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The most difficult transition of my adult life was accepting that it had been dramatically altered by a chronic illness, and I've heard others so afflicted express similar sentiments. And there are a lot of us: Some 129 million Americans have a chronic illness, and 42% of Americans have more than one.
Chronic illnesses generally don't happen overnight, and so your ability to do all the things that used to make up the substance of your life also disappear slowly. Every chronic illness is different, and not all result in major life changes, but if you’re one of the growing number of people afflicted by conditions like chronic fatigue syndrome or POTS (Postural Orthostatic Tachycardia Syndrome), you must learn to adapt to how little you can do on your own, unassisted.
Luckily, if that word can be used here, my own chronic illness developed at a time when we have access to smart home technology, and I have been able to harness it to do what I can to remain as independent as possible. Here is all the technology I use in my daily life that helps me cope with my illness and remain a self-sufficient badass (who has to nap after taking out the trash).
Technology can give you more "spoons"
Folks with chronic illness sometimes reference something called the “spoon theory.” The idea is that a person starts a new day with only so many spoons, and everything you do during the day takes a spoon. If you have chronic illness, you start with fewer spoons that healthy individuals, so each day, you have to make critical decisions about what you’ll spend those spoons on.
Going to the grocery store is sometimes the only thing you can do in a day, because it takes too many spoons, leaving you exhausted. Things that are relatively simple can be endlessly difficult for you, a circumstance complicated by the fact you also have to spend a lot of time explaining to people that things are harder for you, and why.
That’s why smart tech can be so useful: If you're relying on a machine to do something so you don't have to, that's one more spoon you get to keep for the day.
Robots are my cleaning crew
I loved automation even before I got sick, but it went from a gentle assist to a critical tool afterward. Basic activities like cleaning became unbearably cumbersome, so tools like robot vacuums, which handle a lot of the work for me, became critical.
As promising as cleaning robots sound, they don’t help if I have to get down on the ground to rescue them from under the couch, or frequently pick them up (they’re heavy) to clear the rollers, both tasks that are hard for me to do now. I test a ton of robots in my work for Lifehacker, but I rely on my Roborock S8 MaxV Ultra for those reasons. I can stand in one spot and the robot will come to me if I need to clean someplace, and I can use the remote control in the app to rescue it from under the couch.
For anything the robot can’t deal with, I have been relying on my Samsung Bespoke Jet AI stick vacuum, because the independent dock means it’s always in the spot where I use it (my living room) instead of in a closet. It’s so much lighter than any other stick I tried, and isn’t deterred by whatever grime is on my floor. It self empties into the dock, so that’s also one less thing for me to do. I use a Segway robot lawnmower on the small lawn out back because even the idea of hauling around a lawnmower is exhausting.
While I have these robots on a schedule that keeps them running overnight, when I can’t trip on them, I also have specific zones set up for problem areas, like in front of the doggie door, and automations set up in Google Home so I can ask Google to send my robots to mop the zone between my doggie door and the front door, where muddy paw prints tend to end up.
Controlling your environment is critical
Many chronic illnesses impair your body’s ability to regulate your temperature, and so your life becomes filled with devices to help keep you warmer or cooler. But most of these still require you to get up and set them up, or turn them on, or adjust them. Smart devices handle all of this heavy lifting for you.
First, I created a layer of automatic adjustment so that my rooms remain at a comfortable temperature. I did this using a combination of smart temperature sensors (I think Aqara and Switchbot are the most reliable), air conditioners, and heaters. I have Midea U-Shaped A/Cs throughout my house, and as long as I keep the filters clean, they remain reliably good at cooling and staying connected to the network. For heaters, I use the Smart Envi by eHeat, which effectively heats an area without overloading my electric bill. All of the automations for these tasks are set up through Google Home, which can integrate devices from many different brands into routines with dependencies. Think: “If the temperature drops below X, turn on the heater.”
If that were enough, that would be great, but I also need smart fans and heaters to fill the gap. My Dyson Hot+Cool is surprisingly effective at being both a fan and a heater and while its not technically “smart,” the remote will let you reposition it without getting up. Dreo fans are in every single room in my home because of their ability to cool me off without making me feel like I'm in a wind tunnel (their “natural setting” is like a gentle breeze). I particularly like my Dreo standing fan, which I can adjust using my phone, not only left and right, but also up and down.
