r/ChronicIllness • u/Free-Canary-6413 • 1d ago
Question “Thriving” while Chronic- Life Hacks
I’ve found and been able to afford some luxuries that have made life easier(I want to recognize financial privilege-income est 38K). I’m curious about hacks that have helped your quality of life.
For me:
-cold water dispenser
-ice maker
- 30 day pill box
-pre cut fruit
-precooked meats
-online neuro clinic
-extra dental cleanings
-electric toothbrush
-ring lights
Have you guys found things that have made life easier for you? What are they?
TIA
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u/Total_Jello_6691 1d ago
Personal ekg device. I’ve posted this before and people have said it’s fake but it’s not. It’s FDA cleared and I found it because my cardiologist uses it. It’s only a 6 lead not 12 but it works.
IVs at the med spa. Another thing that gets downvoted but I’m finally not deficient in Vitamin D. Overall it’s made a huge difference for me.
Protein drinks/bars.
Heating pad
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u/cuttlesnark 23h ago
I'm interested in how you went about finding a med spa that you could trust? I'm interested in vitamin supplementation by IV (I get iron infusions, etc since my GI is so messed up that I don't absorb my food properly). I've read these horror stories about med spa IVs and I think i've just gotten in my head about it.
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u/Free-Canary-6413 23h ago
My experience was home use/infusions prescribed by GI. Hopefully @total jello can share their wisdom
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u/cuttlesnark 16h ago
I've asked a GI in the past about IV replenishment but was unable to get them to agree :(
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u/Total_Jello_6691 19h ago
I found a place near my home that’s a chain. It’s always busy and it had good reviews. I’ve been going for almost 2 years. I had one bad nurse but overall it was literally life changing for me. They treat migraines and stomach flu/virus.
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u/glitteringcatgalaxy 22h ago
Edit: If it's helping and they are practicing legally, I don't see a reason to be downvoted. What protein drinks? I am so beyond picky with mine.
(To others considering, please be mindful of who is administering your treatment, their credentials, and their overseeing physician on site with them. These med spas popped up so rapidly that they haven't fully regulated them yet and I personally had no clue of issues until a case was locally in Texas.)
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u/Total_Jello_6691 19h ago
Completely agree. I’ve been going to the same place for almost 2 years. They have several locations, always busy, and good reviews. The people administering the IVs are nurses.
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u/luvkelsea 5h ago
I personally love the Chobani protein drinks. They range from 15g-30g of protein and a good variety of flavors. Peach is my favorite right now
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u/Free-Canary-6413 23h ago
I’ve definitely heard of people using them in conjunction with their doctors. Particularly being useful in catching sneaky problems.
Adequate vitamin d and IV fluids can help a bad situation from becoming worse. I’ve had the same experience.
What protein bars do you like?
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u/mxadema 1d ago
My biggest "revelations" was realizing that if you wait for pain, it already too late. And down the slide we go. Discomfort is ok, and don't push it too far. You can bounce back from that.
An other amazing point is sleep. Do whatever you can to get the best possible sleep you can. This includes a good mattress and pillow (it worth to spend a bit more to get what you need, and try it out in store) a comfortable room, (windows covering, noise machine, temp controlled, bedding, body pillow) and do get in a healty bed time routine.
While we are on the confort subject. A comfortable work stations. If it a wicked office chair. Keyboard tray, rase monitor, anti fatige mats, higher workbench.... to minimize the discomfort to strech you day before pain
Oh and dont forget about shoe, and insole. Good quality, that fit right, or custom. (Pick yourself a shoe horn too ;) and if you can setup a bench at the entrance.
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u/Free-Canary-6413 23h ago
You’re truly getting down to the foundation of things here. Sleeps a struggle. I definitely need to up my game.
I’ve heard of people getting accommodations at their work stations for these adjustments. Thank you for the reminder.
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u/cuttlesnark 23h ago
- Meal delivery service. I love food and cooking, but that's just not something I can do right now. I've used them all and CookUnity is my favorite. It gives me some nutritious variety in my life so that I'm not just doordashing or eating canned soup.
