying part of my disability, and I can’t tell which it’s going to be until it happens.
It’s hard to have a problem that society only views one way. To know that because of things I can’t control there’s always going to be some people that don’t see me as an adult, and I can’t change that.
I’ve been asked periodically about whether I would still be disabled, if I had any choice in it. And the truth is, I don’t know. My disability is a massive part of my existence and I don’t know who I would be without it. But one thing I know for sure is that I wouldn’t be incontinent if I had a say it in.
It’s not even the physical aspects that put me off here, though they’re not great. It’s the emotional and social aspects of incomtinence that are the hardest.
If you’re wondering what prompted this post, I’ve peed on myself today. I’m saying it on here, not only to make myself feel better, but also as a reminder that it happens and it’s okay.
There’s lots of different types of grief, and we all have to deal with it at some point in our life.
As well as the obvious and social accepted form of grief, I’m dealing with other kinds right now. I’m trying to deal with it all, as well as all the other parts of adulting.
The more I adult, the less I want to. I’m really relating to this quote right now.
Image Description: A two frame scene from Greys Anatomy, the quote in the frame says “We’re adults. When did that happen? And how did we make it stop?”
Sometimes all you can do is your best, and that just has to be enough. I just wish it felt like it.
Video Description: The video is of me in my electric wheelchair on the ramp outside my house. I am waving as I speak.
So this wasn’t the post I was planning to scare today. I’m still of two minds as to whether it’s time to start writing on this blog again yet. Does anyone else get the feeling after you loose someone that’s it to soon to start getting on with life? But at the same time it’ll always be to soon and you’ll have to start getting on with things anyway?
Today my chair cut out on the ramp outside my flat. It has temporarily been fixed and I am waiting on the engineer to get it fixed properly, so don’t worry I am no longer stuck on the ramp. And thankfully I had people that were able to help me with this situation.
But it kind of ruined my plans for the day. Which was only going to get my flu vaccine, so it’s not the end of the world, but still. It’s really frustrating when something to do with my disability ruins my plans for the day. It reminds me that I’m not really in control of my life, my condition is, or the technology I use is, I suppose.
This is the reality of a life spent relying on technology. Some of us have no choice in our reliance, but that doesn’t stop the technology being fallible. Something can always brake, something can always go wrong. And it stops my life in its tracks when that happens.
When it happened in all honesty I just didn’t know what to do, because it had never happened before. One advantage of this, other than at least for today not having to get jabbed in the arm, is I now know what to do if this happens again, though obviously I hope it doesn’t. And it happening today it’s not the end of the world.
My chairs being fixed now as I finish this post. But here’s an important reminder if you or someone you know is reliant on technology to live there day to day life. Technology will have faults. It will most likely stop a person being able to do what they want to with there day from time to time. It’s not their fault and they feel bad enough about it, so don’t make them feel worse about it.
If you’ve wondered why I’ve been away, that’s why. And coincidentally today is the day I find myself wanting to write again.
It’s difficult after someone dies, not knowing when the appropriate time to start your life again is. But one thing I have noticed that is different with loosing my mum than loosing my dad, is that my life started again much sooner, it had to.
When my mum died my dad was there to do all the things that needed to be done. My dad kept life going and we got to grieve a little more. But when my dad died those things fell to me and my siblings. And we had to pick life up and keep it going.
There’s a lot of mixed emotions when someone dies, and loosing my dad has caused such a dramatic change in my life that it’s caused a lot more. I suddenly have the responsibility I’ve wanted for a lot of my life, I’m suddenly needed in a practical sense to do things.
It’s strange.
I’m an orphan now.
But at the same time I’m suddenly an adult.
We’re yet to have the memorial. I’m kind of worried what happens after that, when it’s all done and this is just life now. But I guess we’ll cross that bridge when it comes to it.
Image Description: Misa on Wheels “Those who have never experienced Inaccessibility do not get to tell those who experience it every day how to feel about the issue, to be grateful, or that the current system is good enough.”
What personality trait in people raises a red flag with you?
Seems pretty obvious I know, but it’s hard to trust a liar.
It’s the little lies that really bug me, and I often can’t verify due to my disability. But it leaves you doubting people and not being able to verify anything.
Just tell people the truth, especially when they trust you, especially when they have no choice but to trust you.
My Inaccessible Life 