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neuroticboyfriend · 1 year

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tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

#softspoonie #disabled #disability #chronic illness #chronically ill #spoonie #spoonie tips #chronic pain #chronicpain #chronic fatigue #actually chronically ill #self care #interoception #neurodivergency #actually neurodivergent #neurodivergent #neurodivergence #health #self help

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disabledprincesses · 2 years

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❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️

For all my over-heating spoonies out there:

While doing chores/moving around, if you start to get really warm, put ice packs in your pockets, 10/10

Drink lots of ice water, but not all at once, your body might freak a little and go nauseous

Have a large amount of tank tops in various colors, when you go out and have to look a bit more formal, use a cardigan/very thin jacket so you always have the option to take it off

Spray bottles on mist form <3

Sometimes resting, or laying down, helps to cool off cause you're not using energy

Keep your bare feet on the cool tile/wood/etc. as often as possible

Bowl of ice in front of a fan works weirdly well

Popsicles, but make sure they're not high in sugar/dairy/etc. because those can make it worse

I know it would seem like tiny tight clothes would be best, but make sure your clothes aren't tight, you don't have to wear long flowing capes and gowns but having shorts that are cotton/loose are always much better.

The backs of your arms (the upper half) your feet, and your knees are often colder than the rest of your body, utilize that

❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️

#disability #disabled #spoonie #chronic illness #chronically ill #chronic pain #pots #fibromyalgia #dysautonomia #hot flashes #overheating #tips #spoonie tips

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onceuponaroast · 10 months

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Alright let me turn you guys onto something real quick. Are you disabled? Depressed? Bad at cooking or just generally very busy? Do you feel like you'll be sick of you even think about another box of Mac n cheese?

Then I have the food for you: Mother. Fucking. Frozen. Potstickers.

They are even Easier to make than boxed Mac n cheese. Stick em in a hot pan with some water and cover with a lid. Cook for however long the directions say (my brand is about 5 minutes). Microwave some sauce if you want. Then BOOM: Full meal with something that has protein and vegetables in it.

They're delicious and bite sized, so they're easy to eat And easy to portion. If you shop in bulk like I do you can get massive bags that can last weeks to months depending on your eating habits.

Those delicious little buggers have absolutely changed my life. I am eating vegetables! More importantly, I'm consistently eating- because even on days when I just don't have the energy to even think of what to cook I can yoink these out of the freezer and be sitting down to eat in less than 10 minutes with minimal dishes.

Also, if you're someone with good and bad days you can prepare your own in advance! Make your own sauce or wrap your own potstickers and freeze them for later. This is a meal that never loses.

#frozen potstickers yall #seriously #fi talks #adhd #depression #mental health #physically disabled #disability #disability pride month #cooking tips #disability tips #cw food #spoonie #spoonie tips

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an-undercover-bi · 1 year

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I am having to deal with so much Disability Services bullshit at my university right now so. . .

Here’s a sick academia-related tip for every chronically ill person out there:

Document. Everything. For real.

• Take detailed notes during accessibility-related meetings.

• Print out any accessibility related emails (your emails you send, their emails they send) with the dates clearly specified.

• Record the accessibility meetings themselves*.

It’s also worth noting that simply choosing not to delete the emails you send may not be sufficient depending on the email provider’s policy regarding old emails and how stable your internet connection/access to internet is.

So, paper copies are best.

To keep the emails: print them out, stick them in a folder or a binder and use sticky tabs to label the general subject discussed.

Trust me. This will come in handy.

You have rights. Exercise them.

* Check on your country’s/state’s laws prior to recording others without gathering consent first. These vary by country and locality. In my state—Virginia—it’s a single-party state, so only one “party” [in my case, me] needs to know the meeting is recorded). Make sure you know the laws in your area regarding this before you record.

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desertwaterwitch · 1 year

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I did it! I got a shoe thing to hang next to my bed like this post suggested for spoonies!

It came with two. I got smaller ones because I can’t fit a longer one there and I don’t need a ton, anyway. Also they’re on Amazon.

I’ll go from top to bottom:

1. Hygiene (not a huge deal if I can’t always get to it)

2. Medicines for colds and all that crap that I get all the time. My immune system hates me.

3. Other things like thermometer, ibuprofen, cough drops. I need ibuprofen quite a lot for my lovely conditions.

4. Bottom left is all for nausea. I have nausea patches, Dramamine, a nose thing that doesn’t really work well, and one of my medications I use for extreme nausea when I can feel a flare up coming for one of my conditions. I am always trying to feel around for it and now it’s there. I often knock it over.

5. Fruit snacks. And other food will go there. It’s for when I need food for several conditions. I’m not going into it, but yeah.

My daily meds are in their container on my table still. And my water bottles are next to my bed on the floor. I may add something else but I don’t know if I want to have that there or not. 🧐

PS: it’s crooked but I used too many spoons to care lol

I also keep ice packs in my mini fridge next to my bed.