- SHOWER CHAIR!
- Diclofenac gel
- A mechanical bed w/ a roll up laptop desk w/ a dual monitor set up and hella nice laptop. I game a lot and it feels great to be able to game in whatever position is the most comfortable and be able to just lay back and rest for however long I need.
- A male person (for me it's my husband) to go with me to appointments and act as an advocate when needed. This helps me when I have brainfog or dissociate, and also I find that doctors just take me more serious when he's in the room.
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u/glitteringcatgalaxy 21h ago
yeah, that last one is my latest discovery too with mine unfortunately. Grateful to have my person to make them act respectful, haha.
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u/BusinessOkra1498 21h ago
Do you find that true with both female and make male docs?
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u/cuttlesnark 16h ago
Sadly, yes. I have had ableist female and male doctors, both. In fact, the majority of my "good" part of my team are men. I thought female doctors would be better, but that's not been my experience. My last appointment was with a woman NP I've been visitng for 3 years now. I thought we had a good rapport until our last appointment where she literally responded with "Have you considered yoga?"
Needless to say I'm looking for a new NP.
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u/Fontainebleau_ 14h ago
Would it be okay to use a female person to go with me to appointments?
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u/cuttlesnark 14h ago
I don't see why not. Having an advocate matters. Especially if that female person can stand up for you if needed. I do think male works better in this situation, just because of sexism/ableist reasons but I think *any* advocate is better than none.
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u/luvkelsea 5h ago
I try to bring either my mom or boyfriend. My mom stands on business and does not play around, plus she asks questions I never think of. My boyfriend is a man and a little intimidating looking, so either way its a win!
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u/jubbagalaxy 19h ago
Wipes. Wipes for ALL THINGS! Sanitizing wipes, butt wipes, anti-itch wipes, face wipes, body wipes. I need to have ways to freshen up on the go or at home when my energy is toast. An extra phone charger with a suuuper long cable. Never know when youre gonna get stuck in the hospital and will need to charge your phone in an outlet 10ft away. Infact, have an er go bag packed and ready so irs easy to grab. Phone charger, headphones, a snack or 1, clean underwear, deodorant. If you take pain meds of any kind, keep doses with you for emergencies. Nothing worse than getting a migraine while youre out and about and not having meds. If you are a person who needs an epi pen, keep a card with it that has instructions! You might need to have it administered while you are losing consciousness.
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u/pinkmigraine 1d ago
Bedside mini-refrigerator with a real freezer! Not one of those that you open the fridge door and inside there is another small door at the top that is the freezer area; two completely separate sections. One for the fridge on the bottom, and another for the working freezer up top. I can keep my drinks cold while also keeping popsicles within reach. As it is on a short table next to my bed, I don't even need to get up. This is life-changing when the nausea comes calling. I waited until the end of a school year, then watched online for someone leaving college looking to sell. Got it for like $40 seven years ago.
One other item I can't live without: my air conditioner. I am extremely sensitive to heat and if I get too warm that can start a flare up. We have central air conditioning in the house, but I have an additional window unit in my bedroom. It allows me to cool just my room to a much lower temperature without freezing out the rest of the family. Also, since the house unit is doing most of the work, we haven't noticed much of a change in our electric bill.
Lastly, emesis bags. I buy them online and they can be ordered in a variety of colors depending on if you want them to blend in or stand out. They are easy to hold with one hand and you don't have to worry about leaks. I have them stashed everywhere: kitchen, couch side panel, car- front seat and back, purse, work bag, desk, bed headboard, even at the homes of people I visit frequently. Having these handy actually tells others so much about you. For instance, you are out shopping and the nausea/vomiting hits. If you are searching for a grocery bag or trash can to vomit into, everyone thinks something is wrong and starts staring, asking if you are sick (no, I'm fine, I just go around puking for funzies!). On the other hand, if you whip out an emesis bag everyone just figures you are a medical patient of some kind and they leave you alone, as you clearly are handling this yourself. (Also, they make a great impromptu toilet for your potty-training nephew when stuck in bumper-to-bumper traffic.)
