Hi! Have you ever asked a disabled person why they waste their energy on something?
If so, you may have been sent this video so that I can explain, and tell you to shut the hell up.
Being disabled or chronically ill obviously impacts on the amount of energy that you happen to have.
Especially if you have a condition like chronic fatigue syndrome. So from the outside looking in
you may wonder why that person who has a finite and limited amount of energy resources
bothers to use their energy on things that you deem to be a waste, and unimportant.
Here are three main reasons why that's wrong and you should never tell someone that. Don't do it.
Number one: It is my business what I spend my energy on. My business.
Unless it directly impacts you, stay out of it, I guess? It would be quite a bad thing to say
I don't particularly like anyone who looks at someone
from the outside of their life and decides to judge them for how you perceive their life choices to be
how you think they are living their life without actually being aware of how they are living their life.
I think this applies whether you're a friend or a family member
Just because you are related by blood does not mean you understand everything that's going on in a person's head.
And you may see them and you may think "oh! you should be using your energy surely on
reading books rather than reading this trashy magazine"
Maybe they read books all day long and, you know they're just taking a break to read the trashy magazine
or, maybe they just want to read a trashy magazine
You know, either way, still none of your business.
Number two: following on from the trashy magazine thing,
people who have disabilities and chronic illnesses have to use their energy
for things that you don't really think about when you're able-bodied
It might be that it takes twice as much energy to have a shower as it does to someone who's able-bodied
you don't jump in the shower, [pfff] and you go and you're off
But someone who's disabled oh my god it takes so much extra thinking, extra work,
It's physically, really demanding as I explained in my spoons video
If you don't know what spoons are, you can check that out, we'll put the link down in the description
and in a card above, so you'll know what I'm talking about.
So all of that energy has to go in pretty menial tasks and things that are just bloody boring to be honest.
You know? I have to spend 80% of my energy everyday on things like feeding myself
and putting clothes upon myself and even going to the loo like literally the physical
getting up, getting to my toilet, getting back from the toilet... It's a lot of energy basically it's what I'm trying to say.
Also the annoyance of having to take your clothes on and off - if you ever wonder why I wear skirts,
that is part of the reason because doing up trousers takes like half an hour for me.
And then of course I have to spend my energy just on
staying alive
which seems to take three times as much energy as it does for other people
because my body is trying to redirect my energy into healing itself which is something it will never be able
to do because my DNA is broken but boy, boy does it try.
It has a really good go, and that's, that's very noble of my body but I'd appreciate it if it stopped.
So that's part of the 80% as well that 80% is actually yeah life-saving and
Vital things need to do every day but it's pretty boring
So I want to take that 20% of extra energy, and I want to spend that on doing my own makeup, and my hair,
And getting really upset about the final of the bake-off (God damn it)
then that is what I will spend that energy on
because it's fun, and I deserve that.
Number three: energy can also be "wasted" on things that aren't fun, and also, aren't essential.
And this might, in my case especially, just be down to personality.
I have a theory that if I were not disabled, I would be a very different person.
Such as, I ruddy love a spread sheet, I do, and I love to be precise about everything.
I would adore if everything in my life had its very special little place and was categorised
and colour-coordinated and coded, and... oh hello, hi!
I would love to spend all of my energy on these kinds of things
on making a pin board where everything is perfect and precise. Ahhh!
I'd also like it if everything in my house was really clean, and really really tidy, I don't have the energy for that.
My personality wants it to happen, my personality wants me to go go go go every second of every day,
Spend 110% on absolutely everything, and make absolutely everything as perfect as it possibly could be,
my energy levels aren't really there, so I don't get to do that, I don't get to be myself and be who I really am
so I kind of have to just let things go, I have to be like, oh you know,
I don't really have the energy to tidy this today, ergo, it's just it's just gonna be there.
If I'm putting a picture on Instagram, I want to be able to spend time and energy on making it absolutely perfect
and precise and that makes me so happy it's almost difficult to explain
because, I'm tapping into a part of myself that would like to be out there
making everything perfect, putting lots of energy into everything, but I can't do that, I have to let things go.
But sometimes, sometimes I indulge a little bit of myself
And by doing so I feel more like me and this is where the third part of this is so important
because there is no such thing as wasting energy
if what you're doing is making you feel better about who you really are
despite the disabilities or despite the chronic illness the fatigue the whatever it is that is holding you back
having just a few moments in a day to really indulge yourself
to really show off who you really are, to just let yourself be that person
is vital and amazing if you're a really incredibly sporty person that's who you are and you want to run everywhere
But you have a condition that means you can't really run, you can't do that, no,
but maybe, just, maybe for five minutes a day you can. You go.
But then you're extra-specially knocked out afterwards
and you're really you're just gone you're pretty useless yeah you got no energy
people can look at that from the outside and they can say
"What a waste! Why did you bother spending your energy on that?" But what that person was doing
was making them feel really good about themselves it's a kind of, tragedy
of disabilities and chronic illnesses that they bury who we really are sometimes
we become subsumed, our actual personalities are here, and then we have this veil of the disability
the way the world sees us the things that we have to do to look
after ourselves and if we can have just a few moments
To "waste our energy" by indulging who we really are
who we would be then surely that's not a bad thing
So there you go, there is my little explanation in why you should never tell someone that they are "wasting their energy"
Don't do that! I hate it! And other people do too!
Don't do it. Thank you so much for your lovely comments about our announcement about going to Malaysia! yeah!
If you haven't seen it already I'm gonna link down below in the description or you can just click the card above. Yes!
and of course there will be a lot of energy management going into that
And I'm gonna include that in my videos as well. While we're out that would be saying how you can travel
and not "waste" all of your energy
That was a single bunny ear, does still work? "waste" all of your energy
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