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Jul 7, 2018 28 tweets 8 min read Twitter logo Read on Twitter
In case you are also chronically ill and planning for potential power outages or heat waves, here are some things I do or am considering doing for copes

Hopefully this will help someone else
It sounds weird but this dog pad is pressure activated cooling power. It requires no electricity and is reusable. (You can also make it RLY cold in the freezer.)

There are big dog sizes that work for my entire body…
Consider filling a bathtub or bucket/tub with cool water. Dip your feet or entire body in to lower your body temperature.
My new favorite thing is these Buff brand multi function wraps that my paramour got me. They have UV protection, provide a BLISSFUL amount of compression, have No Seams, and can be dunked in water.

They're the neck tube things found here :…
I have several of these "Kool ties" filled with tiny bead things that activate upon contact with water. It's how I survived last summer, including an outdoor wedding.

Reusable. Kinda drippy. No electricity required.…
I think I've talked before about how much I love the fan my GF got me because I was freezing my entire house one winter with my hot flashes.

It is QUIET. It has a remote. I usually use the lowest setting because it's EFFECTIVE.

Requires power.…
This may be Dysautonomia specific, but part of why I'm heat intolerant is that my body doesn't have great circulation and I get swelling and a load of secondary problems.

These are my current favorite compression shorts, they go up to a generous 2XL…
Similarly, my favorite compression socks come in fun colors and help get oxygen to my brain.

Note that they're only 15-20 mmhg of compression but that means I can get them ON with minimal injury.…
On to electrolytes. We lose them in the heat. Gatorade is an option that is unfortunately high in sugar. YMMV

If you can tolerate sugar substitutes, nuun tablets are great. I carry them in my bag. Add to water, instant electrolyte drink…
Again this is Dysautonomia specific, because most people aren't on high salt diets.

My neuro recommended Vitassium electrolyte saltsticks and I've noticed an improvement in lightheadedness. YMMV
I'm currently operating my phone via battery back up. You know the little USB things you can charge and use in emergencies or while playing PoGo? That.

Useful especially if you have adaptive software on your phone.

I have a stash of non-perishable snack items that are safe for me to eat that I got in bulk.

It's really helpful both for times when the power is out and days when I'm too sick to actually prepare food.

I have a little rolly drawer cart with like, granola bars etc.
I wish there were not so many systemic barriers to "stockpiling meds", because if I was emperor of the universe everyone who needed meds would always be able to have a backup supply in case of natural disasters etc.

But if you take OTCs this is easier to do maybe.
A thing I'm planning on doing is going to the dollar store and stocking up on those glo stick necklaces

So if the power is out at night, I can put them around my doorknobs and not fall on the way to the bathroom
Obviously there's also stuff like solar powered flashlights. These are harder to afford when you're already paying #CripTax

I know some US states offer no-tax weekends for hurricane preparedness

For example Virginia's is coming up Aug 3-5…
Also a lot of outdoor/camping type stores have summer sales, and they also stock a lot of moisture-wicking sunwear "for hiking" or like, for existing in your disabled body

It's unfortunately hard to find plus sizes but accessories also work
Also as any historical fiber nerd will tell you, nothing quite beats loosely fitted linen clothing in summer

I have one thrift store lands end linen skirt that is my "have to be outside in summer" go to.
If you're going out and need sunscreen but have Bad Reactions To Chemicals, I have heard good things about Goddess Garden Sunscreen.

I have yet to test my own mini tube because I have been avoiding the day star.

Also comes in kid version…
If perversely you need electricity free heating pads for chronic pain, I've had good luck with Thermacare. The off label ones are terrible tbh.

