Rage_atx Recommends
Hi! I'm Rachel, and I am living with chronic illnesses. Yes, multiple. No, we aren't sure how many yet - we're still digging.
Here's what we know so far: dysautonomia/POTS, epilepsy, Polymyalgia Rheumatica, chronic migraine, insomnia. Thinking there may be more autoimmune in the mix?
I wanted to share a list of my life hacks that make things easier, more comfy, or more fun (I have a lot of time that I have to be still). I'm sensitive af to pressure and sound, and pretty much anything will make me incapable of sleep.
The links below are affiliate links to Amazon, but I personally use all of these things to get by every single week. Ask me on insta/threads if I've tried something and I'm happy to share my opinion.
If you buy them on the affiliate link, thanks! Being chronically sick is expensive AF and you're helping me fund a small piece of my medical bills. If you went elsewhere, also cool - you do you. I just want to help out where I can and share what's working for me.
Sleeping Comfortable
Sutera Pillow
My absolute go-to for neck pain in bed. It goes on all road trips with me.
Legit must have even though it looks weird.
BedJet 3
This cools/heats the bed using air. I don't love it blowing over my feet, so I'd suggest their sheet so that it cools through the sheet. This works best if you want to cool yourself from the blanket/top side. This lives at my parents' house.
Chili Pad
I'm convinced this saved my life. I sleep hot, this pipes cold water under me and I don't feel the piping (use distilled water!). This lives on my bed and I cry in hotel beds now. My HRV went up, and sleep feels more restful. It's SO comfy getting in a cold bed. Know other spoonies who can vouch for this.
Small Battery Powered Fan
This gets a lot of use when I travel. Holds a charge, USB C, 3 speeds, packs tiny, and is my bestest buddy when I'm warm in a hotel bed and I can't get comfy.
Everything is Noisy
Bose Noise Cancelling Headphones
Since I live in these (I even nap in them), I prefer over ear hoping to save my hearing. ANC is excellent and the Ultras are the most plush and don't squeeze my head and cause a migraine.
'Lectrofan White Noise Machine
I used to rely on a different brand, but the motor kept burning out on the newer ones. Reddit said try 'Lectrofan and I can always hear loops on recordings - I hear no loop on the white noise recordings. Gets very loud if needed. Small enough it could travel.
Ozlo Sleepbuds
Previously Bose Sleepbuds, engineers bought the patent and made these even better. Noise masking, not cancelling, these have gone with me all over the world. Comfortable for side sleepers! Have yet to want to yeet these out of my ears. Layer these with in room white noise makers (1 by you, 1 by door) to stop the sound of people in the hallway and sleep in.
'Lectrofan Travel White Noise Machine
So you could travel with the full size 'Lectrofan, but I've been seriously impressed with the super tiny travel version. I believe it has an onboard battery (haven't needed it) and I don't hear a loop on white noise tracks. It's palm sized. I love it and pack 2.
White Noise Maker Disclaimer
These can do more than white noise (nature, for example) but those keep me up so I can't really speak to those options.
Loop Switch 2 Earplugs
When I want to turn down the noise but not turn it off. I find that I can isolate the voices at my table and tune out the rest, which is a problem for me. Also Loop Engage works well for that.
Loop Dream Earplugs
These are comfy enough to sleep in, but I prefer my Ozlos. I do like that they turn things way down so I'll wear them if I don't want my Bose but I want to think.
Power for Doomscrolling
Anker MagSafe Battery
Magnetic power (assuming your phone can do that!) but I extra like that I can prop the phone up if I'm watching something. Very seamless to use.
Handiest Power Pack I've Found
Ignore the pic - it's a US plug! You can plug this directly into the wall to charge it, it comes with a case, and micro USB, USB C, and lightning cables are built into the side.
Anker Power Strip
2 plugs, 2 USB, 2 USB C and will keep you from being tethered to a wall in close proximity. I especially love this for travel - the flat plug easily fits behind a nightstand in a hotel. And abroad sometimes there's only one plug and it's not in the best place and we have lots of things to charge.
Cure Boredom (mostly)
Stream & Game on an iPad
Especially with all my time in the hospital, I'd be lost without my tablet. I have an iPad from before I swapped teams to Android and it works great.
Read ALL the Books
My Kindle Paperwhite goes to all my appointments. I find this one easiest on my eyes (truetone screens are much easier on me with migraines). Pair this with a library card for free books to read. We love the library at my house.
Learn to Knit
A scarf is the easiest thing to learn to knit, and I do recommend learning on straight needles. This little kit has everything you need to make your first scarf. If you love it, I have some recommendations on where to start below.
Interchangable Circular Needle Set
For all of my knitting, I use circular needles. And with these interchangeable I can set myself up for success no matter the project. This is my recommendation for your first set of circulars. Comes in some fun colors too.
