Tumgik
Text
Crowdfunding for a tech upgrade
Hi all! I'm running a crowdfunder to help me upgrade my laptop in preparation for [hopefully] record-breaking respondents in 2022 - can you chuck in a few £/€/$, or reblog, or something like that? :)
The deadline is 29th September 2021!
364 notes · View notes
Photo
Tumblr media
Bedridden clothing hack - Gap-back T-shirts
If you cut a gap in the back of your T-shirts, you can slip them over your head then put the rest on while lying flat by just lifting one shoulder off the bed at a time. For those who need to lie flat all the time, this can save a LOT of energy in getting changed.
You may find that gaps which are wider or narrower or closer to the collar or further down suit you. I had to sacrifice several shirts to find the right size to suit me. If you keep the bit that you cut out, then once you find the perfect shape for you it’s easy to replicate on other shirts by using that bit as a pattern.
This one is newly cut but I’ve had others that lasted for years and none ever frayed enough to worry about, so don’t bother hemming or interfacing the cut bit. Also anything you add can be uncomfortable to lie on.
457 notes · View notes
Text
Yesterday my boyfriend told me "you're not any less of a person just because you can do less things" and I wanted to pass that reminder on to other physically and mentally ill/disabled people who might need to hear it.
79K notes · View notes
Link
This is a fantastic list of activities for people who are very severely bed bound - congrats to Sarah Stanton for putting it together. It’s pitched to people who are sicker than I think the average Energy-Saving Self Care reader is, and it’s a group of people who are usually forgotten in everything so that’s fantastic!
644 notes · View notes
Text
i’ve started replacing “i want to die” with “i feel overwhelmed” in my internal monologue, which is usually more accurate and more productive
80K notes · View notes
Text
When they say "do your best", they generally don't mean "push yourself so hard it has serious consequences for your mental or physical health." Your best effort is supposed to be sustainable.
15K notes · View notes
Text
I'm begging ya'll not to skip medication/therapy/doctors appointments because you've been feeling better.
You're feeling better because of your regime. Because of the time & effort you have put into treatment. Don't set yourself up for a relapse by skipping.
8K notes · View notes
Text
I know people mean well when they say "you should care about disabled people because one day you might become disabled too!!" but like... you should just care about disabled people anyway without seeing disability as some big evil threatening thing that could strike you down some day
It's just kinda shitty because it's really just seeing disability as a thing to pity and be scared of
Just care about disabled people regardless. Care about us because we're people too and actually listen to us
Abled people can and should reblog but don't fucking clown about in the comments
2K notes · View notes
Text
I personally wanna see less 'you are not a burden/it's not work to love you' and more 'you are worth the work it takes to love you.' I KNOW I'm a burden sometimes. that isn't such a terrible thing! humans are strong. we can carry burdens. and it is work for me to be there for my friends, but it's work I'm willing to do.
we need to acknowledge this because pretending love isn't work will never make people like me feel less guilty for accepting love. we need to talk about it so people don't feel bad for having boundaries and not always being up to do the work. we need to accept it so we can properly appreciate what others do for us and what we're doing for them.
yes it does take work to love you. but guess what? you still deserve love, and you deserve people who are willing to do the work to love you. it doesn't make you bad. all love take work. and everyone is worth it.
151K notes · View notes
Text
The inability to receive support from others is a trauma response.
Your “I don’t need anyone, I’ll just do it all myself” conditioning is a survival tactic. And you needed it to shield your heart from abuse, neglect, betrayal, and disappointment from those who could not or would not be there for you.
From the parent who was absent and abandoned you by choice or the parent who was never home from working three jobs to feed and house you.
From the lovers who offered sexual intimacy but never offered a safe haven that honored your heart.
From the friendships and family who ALWAYS took more than they ever gave.
From all the situations when someone told you “we’re in this together” or “I got you” then abandoned you, leaving you to pick up the pieces when shit got real, leaving you to handle your part and their part, too.
From all the lies and all the betrayals.
You learned along the way that you just couldn’t really trust people. Or that you could trust people, but only up to a certain point.
Extreme-independence IS. A. TRUST. ISSUE.
You learnt: if I don’t put myself in a situation where I rely on someone, I won’t have to be disappointed when they don’t show up for me, or when they drop the ball... because they will ALWAYS drop the ball EVENTUALLY right?
You may even have been intentionally taught this protection strategy by generations of hurt ancestors who came before you.
Extreme-independence is a preemptive strike against heartbreak.
So, you don’t trust anyone.
And you don’t trust yourself, either, to choose people.
To trust is to hope, to trust is to be vulnerable.
“Never again,” you vow.
But no matter how you dress it up and display it proudly to make it seem like this level of independence is what you always wanted to be, in truth it’s your wounded, scarred, broken heart behind a protective brick wall.
Impenetrable. Nothing gets in. No hurt gets in. But no love gets in either.
Fortresses and armor are for those in battle, or who believe the battle is coming.
It’s a trauma response.
The good news is trauma that is acknowledged is trauma that can be healed.
You are worthy of having support.
You are worthy of having true partnership.
You are worthy of love.
You are worthy of having your heart held.
You are worthy to be adored.
You are worthy to be cherished.
You are worthy to have someone say, “You rest. I got this.” And actually deliver on that promise.
You are worthy to receive.
You are worthy to receive.
You are worthy.
You don’t have to earn it.
You don’t have to prove it.
You don’t have to bargain for it.
You don’t have to beg for it.
You are worthy.
Worthy.
Simply because you exist.