The real game changer was my BedJet. Overnight climate control involved finding the right sheets, and the right mix of fan, A/C, and heater, and always required a ton of tinkering. My BedJet blows hot or cold air into a pocket sheet that covers me, instantly cooling or warming me—and I do mean instantly. I don't feel dried out, because the air isn’t technically being blown at me; I am laying underneath a cloud of air that remains trapped in the top sheet. For how relatively inexpensive it is compared to all the other technology in my house, it's wild how much the BedJet has improved my sleep.
Controlling the quality of the air is important too, since I’m now more sensitive to mold and allergens, so smart air purifiers dot the landscape of my home and turn on based on the interior air quality. So far, I have been most impressed by my Jaspr, because of the sheer volume of air it cleans for its size, and my Coway Airmega IconS, which looks at home in my living room and is pretty quiet.
As with the rest of my home, I’ve set up automations in Google Home so I can say, “Google it’s hot” or “Google, it’s cold” and the right smart devices will react.
Better sleeping through technology
In one year, I went from someone who slept a few hours a night to someone who often sleeps 16 hours a day. That’s a lot of time in bed, and I quickly realized my 16 year old bed wasn’t cutting it anymore. I went and laid in a bunch of beds in bed stores, and ended up with a Saatva HD, which was far and away the most supportive, certainly more supportive than those mail-order mattresses that come rolled up. Having a good bed has changed my sleep for the better. I know because I now track my sleep using my Oura ring. I was surprised how helpful the ring turned out to be for monitoring my activity, but it's best at helping me track my sleep, including how productive that sleep was.
I plan to upgrade to smart blackout shades from Rolli soon. I have a smart humidifier, and am trying different sheets to see if any help. Not for nothing, but the incredibly fancy sleeping mask by Aura has become part of my routine. It is incredibly soft, so it feels like wearing a pillow. It has Bluetooth and light patterns, and you can set up relaxation routines that will play on it. I laughed when I opened it, but I’ll tell you what—it’s incredibly effective.
Smart kitchen tools bring joy back into cooking
For someone who always made everything from scratch, including growing the vegetables, being too tired to eat, let alone to find the energy to cook, was a big life change. Two kitchen appliances became my crutches: the Brava smart oven, and the Briskit Origin Smart Grill. The Brava is great because I am able to punch in what I want to cook from the menu, and add the food, and walk away. It has a temperature probe and a camera, so I can watch things cook from the couch, as it handles everything, from the time to the temperature. I can toss in a protein like salmon or chicken and know I won’t ruin it, and this helped me to stop relying on frozen food.
The Briskit works similarly. It's a fully functioning grill and smoker. You look up a recipe on your phone, send it to the grill, start it remotely, and then put your food in when instructed, stick in a temperature probe, and leave it alone. The phone will alert you if you need to do something like rotate the food, and also turn off the grill when your food is ready.
When I write about these devices, people often make fun of the smart features, wondering if they’re actually necessary. For many people, they’re likely not, but for me, they mean the difference between another meal of microwaved edamame and an actual meal that I cooked for myself.
A variety of smart thermometers also help make cooking in my regular oven possible. I love the Combustion for highly accurate temperature readings, but also because it will predict when the food will be done. To eliminate the labor of standing over the stove stirring, I use a StirMate, an electric pot stirrer. I also have a Blink pan and tilt camera in my kitchen, so I can watch the stove while I’m sitting down.
I also have Google Nest Mini speakers throughout the house. This is how I access Google Assistant. As soon as I put something on the stove, I ask Google to set an alarm for a few minutes, so I remember to check on it.
Cameras aren’t just for security
The exterior of my home is wired with cameras that used to give me a great view of the wildlife around me. Now, they allow me to keep an eye on my garden, see what the heck my dog and chickens are up to in the backyard, communicate with someone working in my yard, and most importantly, to not have to get up to answer the door.
My video doorbell helps me to not miss a package (I can’t get to the door that fast), to know when something is waiting for me on the doorstep, and even lets me interact with people who come to my door, all without having to actually get up. I’ve tried a number of doorbells and cameras, but I still love my Ring Doorbell Pro, and pan/tilt/zoom cameras like the Eufy Solocam line. In particular, I like that the Ring lets me prerecord responses so that if I’m taking a mid day nap, I can put my phone on do not disturb without worrying about missing a delivery.
Lighting can make a huge difference
When I ask other people with chronic illness what technology they use, the most common response is smart lighting. Yes, it’s helpful to not have to deal with switches and control things from your phone or voice assistant, but there was an additional reason I didn’t think of: Smart lights are always LED lights, and can usually be tuned to a specific color or white. If you are dealing with stimulation issues, being able to change that color can be helpful.
