Collected cutlery - a spoonie sideblog

[collected-cutlery]

Energy Accounting in Autistic Burnout - Dr Alice Nicholls

Energy Accounting, originally developed by Autistic Clinical Psychologist Maja Toudal, is a way of viewing energy as a limited resource you

I've always felt like, as good as it is, spoon theory was never nuanced enough for how I experienced energy issues with my chronic illness. For many years, I'd already been thinking of my spoons in terms of 3 categories - physical, mental, social - so it's nice to see others have come to similar conclusions and for there to be a more expansive theory on that too.

I strongly suspect I am autistic, and reckon I've been experiencing autistic burnout the last year or so, so the above is very relevant to me in several ways. But I'm curious if non-autistic spoonies find that splitting up of energy into categories helpful too? I'd tried before to explain it to a few spoonies I know but often found that categorisation made people question things, made me feel like they thought I was misappropriating spoon theory somehow by not always being depleted of all 3 types at once like it sounded they would be.

[classycookiexo]

Hopefully this tip can help anyone

[collected-cutlery]

Do you ever just have so much ennui that you can't sleep ontop of usual insomnia. Ableism is making me rage today and I feel like only other disabled people really understand it.

[mysharona1987]

[nekojitachan]

https://nerdbot.com/2021/01/09/new-pill-bottles-for-shaky-hands-will-help-people-with-parkinsons/

[peachdoxie]

This makes me cry, actually.

[thesharpestlance]

Just to add on. Libraries in many cities have 3d printers you can use that charge you only the price of materials. So if you can't wait for the shipping from the engineers, try your local library.

[cricketcat9]

Humanity at its best 🤗

[screenshotsofdespair]

[davinky-deactivated20210909]

me after my 15 min break at work

[optimisticbananaharmony-deactiv]

me after sleeping a healthy 8 hours

[frottinq]

me at the end of a two day weekend

[collected-cutlery]

Shots Fired

I wonder still, if every time I say

'I am disabled' a filter slides into place

That each hour worked is then an inspiration

Is a joyous reason for celebration

Of productivity that is needed

To be judged worthy, of trying

Do they only see the shot fired into the air

Like a firework high above me

Reaching so much further than expected

But they just see my survivorship

They see everything that I manage despite

They do not see the shots that hit my body

The damage done, the cost of continuing on

Pretending to be capable

Because what will they see if

I do not do enough, if I am too much

A burden, a bore

So I shoulder the cost

With each joy I strike off my list

Every sacrifice that I'm not allowed

To say, because I must try

And be thankful

[flamingfalcon3]

Autoimmune disease gang!

[collected-cutlery]

Poem - What if

When people, normal people, say

'what if'

I suppose they dream of a day that went differently

A Choice B instead of Choice A,

sliding doors that shut out the bad decision

A Capital Letter decision

One they can switch tracks on

A way to enact control on their life

They dream of that moment split off from the original

Something they had utter control of

Something to do differently, in hindsight

When I dream of a 'what if'

It's

what if I knew what I know now

Hardly different from theirs, except

what if I knew the reason for the wasted years

what if I knew the reason for my pain and my tears

what if I knew where to look, where to point the clueless

...and what I always come back to is,

that I never had control, never had a track to switch

I knew back then there was more to it,

begged and pleaded and read until bleary

but they barely listened, they pushed aside anything that didn’t fit

neatly into the easiest form to twist it into

so, it was a capital letter decision, for sure

a decision that wasn't mine

what if

What If

they just aren't listening

time was never on your side

and no amount of hindsight changes

my biggest fear

it doesn't matter what I say

[collected-cutlery]

I don't think any abled friends have been able to properly appreciate how traumatizing this last year has been as a disabled person.

I ended up mostly avoiding media and discussions because every time I'd see people arguing freedoms over protecting 'the old and the ill, who should be left to die', that includes me, I'd die a little inside anyhow. Knowing that large groups of people can't even be bothered to wear a mask properly as a basic measure to help public health makes me start to lose my faith in humanity.

It's like regularly having one of my worst fears, that I'm a burden to society, negatively reinforced on repeat. That a not insignificant chunk of people think I should just be left to die is soul destroying. I try not to let what other people think affect me too much but knowing that lack of care can't fail to affect me.