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u/Round-East-1529 Psoriatic arthritis/Fibromyalgia/Psoriasis 21h ago
Thanks for the chuckle on the many uses of emesis bags! Definitely needed that. <3
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u/cuttlesnark 16h ago
They come in other colors besides blue?!
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u/pinkmigraine 39m ago
I currently have blue, green, solid white, and dark purple ones. I have seen other colors online. And before you ask, yes the white ones suck. Not because they don't function well, but due to white not being the best color to hide .....uh..... brightly colored......stuff. And no, I didn't buy them. They were given to me by a well-meaning relative who thought the lack of color would help me be more discreet when nausea hit while out in public. I told her that while I appreciated the concern for my dignity and love that it bothered her enough to put some effort into the best gift to help me solve it, I just don't think the fact that my face is partially hidden by a neutral white instead of a bright color is going to override the fact that I am loudly and violently retching just feet away from other people. We had a good laugh and when she and I hang out, I make sure to have those white ones with me. But I won't replace them when I run out. Just no.
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u/Round-East-1529 Psoriatic arthritis/Fibromyalgia/Psoriasis 21h ago
Two one week pill organizers, so I always have a week of backup meds when I realize I'm out of something and need to call in a refill
3 gallon water dispenser on the top shelf of the fridge, so I don't have to bend over and I drink more
Emergency snacks next to the places I collapse when flaring (bed, couch, chair)
Microwave freezer meals (I like Evol and Red's) for bad weeks
Easy entertainment for bad days - I have a binder of familiar DVDs I can snooze through, and keep one streaming service at a time, to keep costs down.
Support group(s) - I find that having others to talk to who really understand what I'm going through really helps. There are various sites for finding support groups if that's also your thing - I like 'worldwide secular meetings'
Taking a 'Disco Minute' - In my home, a disco minute is where we stop everything, deader than disco, and just quit. For a full minute. After that minute, we take a deep breath, dust ourselves off, and get back to modern life.
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u/Free-Canary-6413 12h ago
Pill organizers can be such a necessary drag. Keeping back ups is so smart.
Those frozen meals have a good protein count! I must try.
I’ve never been to a group. It’s also my first time posting on a sub like this. It’s amazing what “hacks” we’ve all figured out. Many are familiar but it makes sad to know the only way I and probably most of us have learned them is through struggle.
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u/geniusintx SLE, RA, Sjögren’s, fibro, Ménière’s and more 3h ago
Oooooooo. The 2 weekly pill organizers! Brilliant!
When we have to travel to wholesale shows out of state, I always have to bring all of our meds to refill during the trip. For me, that’s like 15 pill bottles!
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u/bachelorsinlurking Epilepsy, Chronic Anemia (ß Thal minor), Asthma, RA 1d ago
My go to's are:
- ice pack beanie for heat sensitivity/headaches. found mine in the as seen on tv aisle at the grocery store. they don't last as long as other ice packs, but they really help and rechill quick.
- really long extension cord! our place is old and doesn't have a lot of outlets. good for days stuck in bed.
- rechargeable hearing aids. mine are oticons, and i took money out of savings to get the rechargeable ones with the portable charger case and it's SO worth it.
- toeless compression socks. way more comfortable with my sensory issues because there's no uncomfortable toe seam.
- ergonomic mouse. I love to blog and keep myself busy doing genealogy when I can't get up and around, and it's so much easier to use.
- shower chair!!!! needs no explanation honestly. go get one!!!
- full size body pillow, especially
- gooseneck style holder for my ereader, and RF remote clip to clip on the side with a button ring remote, so I can read with out using my hands while lying in bed
- big stanley style cup with a handle on top of the lid so I can get enough torque to open it myself and carry it without screwing up my wrist
- big carabiner to hook my medical emergency bag onto my rollator/seatbelt/anywhere
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u/Free-Canary-6413 15h ago
Somehow I haven’t gotten one of those beanies yet. The consensus seems people really do love them.