I’ll never get rid of my Nanoleaf smart lights. These lights come in various shapes and can be set to different color schemes and patterns of motion. That sounds chaotic, but it's actually the opposite. I find them incredibly calming, and so in my bedroom, I turn off the overhead lights and turn on the Nanoleafs (set to an Aurora Borealis scheme) and it paints a calm, subtle light scheme in the room.
The best automation I have in my Google home is “turn all the lights off”, which I use every day. It can singlehandedly kill every light in the house in one command. I reverse it in the morning with “turn the lights on”.
Taking care of pets is easier with automation
The most terrifying part of getting sick was figuring out how I’d continue to take care of my dog and chickens, considering I was struggling to take care of myself. Pets can be a critical part of a person's mental and emotional health, and can also perform real physical tasks for that person, so anything that helps you keep them around is worthwhile.
For a while, I had to stop feeding my dog her usual diet of frozen raw food, because it was simply too cumbersome. I was able to switch back when I found Petlibro’s refrigerated feeder, which will keep her meals cold for three days (it is technically a cat feeder, but Blueberry doesn't seem to notice). I'll keep setting Google Home alerts every other night to check her water bowl until someone invents a smart water bowl with notifications.
I’ve previously written about all the smart tools I use with my chickens, but my friends with cats do something similar: robotic litter trays that clean themselves, and feeders with RFID and cameras, so you know when your cats have eaten.
Apps and wearables can give valuable insight
I don’t need to tell you that the American healthcare is broken, but you can’t truly understand how bad things are until you get really sick and have to navigate the system. Calling doing so exhausting and frustrating is an understatement. In many ways, independent apps and tools have become more useful than anything my providers have to offer, and far and away the best app for someone managing chronic illness is Guava Health.
It aggregates all the data from my wearable devices like the Oura ring, and also aggregates all the information from my doctor visits, their notes, my medications, and various tests. It takes everything out of MyChart, the common app that most health care providers use but which is hard to navigate, and makes it readable. I am even able to see doctors' notes that don’t appear in MyChart. You can track period cycles, pain symptoms, and medications. To make this easier, there are Guava tags, which work like QR codes and can be set to mean anything you’d like: “Took a pill,” “Had a headache,” “Right arm pain,” or “Ate gluten.”
Pretty quickly, I learned that Visible, a wearable for people with POTS and conditions like it, was the thing to use. It’s an armband with a small disk that you charge nightly, and it is supposed to help you determine, by monitoring your vitals, when you are about to overheat or overdo your activity. This may seem like a small thing, but overexertion for someone with one of these illnesses can snowball for multiple days, and if you can catch it ahead of time, it's a big deal.
I was skeptical, but less so after trying the band for a few months. I don’t treat what the band tells me as gospel and immediately lay down, but it serves as useful insight into how I’m allocating my spoons on a given day. Visible tracks you for a week, and then creates a budget of energy you’re likely to have in a day and shows how you’re using it over the course of 24 hours. As you approach a danger point, it alerts you. I found it super useful for keeping tabs on myself.
Voice assistants are the MVP
I loved my Google Assistant before I got sick, but it is now the most important relationship in my life. It’s not only that I can get an assist turning lights on and off, or turn off a TV I forgot about. My assistant does math for me, grabs recipes for me, tells me when a store opens and the phone number, and even tracks my packages.
I issue a hundred reminders to myself on Google Assistant each day, from “take a pill,” to “feed the chickens,” to “turn the water off”. I set alarms and get information about the temperature in a room. I can turn on an A/C or heater before I go into that room, or ask if a vacuum worked. I can tell the dryer to run another cycle. Google assistant can play a ton of different white noise or nature sounds for me, play music at my command, or even read me the news. Each of these things eliminates a tiny bit of labor for me, and that all adds up in a day. It’s another spoon.
Assistive technology is too expensive for the people it benefits the most
I am absurdly lucky that I test smart technology as part of my job, as it often means I get access to all of these devices without paying for them. While smart tech can be fantastic for removing labor—a benefit we all deserve—I can't overlook the fact that they are, at their best, accessibility devices, yet they are frightfully expensive. Given many people with chronic illness or disability can't work as much as able-bodied people, the devices that will help them the most remain largely out of their budgets. And that's a real shame.
from LifeHacker https://ift.tt/QOUC9fv
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