That and the reminder that accommodations companies wouldn't do individually for potential disabled workers are suddenly easy to implement for everyone else when needed en masse are just awful cherries ontop of a horrific sundae of bitterness this last year inspires.

I wish I could be hopeful but people also didn't care about the situation with benefits before it affected your average person rather than just those in poverty or disabled. It took universal credit 16 months to find me disabled based on the evidence I gave them only 2 months into my claim and to give me extra help. Meanwhile I struggled to meet their demands to work an agreed amount of hours per week that wasn't good as someone of variable energy. I only managed to pay all my bills once the covid related increases happened. I'm doing okay now financially but it feels like luck more than because anyone cares if i survive.

[cowsparsley]

[norahjakobs]

Hey shoutout to

People with “minor” disabilities who aren’t sure if they belong in disabled spaces

People who have rare disabilities and don’t see other people with the same disability, even in disabled spaces

People who’ve been told nothing is wrong with them even though is something clearly wrong that now feel like they’re just making stuff up

People who have been dismissed by doctors because they didn’t fit the image the doctor had of what a “sick” person looked like

People who tried to get help for their problem and are still waiting

People who have unaddressed health problems in general

Y’all are great and deserve the world!

[crps-chronicpain-ptsd]

“#SelfCare is vital…I’ve found it so hard… To have a rest day, or a bad day in bed when I can’t do anything, I find it tough to not feel like I’m letting people down. But I’m learning to accept it‘s what I need to be able to give on other days.”

Chronic pain problems •

[cl0udhopper]

Ok so I’m posting this for myself as much as anyone else so I might be a bit of a hypocrite, but please don’t be ashamed of the accommodations you need. It sucks to think that you ‘aren’t disabled enough’ or that people judging you is important enough to not use something that makes your life easier. Work on breaking out of that mindset because it’s not true; it’s just the internalised ableism talking when you have those thoughts. You deserve your accommodations and you aren’t bad for using them.

[stars-and-branches]

One of the main ways I've learned to cope with chronic illness over the past ~decade is to work with your body, not against it. Sometimes it means learning where your limits are and the signs your body gives when it reaches its limit. It's coping strategies learned through trial and error: like spacing out work, writing down things you want to remember, stashing food and water under your bed for sick days, and packing your purse/bag with things you need if your symptoms start acting up.

It'll take more time and work to cross the finish line than it will for your abled peers, but you can get there. But even if you can't? Learning how to live in the flesh vessel that houses your soul makes life a little easier.

[lifewithchronicpain]

One lesson I have taken to heart in order to complete long term tasks is that “half assed is better than no assed”. In other words, people will say you shouldn’t half ass something, not put all your effort in or complete your goal. Maybe that mentality works for some because if they let themself get away with only doing a little they’ll never do it all. However with disability, I find only doing a little is sometimes the only way to to get anything done.

For example, my online class requires personal discipline and I because of illness sometimes I can only focus for so long before I get nauseous, a headache or something. Sometimes I would feel like I shouldn’t try if I couldn’t complete notes on a segment. And then one time I let myself only take notes on the first 3rd of a video. I still got it done. If I had not started I may have never finished.

Last night instead of blowing off my exercise because I felt I couldn’t do a full 20 minutes, instead I did 10. I feel better for having done something instead of nothing. Yet a capitalistic, go getter culture will say “if you did 10 why not push to 20 or 30 minutes?” 20 minutes is better than no minutes. My goal isn’t to punish myself it’s to work on my blood pressure. 10 minutes of good exercise is still worth a lot towards that goal.

Don’t let the amount of what you can do at one time deter you from the bigger picture. Whether you fill a bucket with a cup or a pint, it will get filled.

[collected-cutlery]

Staying Sane in Self-isolation Challenge — Week 3

Hello, it’s nice to come back to this challenge. This week got delayed because last week there was already too much on my plate that was…

Week 3 got postponed due to lack of spoons, but I’m back on challenges during self-isolation again this week. :)

[collected-cutlery]

Staying Sane in Self-isolation Challenge — Week 2

Week 1 went by fast for me, particularly with the wardrobe clear out taking up my time (and a lot more time than expected — still some…