Stream & Game on a Pixel Tablet
With my iPad getting old, I invested in a Pixel tablet when one was on sale. I'm on a Pixel phone, so it made sense. It works great and has lots of extra intuitive things and a neat dock if you want one.
Learn to Crochet
These Wooble kits (lots of cute animals to choose from! even a jar of peanut butter!) are easy to follow and have videos walking you through every single step of making arigumi.
Baggu Zip Bags
These are my favorite for keeping my project corralled. I have cats so I don't like leaving yarn out to chew on, stitch markers, etc. They come in a whole bunch of cute patterns and will be awesome for storing your WIP (work in progress).
Malabrigo Yarn
So if you decide to go down the knitting rabbit hole, eventually you're going to want nicer than acrylic yarn (probably). You'll learn the sizes of yarn you like, but a great starting point is sport or DK. This DK Malabrigo is soft, gorgeous, and always knits up beautfully no matter the colorway. If you ever make something big, make sure you match the lot numbers so you don't have yarn that doesn't match.
Some Info on Knitting
In case you want to dive deeper into knitting, check Ravelry.com for patterns. Watch Youtube tutorials for stitches you don't know. There are a lot of amazing tutorial channels where I learned. Your yarn will have a sleeve, and on that will be the size of the needle that is recommended. Find your local yarn shop! Some even have masked shopping times for people who prefer that. They will help you troubleshoot and have sample knitted items out. Many offer classes if that's not too much for you. Also getting to see the yarn thickness and texture, and getting to touch it to see if it's soft or itchy to you is so nice to do in person. Highly recommend. It's a chill, quiet outing and everything is pretty. There's also a ton of notions (all the stuff that's not yarn/needles like stoppers, scissors, measuring tapes, stitch markers, etc). So much cute stuff out there. If you're in Austin, I recommend Gauge.
Emotional Support Water Bottle
Larq PurVis Water Bottle
Yes, the PurVis 2 is probably overkill. Honestly I think that water tastes best coming out of the straw filter. You could go down a step to the simpler Larq and get one that just cleans itself. It really does stay clean - I usually wash it a couple times a month by hand. ONLY put water in here (POTSies I'm looking at you). Tracking is nice but not necessary for me imo. I have the 34 oz.
30 oz Yeti
Because I'm also drinking a lot of salt because of my POTS, I keep a Yeti on hand too. No filters for me to ruin with my electrolytes and it keeps my drink cold all day if I need it to. 30 oz is enough I can use 2 of most salt mixes, or one of the Triorals (link below). Best part: completely dishwasher safe.
Stuff I Find Helpful with POTS/Long Covid
Collapsable Stool
Telescoping and folds flat in no time, fits in my backpack. Comes in fun colors and ones that won't stand out. Has a shoulder strap. Goes a ton of places with me because with POTS I am often looking for a seat...and quickly. Many of my POTSie friends have these (mine is blue!)
Trioral Rehydration Salts
Almost 1700mg per packet, and sugar (which I've learned helps you absorb the salt). It's fine on its own but I recommend adding flavor. Of all the salt mixes, I feel best on this one by a mile. I've shared with friends and gotten similar feedback. I prefer this in about 30 oz of water.
Quest Cheese Crackers
Kinda similar to Cheese Its, but I like that this has a bit more protein. It never seems to upset my stomach so I always have a bag in my purse. If I haven't been hungry enough to eat, I'm nauseated because I'm hungry, or I need a snack - this is my go-to.
Ta-Da Chair
Not the coolest name or coolest looking cane (stickers can help!) but this flips out to a little stool in under 3 seconds. Slight learning curve to putting the stool away. I don't always take this with me but it's great for things like concerts that might have a bathroom line. I haven't had issues taking it in as an assistance device anywhere.
Crystal Lite Flavoring
Something like a couple squeezes of this Crystal Lite (the strawberry lemonade is yummy) will cover up the rest of the taste of the Trioral and make it really tasty. We even found Skittles brand flavoring (it really does taste like Skittles). No extra sugar. Lots of flavor options.
IV Hoodie
Part of hypovolemic POTS is that sometimes my blood volume/blood pressure get low and I need an IV. Plus I'm undergoing IVIG right now. Even my nurses rave about how great this hoodie is. I slide my wrist out while they work, and zip it up to stay warm during my infusion. A must have for anyone getting frequent IVs.
Folding Shower Stool
Should I probably get a more medical one? Yes. Am I mentally there yet? No. This folding one is out of sight quickly but lets me sit down to wash my hair/shower which my POTS appreciates.
Keeping Pills Organized
Small Pill Organizer
One of these lives in my purse with everything I might need to bail myself out of pretty much any situation. They come in an 8 pack, so I also have one in my work bag, backpack, hospital bag, etc. Gamechanger.
Larger Pill Organizer
This one is the largest of the three and if I'm traveling abroad this is how I bring my refills for my weekly pill case. I actually have two in case the trip is really long. Also I've been known to pack them in different spots and keep them in the room safe because I know I'm dead in the water without my meds.
