I Live With a Chronic Illness and Smart Technology Helps Me Manage My Life.
The most difficult transition of my adult life was accepting that chronic illness had changed me dramatically, and I had heard others with the disease express similar feelings. And there are many of us: About 129 million Americans suffer from chronic diseases, and 42% of Americans have more than one disease.
Chronic illnesses don’t usually happen overnight, and so your ability to do everything that used to be the essence of your life also gradually disappears. Every chronic illness is different, and not all lead to major life changes, but if you are one of the growing number of people suffering from conditions such as chronic fatigue syndrome or POTS (postural orthostatic tachycardia syndrome), you must learn to adapt to how There is little you can do on your own, without outside help.
Luckily, if I can use that word here, my own chronic illness developed at a time when we have access to smart home technology, and I have been able to use it to do what I can to remain as independent as possible. Here are all the technologies I use in my daily life that help me cope with my illness and remain a self-sufficient badass (who has to take a nap after taking out the trash).
Technology can give you more spoons
People with chronic illnesses sometimes refer to what is called the “spoon theory.” The idea is that a person starts a new day with only a certain number of spoons, and everything you do during the day takes up a spoon. If you have a chronic illness, you start out with fewer spoons than healthy people, so every day you have to make important decisions about how you spend those spoons.
Sometimes going to the grocery store is the only thing you can do in a day because it takes too many spoons and you get tired. Relatively simple things can be endlessly difficult for you, and this is complicated by the fact that you also have to spend a lot of time explaining to people what is difficult for you and why.
This is why smart technology can be so useful: if you rely on a machine to do something without you having to do it, that’s one more spoon you can save for the day.
Robots are my cleaning team
I loved automation even before I got sick, but it has since gone from being an easy help to being a mission-critical tool. Basic tasks like cleaning have become unbearably burdensome, so tools like robot vacuums that do most of the work for me have become critical.
As promising as robotic cleaners sound, they won’t help if I have to go down to the ground to rescue them from under the couch or lift them frequently (they’re heavy) to clean the rollers, both of which are difficult tasks. should I do it now. I test a ton of robots in my work for Lifehacker, but for these reasons I rely on my Roborock S8 MaxV Ultra . I can stand in one place and the robot will come to me if I need to clean somewhere, and I can use the remote in the app to rescue it from under the sofa.
For anything a robot can’t handle, I rely on my Samsung Bespoke Jet AI vacuum cleaner because the independent dock means it’s always in the place I use it (the living room) and not in the closet. It’s much lighter than any other stick I’ve tried and doesn’t get hampered by dirt on the floor. It unloads itself into the dock, so that leaves me with one less job to do. I use a Segway robotic lawnmower on my small back lawn because the idea of carrying a lawnmower is exhausting.
While I have these robots scheduled to keep them running all night when I can’t trip on them, I also have specific zones set up for problem spots like in front of the doggy door, and automation set up in Google Home so I can ask Google to send my robots to wipe down the area between my dog door and the front door where dirty paw prints tend to get.
Environmental control is critical
Many chronic diseases impair your body’s ability to regulate temperature, so your life is filled with devices that help keep you warm or cool. But most of them still require you to get up and set them up, turn them on, or adjust them. Smart devices will do all this hard work for you.
First, I created an automatic adjustment layer to keep my rooms at a comfortable temperature. I did this using a combination of smart temperature sensors (I find Aqara and Switchbot to be the most reliable), air conditioners and heaters. I have Midea U-shape air conditioners in my home, and as long as I keep the filters clean, they cool reliably and stay plugged in. For heaters, I use eHeat’s Smart Envi , which heats the room efficiently without increasing my energy bills. All automation for these tasks is configured through Google Home, which can integrate devices from 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 that gap. My Dyson Hot+Cool is surprisingly effective as both a fan and a heater, and while it’s not technically “smart”, the remote control will allow you to move it without getting up. I have Dreo fans in every room of my house because of their ability to cool me down without making me feel like I’m in a wind tunnel (their “natural setting” is like a gentle breeze). I especially love my Dreo standing fan , which I can use my phone to adjust not only left and right, but also up and down.
