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I know no one actually sees it, cause I don't ever complain or talk about the very rigid and particular limitations of disabled life, how each and every day I have a specific limit of the amount of things I can do in each part of life and how well I can do them.
Simple things, none of you think about. Things like "how many times can I lift my arms above my head before it becomes a problem", "if I fold this laundry, will it put me over my limit for the day and leave me in extra pain tomorrow?"
Literally each moment of every day is a balancing act, choosing which tasks and things are worth taking the hit for and how much I can do while still recovering enough tomorrow so it doesn’t become a problem that keeps building up.
So many times someone will ask me if I can or will do something and I have to decline, not because I don't want to, simply because if I do, it will off set the balance of my life enough that I'm going to suffer for it. And yet every single time it feels selfish to say no.
Every single time, even with people who seemingly understand what its like to be me, when I turn something down or say no (especially repeatedly), it starts to feel like I'm letting them down (and often they feel let down).
The lack of understanding from abled humans, its understandable. It doesn’t make it stop hurting, but it makes sense. You don't see the math that goes in to figuring out every little detail of what I'm able to do in a day, the amount of balancing and self restraint it takes.
I was thinking about all this the other day because there was something I desperately wanted to do, it seemed to small to someone else, and to me it was a massive hurdle and something I had to eventually say no to.
I know my boundaries and limits, and as unfortunate as they are, they are hard limits. Being disabled isnt something you can reason with. You don't get to change the rules because you want to, you can *try* and you will quickly learn you regret it. That's the cold hard truth.
Anyway. This is all disjointed, has no real purpose or meaning other than that I wish more people would read up on spoon theory and try to take a look at what the balancing act of living with chronic pain is like.
I wish more people would bother to try and empathize and understand that when I say no to something, its not because I don't want to, its because I am not allowed to because of the confines I exist in.
So that’s that then, a brief insight in to living with chronic pain and a hidden illness. A rambling thread that doesn’t really go together, but some thoughts I've had in my drafts for a while and decided to just unload all at once.
All I am really asking out of this is that please try to be respectful of the disabled, chronic illness & chronic pain humans around you and remember that while we want to do everything, we just can't.
And please, stop calling disabled people lazy. You have no idea how much work it takes to be constantly forcing yourself not to do things you want to do and how exhausting it is to just exist within your own skin.
If you made it this far, thanks for listening. Please go read up on spoon theory.
Having finally finished writing this, I'm realizing it was enough to imbalance everything today. That's how delicate the it is for me & how easy it is to screw up. So yay, a day+ of increased pain to look forward to from this. Hope someone learns something from it.