#spoonie #actually disabled #disabilities #chronic illness #chronically ill #spoonie tips #disabled #medication #spoonie hacks #chronic nausea #my immune system hates me

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yasemin-writes · 1 year

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Dental Hygiene x AuDHD

I don’t know who needs to hear this but…

…you can brush your teeth wherever you want

…whenever you want

…for however long you want

Shower? Cool.

Sitting in bed? Cool.

30 seconds at 3pm in the office bathroom? Cool.

#adhd #spoonie #low spoons #audhd #actually autistic #actually neurodiverse #spoonie tips

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glittergutts · 2 years

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My "go bag" that has everything I need for 24 hours minus clothes. Not pictured: giant medication box.

There's a zillion outside pockets. Here's what's in them:

hand wipes and sanitizer, 2 sunscreens, oil blotting sheets, make up wipe, extra scrunchie, lip balms, magnesium and electrolyte mix, and a green muscle recovery tea.

A metal straw, a reusable shopping bag, umbrella, and perfume.

Mini first aid kit with band aids, ointments, and gauze.

The inside pockets and what's in them:

Coloring stuff and Filofax planner.

Fidget toys!

Rollers/ essential oils.

Wallet, keys, head phones, cord.

I also have 2 bags inside. The first aid one also has my daily medications.

I have some gingers, benadryl, pepto, arnica pellets and salve, eye drops, inhaler, magnesium spray for sore muscles, PRN medication, and a mini sewing kit.

The second bag is skincare and make up things.

I have this bag ready so if I have to go somewhere unexpected I won't be so anxious about what I might need because it's all already together:) thankfully I haven't had a trip to the ER in awhile but I packed this with that in mind.

Anyways, I hope someone finds this helpful. Thanks for reading!

#personal #mine #actually autistic #spoonie #spoonie life #whats in your bag?#whats in my bag #spoonie edition #spoonie tips #fidgets #fibromyalgia #chronic illness #chronically ill

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opalsiren · 10 months

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you there. person who has to take medication on the daily. get yourself one of those pill reminder boxes. mine is a daily rainbow-coloured one (unfortunately from am*zon 😕) but you can get twice daily ones, ones that you fill for the entire month, etc. i refill mine for the following week every sunday night, and not only does it help me to actually remember to take my pills, but having to think about dosages and the like only once a week rather than every single day has freed my brain from so much undue stress. 1000/10 would recommend

#i legit should have done this years ago lol #especially if you take more than one medication!!#you can get fancy ones with timers that go off at certain times too they're so truly soooo good #.txt #spoonie #chronic illness #chronically ill #chronic pain #spoonie tips #spoonie life hacks #medication cw

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niqilarch · 8 months

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So my week has been pretty rough. I tweaked my back getting out of a chair and tripping on an old cat. So my mobility has been very slowly returning with hot and cold packs stretching and meds. Rest and forced shuffling to get to bathroom. How I got around before we used the hallway as a pantry was using a modified walker Ir even wheelchairs. But food Camelot sale was good. So I used already through the dryer sheets to slip shuffle my way. It is so much easier than

Anything else I have and requires the least amount of muscle movements. Too bad I couldn't shuffle down the stairs.

And to end my week

#fibromyalgia #fibro flare #spoonie tips #spoonielife #chronic pain disorder #shuffling

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sucreetsal · 2 years

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A self-care tip for people with brain fog that's saved me just now - document how to do stuff.

I'll sometimes get confused or doubt how I do something I've done a billion times. I'll forget logins, or which folder I've saved important documents I need.

I have a login manager that sorts out logins, pins, and passwords for me.

But I also really need and rely on a free wiki-style notebook (I'm talking about notion.so, but even notes app on a mobile work great if you create a tag or folder first) where I will create a whole page about something I need to manage, write down contact info, historic info I might need to make sense of stuff going forwards, where supporting files, receipts, or documents are (in the computer as links, or in the home as directions).

I have routines associated with it written down, and break down how I do things that I know I will get muddled with (for work, it can be something simple like "directing a new domain to a webspace on my server", "setting up targeted Facebook ads", or step by step tax returns a zombie could follow.

I'll keep records of spending and repair estimates so I don't get blindsided cos I forgot that thing happened this month and threw everything else off, or that the estimate was x but the repair took place in Y and that means it affects next month.

I will make step by step to do templates in something like asana or todoist (both of these allow almost infinite subtasks) so there's no thinking involved for important stuff on bad days. I use a timer while doing them following the templates and record the time, so I know that even on my worst day, It's never taken me longer than XX minutes to do this task. And that helps me manage anxiety about how long various things will take and therefore how much energy I need/ how many spoons it will cost me. That timer is the difference between me doing something today or this weekend.