The real game changer was my BedJet . Nighttime climate control involved finding the right sheets and the right combination of fan, air conditioner and heater, and always required a lot of effort. My BedJet blows hot or cold air into a pocket sheet that covers me, instantly cooling or warming me up—and I mean instantly. I don’t feel dried out because technically there’s no air being blown on me; I lie under a cloud of air that remains trapped in the top sheet. Even though BedJet is relatively inexpensive compared to all the other technology in my home, it’s incredible how much BedJet has improved my sleep.
Monitoring air quality is also important as I am now more sensitive to mold and allergens, so smart air purifiers dot the landscape of my home and turn on based on the air quality inside. So far I’ve been most impressed with my Jaspr because of the sheer volume of air it purifies for its size, and my Coway Airmega IconS , which looks right at home in my living room and is pretty quiet.
Like the rest of my home, I set up automation in Google Home so I could say, “Google, hot,” or “Google, cold,” and the right smart devices would respond.
Sleep better thanks to technology
Over the course of a year, I went from someone who slept a few hours a day to someone who often slept 16 hours a day. You spend a lot of time in bed, and I quickly realized that my 16-year-old bed was no longer suitable. I went and checked out a bunch of beds at bed stores and eventually settled on the Saatva HD , which was by far the most comfortable, definitely more comfortable than those mail order mattresses that come rolled up. A good bed has changed my sleep for the better. I know this because I now track my sleep using the Oura ring . I was surprised how useful the ring was for monitoring my activity, but what it does best is help me track my sleep, including how productive it was.
I plan to switch to smart blackout curtains from Rolli soon. I have a smart humidifier and am trying different sheets to see if that helps. There’s a reason Aura ‘s incredibly fashionable sleep mask has become part of my daily routine. It’s incredibly soft and feels like you’re wearing a pillow over it. It has Bluetooth and lighting patterns, and you can customize relaxation routines to play on it. I laughed when I opened it, but I’ll tell you what: it’s incredibly effective.
Smart kitchen tools bring the joy back to cooking
For someone who had always made everything from scratch, including growing vegetables, being too tired to eat, let alone 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 . Brava is great because I can put what I want to cook on the menu, add food, and go. It has a temperature sensor and camera so I can watch it cook from the comfort of my couch as it controls everything from time to temperature. I can add a protein like salmon or chicken and know I won’t spoil it, and it’s helped me stop relying on frozen food.
Briskit works similarly. This is a fully functioning grill and smoker. You look up a recipe on your phone, send it to the grill, start it remotely, and then add food as directed, insert the temperature probe, and leave it alone. The phone will alert you if you need to do something, such as turn a dish, and will also turn off the grill when the food is ready.
When I write about these devices, people often make fun of their smart features, wondering if they’re really necessary. For many people, this probably isn’t the case, but for me, they mean the difference between another dish of microwaved edamame and the real thing I made for myself.
A variety of smart thermometers also help with cooking in my regular oven. I like the Combustion feature for its very accurate temperature readings and also because it allows you to predict when your food will be ready. To avoid having to stand over the stove and stir, I use a StirMate , an electric stirrer. I also have a pan/tilt Blink camera in my kitchen so I can watch the stove while I’m sitting.
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 the alarm for a few minutes so I don’t forget to check it.
Cameras aren’t just for security
There are cameras installed outside my house that used to give me a great view of the wildlife around me. They now allow me to keep an eye on my garden, see what the hell my dog and chickens are doing in the backyard, communicate with whoever is working in my yard, and most importantly, without having to get up to answer the door. .
My video intercom helps me make sure I don’t miss a package (I can’t get to the door that fast), know when there’s something waiting at my doorstep, and even allows me to communicate with people who come to my door, all without any hassle. effort. I really have to get up. I’ve tried several doorbells and cameras, but I still love my Ring Doorbell Pro and pan, tilt, and zoom cameras like the Eufy Solocam line. In particular, I love that Ring allows me to pre-record responses, so if I take a nap in the middle of the day, I can put the phone on Do Not Disturb mode without worrying about missing a delivery.