I cut the adhesive off and stick them in my compression shorts.…
If you appreciate this thread, consider donating to RAICES or if you really feel like it you can get me something from my wish list…
Oh huh I guess since a lot of these "surviving power outages and heat" tips are Dysautonomia specific I should tag that community in

#Dysautonomia #POTS
PS if linen clothing is too expensive, I've also gotten recs for getting a rectangle of 100% linen fabric and placing it over your pillow or (if crafty) make your own linen pillowcase

It's on my to do list
A thing that's also on my to do list is to print out a paper copy of my med list and medical info so if I can't access my phone for some reason I can still communicate that Info
I'm still looking for some kind of solar or rechargeable battery powered fan that works better than the dinky $1 hand held ones.

If anyone has recs please let me know
Rayon is cool and more affordable than linen if the texture works for you

This is an amazing idea for light during blackouts

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More from @UntoNuggan

Jul 28, 2018
I mean if exams are in blue books and hand written, and people taking notes on laptops and other accessible technology have trouble writing by hand, then this is ZERO SURPRISE but I bet @Lollardfish is right it's time for able academics to yell about laptop bans
"Oh but students who have trouble writing by hand can get accommodations via disability services--"

Did you know that accommodations require a doctor's note

And not everyone can afford a doctor

Also some professors are actively hostile to disabled students
I had this one professor who had an "absolutely no laptops" rule and i presented my handy note from disability services

But it was a tiny seminar

I was the only one using a laptop

My classmates asked questions about why I was exempt

It was awkward af

Laptop bans are bad
Read 24 tweets
Jul 23, 2018
Getting really tired of this thing where a marginalized person says "this will harm my community" and people say "you're exaggerating that hasn't happened"

then like a week later the thing happens. The same doubters are all WHO COULD HAVE PREDICTED THIS CALAMITY

The good thing is once you spot the pattern it's easier not to become one of those people WHO COULDN'T HAVE PREDICTED THIS CALAMITY because they didn't listen to / believe marginalized people.
It's really easy to personally break this cycle. Ready?

1. If a marginalized person says a thing will harm their community, believe them.

2. Signal boost and see if anyone suggests ways to help

Yes it is that simple
Read 11 tweets
Jul 18, 2018
Since it was apparently news to a lot of people that straws are used for accessibility (DESIGNED FOR IT, even)

Here is a partial list of common kitchen items that can help disabled people cook (that we self pay for)

Kitchen thermometers : useful for colorblind people who can't discern the color of meat to test doneness

Also for d/Deaf people who want to test the doneness of bread but can't tap it to check if it "sounds hollow"
Waffle makers : because flipping pancakes requires a lot of manual dexterity and standing over the stove

These can be an access tool for those with back problems, chronic pain, coordination issues...
Read 27 tweets
Jul 13, 2018
I need environmentalists to hear that when they say "some sacrifice is necessary" to save the planet

& they're talking about *tools disabled people use to drink*

What I hear is "it's okay if you dehydrate if it's for the greater good"

I hear eugenics. 🙃

If you ASK disabled people, we could maybe work together on lifehacks to save the planet that don't limit our access to hydration.

Read 13 tweets
Jul 10, 2018
[Food, dietary restrictions]

Working on a mind map of my #MCAS triggers

This is part of the fermented/Aged Food branch. One intolerance has a cascade effect on other foods.
[food, dietary restrictions]

This mind map thing is really helping me process some feels and I think also it's less "here's my huge list of food intolerances" more "a few categories that have many sub categories"

Which is helping ease my internalized ableism tbh
[Food, dietary restrictions]

I know there's a lot of overlap with mast cell triggers, so in case this helps anyone here's my current mind map of #MCAS triggers

Help with captioning is appreciated.
Read 12 tweets
Jul 5, 2018
I don't want to yell at people when they offer alternatives to plastic straws, because i know the impulse is good.

but I need people to know that "what about ____ straws?" has joined "have you tried yoga?" in terms of emotional labor and irritation.

It feels like maybe people think disabled people did not research or discuss alternatives to plastic straws before engaging in a protracted, exhausting campaign for "opt in for plastic straws" instead of a straw ban.

(We have a chart.)
Read 19 tweets

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