-Jamila White
182 notes · View notes
Photo
Tumblr media
“Ask friends on social media for some love and tenderness. Let them support you.”
I sometimes ask friends to post pictures of their pets or any cuddly animal pictures they find online - looking at all those lovingly posted comments really helps me feel better. Do you have a go-to method for asking for emotional support online?
You can get your own Energy-Saving Self Care cards here: https://buff.ly/3krbkUP
[Image description: Card includes a photo of a post it note that reads “Love me?”, a glyph representing the five senses, and the above quote.]
2 notes · View notes
Photo
Tumblr media
“Get someone to give you a foot rub or paint your toenails for extra pampering.”
You can get your own Energy-Saving Self Care cards here: https://buff.ly/3uEQF4n
[Image description: Card includes a photo a foot being massaged, a glyph representing the five senses, and the above quote.]
3 notes · View notes
Text
Brushing Teeth While Lying Flat
These suggestions are primarily aimed at folk who are bedridden due to disability/chronic illness/etc or similar - if it works for you, do it! If you’re not sure if this might be you, take a read anyway and see if some of the things in here might help you. Generally suggestions first, then procedure second -
Experiment with what toothbrush works best for you - lightweight electric ones use less arm movement but the vibrations hurt for some; toothbrushes with large heads that clean multiple tooth surfaces at once (eg https://colliscurve.com/special-needs-toothbrush/ ) help some; I use a toothbrush with an extra small head (Clinica Advantage Compact) because it makes me gag less. It’s worth finding what works.
Toothpaste with fluoride is best if you can tolerate it, children’s paste often has a milder taste which can be easier to tolerate. Tooth mousse used after brushing( http://www.gcaustralasia.com/Products/93/Prevention/GC-Tooth-Mousse ) also helps with the mineralisation of tooth enamel. When you’re too sick to brush/floss as regularly as you’d like, your teeth need all the help you can give them.
Remember that you don’t have to brush all your teeth at once! If it’s easier for you to do half of them or a quarter at once, then do that. Any brushing is better than no brushing, so if you can’t manage all of them every day then just do some … Even if it takes you a whole week to get to all the areas, it’s still better than nothing
Another option if it works for you is to have a carer brush your teeth for you. In my experience they’ll never do as good a job as you do yourself, but it’s better than nothing. You could also do a little yourself afterwards to get the bits a carer missed, if that works for you. There are videos online to help carers learn how to best do this too
In between brushing you may find that Xylitol-containing sugar-free chewing gum, mouthwash, and/or disposable flossers are a lower energy way to give your teeth a boost.
I have a mug with toothpaste, tooth mousse, a toothbrush, and disposable flossers that sits beside my bed and I always have a bottle of water with me and space face washers or a hand towel around, so I have everything I need on hand and any time I have some energy for brushing I’m ready.
Procedure for brushing teeth while lying flat on your back in bed:
Start with the mug of stuff, as described above, and lying flat on your back
Put a dry face washer or hand towel or similar on your chest in case of spills
Put a teeny bit of paste (half the size of a pea? Minimum you can bear) on the toothbrush (if you can’t tolerate paste, this works fine with none at all)
Squirt some water from your water bottle into the mug, wetting your toothbrush
Brush teeth while lying flat - you shouldn’t have enough foam to get anywhere messy (if you do, use less paste next time!)
Remember that it’s an always an option just to do some of your teeth this time and the rest at other times
When you are done, hold the mug beside the outside corner of your moth and spit kind of sideways - you can do that without having to roll or move much
Don’t rinse! Best practice for tooth brushing is to let the fluoride sit on your teeth so just spit out what you can
If you’re using tooth mousse, put a little onto a finger and smear it around your mouth. Don’t rinse that either - it needs to sit there. You can spit or swallow it later
Wipe face with hand towel and leave the toothbrush and mug for your helper to clean
Make sure your helper puts everything back and washes the toothbrush so you are ready for next time
210 notes · View notes
Photo
Tumblr media
Fly free!
Being homebound or bedridden can very understandably make us feel cooped up or trapped. Is there anything that makes you feel freer, even if only a little?
It might be opening a window, listening to music, texting a friend, or getting someone to help you lie in the garden for a little bit … See if you can do something that makes you feel a little freer this week
[Image description: Cartoon picture of brightly coloured paper aeroplanes, with their curling flight paths lit up]
5 notes · View notes
Photo
Tumblr media
“Read past emails and letters from friends reminding you of happy times.”
I'm lucky that past-me did a great job of saving letters and cards! Email makes this easier now - perhaps make a folder to save particularly loving messages in so you can find them in one place in future?
If your loving messages are on Facebook you can press "Save post" to help you keep track of them.
You can get your own Energy-Saving Self Care cards here: https://buff.ly/2ZSv1va
[Image description: Card includes a photo of a pile of mail, a glyph representing the five senses, and the above quote.]
4 notes · View notes
Text
if your disability activism doesn’t support belligerent disabled people, disabled people who refuse meds or therapy, disabled people who don’t trust the system that’s fucked them over too many times to count—if your disability activisim depends on disabled people being nice or respectable or willing to be made into inspiration porn—it is not good disability activism.
17K notes · View notes
Photo
Tumblr media
“Find a meditation track that you haven’t listened to for a while and relax with it.”
There's a CD by Brian Weiss just called "Meditation" which is always the one I come back to. Do you enjoy guided meditations?
You can get your own Energy-Saving Self Care cards here: https://buff.ly/37SRqgi
[Image description: Card includes a photo of cassette tapes, a glyph representing the five senses, and the above quote.]
3 notes · View notes