Lighting can make a huge difference
When I ask other people with chronic illnesses what technology they use, the most common answer 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 another reason I hadn’t thought of: smart lights are always LED, and they can usually be set to a specific color. or white. If you have problems with stimulation, being able to change this color may be helpful. I will never get rid of my Nanoleaf smart lights. These lights come in different shapes and can be customized to different color schemes and movement patterns. It sounds chaotic, but it’s actually the opposite. I find them incredibly calming, so in my bedroom I turn off the overhead light and turn on the Nanoleafs (set to the Aurora Borealis pattern) and it creates a calm, gentle lighting pattern in the room.
The best automation I have in my Google home is “turn off all the lights” which I use every day. He can single-handedly turn off every light in the house with one command. In the morning I turn it over with “turn on the light.”
Caring for pets will become easier with automation
The scariest part of the illness was figuring out how I would continue to care for my dog and chickens given that I was having a hard time taking care of myself. Pets can be an important part of a person’s mental and emotional health, and can also perform real physical tasks for them, so anything that will help you keep them close makes sense.
I had to stop feeding my dog her normal diet of frozen raw food for a while because it was too overwhelming. I was able to switch back when I found a refrigerated Petlibro feeder that will keep her food cold for three days (technically it’s a cat feeder, but Blueberry doesn’t seem to notice). I will continue to set Google Home alerts every night to check her water bowl until someone invents a smart bowl with notifications.
I’ve previously written about all the smart tools I use with my chickens , but my friends with cats are doing something similar: robotic litter trays that clean themselves, and feeders with RFID and cameras so you know when your cats have eaten.
Apps and wearable devices can provide valuable information
I don’t need to tell you that American healthcare is broken, but you won’t truly understand how bad things are until you’re actually sick and have to navigate the system. Calling it tedious and frustrating is an understatement. In many ways, independent apps and tools have become more useful than anything my providers can offer, and by far the best app for those managing chronic conditions is Guava Health .
It brings together all the data from my wearables, like the Oura ring, as well as all the information about my doctor visits, their notes, my medications, and various tests. It takes everything from MyChart, a common app that most healthcare providers use but is difficult to navigate, and makes it readable. I can even see records from doctors that aren’t in MyChart. You can track your menstrual cycles, pain symptoms, and medications. To make this easier, there are Guava tags that work like QR codes and can represent anything you want: “Took a pill,” “Had a headache,” “Right arm pain,” or “Eat gluten.” »
Quite quickly, I realized that Visible, a wearable device for people with POTS and similar conditions, was something to use. It’s an armband with a small disc that you charge every night. It’s supposed to help you, by monitoring your vital signs, determine when you’re about to overheat or become overtired. It may seem like a small thing, but overexertion in someone with one of these conditions can snowball within days, and if you can spot it early, it’s very important.
I was skeptical, but less so after trying the group for a few months. I don’t take what the group tells me as gospel and go straight to bed, but it serves as useful insight into how I allocate my spoons on a given day. Visible tracks you for a week and then creates the energy budget you’re likely to have throughout the day and shows how you use it over a 24-hour period. When you approach a dangerous point, it warns you. I found this very helpful for self-monitoring.
Voice assistants – MVP
I loved my Google Assistant before I got sick, but now it’s the most important relationship in my life. It’s not just that I can get help turning a light on and off or turning off a TV I forgot about. My assistant does the math for me, takes prescriptions, tells me when the store opens and phone number, and even tracks my packages.
Every day I send myself a hundred reminders in Google Assistant, from “take a pill” to “feed the chickens” to “turn off the water.” I set alarms and get information about the temperature in the room. I might turn on the air conditioner or heater before entering a room, or ask if the vacuum cleaner is running. I can tell the dryer to run another cycle. Google Assistant can play a ton of different white noises or nature sounds for me, play music on my command, or even read the news to me. Each of these things saves me a little work, and it all adds up in a day. This is another spoon.
Assistive technologies are too expensive for the people who benefit most from them.
I’m absurdly lucky that I test smart technology as part of my job, as it often means I get access to all these devices without paying for them. While smart technology can be fantastic for eliminating labor costs (a benefit we all deserve), I can’t lose sight of the fact that while they are accessibility devices at best, they are also terribly expensive. Given that many people with chronic illnesses or disabilities are unable to work as much as able-bodied people, the devices that will help them most remain largely outside their budget. And that’s a real shame.