Pill Thing
Despite its boring name, this little thing has sped up my weekly organizer refills! I dump my entire month's worth in this waterproof, lightproof box with three snaps and a serious rubber gasket. Unlike a craft/tackle box, the bottoms of these 20 spots are curved, making it really easy to get pills out.
Medium Pill Organizer
This doesn't really look bigger, but it really is. I personally toss the labels and use my own label maker. This is a good backup for refilling my weekly pills on a shortish trip.
Dosey Pill Organizer
This one I like for daily vitamins. It's cute, thin, comes in pretty colors and I can toss my vitamins and supplements inside. Easy to pack, too.
Ikigai AM/PM Weekly Pill Organizer
These are indestructible and the AM/PM ones are magnetic! I got the Vitamin 2.0 size. You can customize the colors you want (I did yellow for AM and purple with blue spltter for PM). They don't accidentally slide open so I chuck them in my bag and keep moving. I refill on Sundays.
DYMO Label Maker
I'm on a LOT of meds and supplements and vitamins just to stay upright right now. I can tell the difference between my meds on sight, but I don't expect a doctor or my husband to be able to sort through them quickly. Every single pill organizer (except Dosey and Ikigai) have labeled compartments for no mix up including medication name and dosage amount. The Dosey and Ikigai are just organized by day/time.
Tracking, Masking, and Home First Aid
Garmin Venu 4
I'm currently on the 3S but will be upgrading to the 4. Remember that these are built for healthy people, but I use it for body battery which I find to be a pretty reliable indicator of how I'm doing. I also like HRV tracking. And I do track all my workouts on this (even if they look a bit different these days). There's also high/low HR alerting. My body battery usually gets to 20-30%, 60% is a phenomenal day - but using this metric I was able to see when I started steroids, when I got my bed cooler, etc. Solid investment in tracking your own data.
N95 Mask - 3M Aura
Being immunocompromised, I still mask if I'm in a large group or on a plane. This N95, for me, is the gold standard - especially for long periods of time (I've run clinics for 14 hours in one of these and it's comfortable). Padded nose bridge, easy to get a seal, comfortable to wear. I like the 9205 over the 9210 - basically the same thing but I find the blue elastic bands more comfy than the white elastic bands.
O2 Monitor
Doctor recommended so I can monitor my O2 when I have fever/symptoms easily. Also a great way to do an at home poor man tilt table test for POTS since it's constantly reporting data. I even pack this when I travel. Comes with a case if you want to keep it covered.
First Aid Kit
You can buy a first aid kit that is pre built out, but over the years we've cobbled together the stuff we actually use that we care about (we have a separate kit for hiking with things like a tourniquet that we probably don't need at home). This one made me laugh and it fit a large amount of stuff! We put some basics like our thermometer, some chapstick, tweezers and clippers in the small bag and tossed it in the larger one.
Covid/Flu Test
We are still testing if we have symptoms because most of my issues stem from Covid infections in 2020 and 2022. Despite my best attempts to avoid it, I had it once before we knew what it was (taste/smell dead giveaway now) and once from a work convention (have to take your mask off to eat). Now it's a courtesy not to share those germs with others, since I don't want anyone to be in my shoes if we can avoid it.
Kardia 2 Lead EKG
They have another one that is a 6 lead I think, but my doc recommended this one because it fits in my wallet so I always have it. If I have palpatations or crazy tachycardia I can capture it using my phone app and send it over for him to take a look. You can also pay a Kardia cardiologist to look at your data if you need that option. Can't rule out a heart attack (no home device I know can) but can rule out a bunch of other stuff.
KN95 Mask - Powecom
This is the most effective KN95 I've been able to find. The nose piece will feel pinchy - I flatten mine out before I put it on and then fit it to my face and I don't have any more issues. This is my daily driver mask if somewhere is crowded or for a doctor appointment.
Vicks Thermometer
In my opinion - fastest read, accurate, and love the color coding so I can quickly make decisions even with a high fever. We have several of these since I carry one, one in the first aid kit, etc. They tend to float around the house.
On the Go First Aid Kit
This isn't enough for hiking or a bad injury but it's perfect for the everyday stuff! Comes in cute patters, fits in the palm of your hand, and easy to toss in a bag. We just refill things as we use them up.
Welly Bandages
These are by far our favorite bandages. They come in ridiculous patterns and colors. Our favorites are these glow in the dark ones and their tye dye set. Regardless, you can't go wrong - they stick well, they are fun. If you're going to wear a bandage, we are pro make them fun (nursing staff agrees, I always bring in ridiculous ones for
Nivea Soft Moisturizing Cream
This didn't really fit anywhere so I'm putting it here. I am SO dry I'm practically scaly, and this stuff smells clean and soaks in quickly. It also has some staying power on me which is rare. My husband likes the scent for himself too, so it's not too fragrant.