Anytime I can't follow my own to-do template, I update it so it has everything I need to just click and action the next step. Some of the steps are as simple as "download this file", "copy it and save here". But having them as unique steps I can tick off really helps on bad days, because I can see a little streak of green checks and feel like "this isn't so bad, I'm doing it, look, I'm a quarter through already".

#brain fog #self care #productivity #productivity for spoonies #disabled productivity #planning #organisation for brain fog #spoonie tips

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mental-mona · 10 months

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Yes, this is nominally about migraines, but it's really about ALL doctor-patient relationships & interactions.

#doctor patient relationship #doctors #doctor visits #spoonie tips #chronic illness #migraine #mham #living with migraine #living with chronic illness #spoonie life #migraine management

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neuroticboyfriend · 10 months

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pro tip for disabled people (especially autistic people) that i just realized after literal years of chronic illness...

when a health professional asks how you're doing, it's not small talk. they want to know how your health has been. do not reply "good." if you seem them for chronic pain, talk about your pain. if you see them for mental health, tell them how you've been feeling. etc. etc. again... don't reply "good." jump right into it and be honest about your health.

#softspoonie #disabled #disability #mentally ill #mental illness #autistic #autism #autism spectrum #chronic illness #chronically ill #chronic pain #spoonie #spoonie tips #healthcare

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disabledprincesses · 1 year

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I'm going to be staying in the hospital for 5 days for a long-term E.E.G. session. Any tips for hospital stays?

#hospital cw #hospital stay #eeg #actually epilepsy #seizuredisorder #spoonie tips

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ethereal-stag-syndicate · 2 years

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Low spoon day

today we had a low spoon day and it's kinda hard for us to stand for a while! but we need to clean the microwave and go for a walk. Does anyone have any tips?

#spoonie #no spoons #low spoons #me cfs #chronic fatigue #spoonie tips #chronically ill #chronic illness #pls help

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desertwaterwitch · 1 year

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Hey all you spoonies! 🥄👋🏻

I have a suggestion for you, if you can make it happen.

🙌🏻 Mini-fridge in your room. 🙌🏻 Even better if it’s close to your bed.

It’s a life saver for me. I keep two ice packs in the tiny freezer part and water and drinks in the main part. I often need ice packs for my conditions, since I overheat sometimes. And also, for the epilepsy, which is only one of my conditions, I’ll get massive headaches after, even for the small ones. So I just grab an ice pack and when that’s no longer cold, I switch it for the other.

I’m aware not everyone can get one, but if you’re able, I recommend it! I got mine at Walmart in 2017 and it’s going strong! It’s so much easier than having to constantly call someone to your room to get you a new ice pack or whatever it is you may need in there.

Keep going! You got this! 💪🏻

#spoonie #spoonie hacks #spoonie tips #chronic illness #actually disabled #disabilities #mini fridge #ice pack #actually epileptic #epilepsy #seizures

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the-spoonie-life · 1 year

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Hi, I'm writing in the hopes of you or anyone following you maybe having a bit of advice, if that's okay. I'm in that situation where doctors keep dismissing me and putting down the cause of my symptoms down to not being thin enough/psyochosomatic in origin/needing therapy/being a perceived as a woman. So kind of the unfortunate standard.

All this has lead me to doing my own research and I think I have an idea what might be going on but would like an official diagnosis to get access to care. (Based on symptoms, what we're ruled out already, and already diagnosed but not further specified hypermobility, I'd like to get tested to see if either HSD or hEDS apply in my case.)

That said, I keep being dismissed by my rheumathologist and finding a new one isn't a possibility at the moment. My primary care provider is only willing to refer me to someone else after a series of out of pocket tests like vitamin D tests and the money is tight for me (he is taking me seriously but very much thinking about horses rather than zebras, which is perfectly understandable, if frustrating). I switched to him seeing as he came recommended due to working with his patients and I genuinely understand why he wants to (re)check some basics before going down rabbit holes. I've simply been at this for a few years now and would like to be able to stop moving in circles.

I'm aware differences in healthcare systems make any specific advice hard to impossible but anything that might work towards being taken seriously would be so appreciated. I feel very exhausted and am at the point where all I want is to stop pursuing a diagnosis if only to not feel like I'm wasting time by just trying to get someone to listen.

Have you any advice to keep my spirits up? Or been in a similar situation and there's something that worked for you, in the end?

Hi anon,

This situation is the absolute worse so I’m hoping people might have some suggestions and advice for you.

Unfortunately the only thing that has worked for me in these situations is preserving and luckily finding some very good doctors using health insurance. I know this isn’t ideal though.

Just remember you know you’re body beat so if you feel like something is wrong it probably is.

I really hope you get some success soon and hopefully other people can offer some advice too.

Anastasia

#spoonie #spoonie life #ehlers danlos syndrome #chronic illness #spoonie problems #spoonie stuff #spoonie asks #hypermobile ehlers danlos syndrome #hypermobile eds #hypermobilty syndrome #doctors #tests #medical advice #medical tests #spoonie tips #spoonie advice

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