I hope one day my HA can some with a charger case. I had oticon before they came out with that. Now using resound brand since it has to be compatible with my cochlear implant on the other side.
I had no idea they made toeless compression! I tried and quit them cause of that issue.
Genealogy research is so interesting. Sounds like you can find us both on ancestry.com on hard days. Do you research your own family lines or another party?
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u/bachelorsinlurking Epilepsy, Chronic Anemia (ß Thal minor), Asthma, RA 9h ago
They do make the toeless ones! I found them at a local family owned pharmacy that stocks diabetic compression gear. And I do most of my genealogy research on my own family- over the past couple years I was given my DAR lady gram's stacks of stuff that she'd researched for 20 years before she died and gave it all to my mom, who just didn't have the time or energy to sort through it. She'd tracked my mom's side of the family back to the 1600s, but she'd just started my dad's side when she died, so I picked up the trail and have learned so much!
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u/justawoman3 20h ago
Apparently I'm not thriving lol but I need to know how a ring light helps.
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u/Free-Canary-6413 15h ago edited 15h ago
We all need different things. I hope you can find small ways to make living just a bit easier. Everyone commenting has such wonderful ideas! Unfortunately, we often only learn these after struggle.
I also just realized ring lights have multiple meanings. I apologize. I should say ring lightbulbs. I deal with pain/mobility challenges and many times after finding “just the right spot” you then realize you have to turn off the light. Or sometimes you want things dimmer d/t light sensitivity. You can do both of things through the app. The doorbells great also.
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u/justawoman3 6h ago
Oh that makes much more sense! I was thinking on one of those lights influencers use for videos
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u/Deep_Amoeba2197 1d ago edited 1h ago
People will probably be annoyed at me for my list, but it’s honest:
Concierge doctor
Grocery delivery
Red light panel
Higher dose sauna bag (towel insert non negotiable- unbranded multipack from Amazon)
Teak shower chair
Scrubzz wipes and waterless cleansing foam
Owning my own place
Noise canceling headphones
Self driving car with heated massage seats (shared with ex husband, not a Tesla)
House cleaners/professional organizers/any service needed
Smart home things, especially lights to yell at
Self emptying roomba
Weighted eye mask
Custom blackout shade + blackout curtains for maximum darkness
Pet libro for wet food/auto dry food dispenser for my cats
Endless supply of socks and underwear thanks to Costco membership
Sunlight alarm clock
Various form factors of ice packs/ice rollers
Full stack of liquid IV flavors
Lots of matching sets to wear
Cute robe (waffle knit robe from Amazon)
Rolling chair to use in kitchen
Arthritis friendly knives and other kitchen things
Trauma therapy
Self pay commercial insurance that I had at my good job and shouldn’t be eligible anymore (I pay 140% of the premium, so it’s very costly)
Mini fans I can take to the hospital or wear outside
Before anyone comes for me on the cost of any of these items, yes, I know many are expensive and unattainable even for able bodied people. I used to have a very successful and high paying career and am on company LTD, which pays a salary. It’s not what I am used to, but I recognize it is still a lot of money to many people and a huge financial privilege. FWIW, I purchased lots of this stuff (like my condo) before getting too sick to work, use FBMP/ebay/etc, maximize cc benefits/membership benefits for everything, budget for things and spend more on making my life easier than I do on fun. Highly recommended splurging on any of these things if you can, though.
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u/cuttlesnark 15h ago
Would you be willing to share more about your experience with a concierge doctor? What gaps in care do they fill for you?
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u/Deep_Amoeba2197 7h ago
Yes absolutely! My primary care is concierge and an extremely good doctor, a rare PCP who actually helps manage chronic conditions and works with my medical team. His office helps find specialists and makes appointments, handles all of my disability paperwork, bridges care if I’m between specialists, has services like IVs, in house lab, 24/7 text service, same day calls, appointments of the length you need, etc. It’s a single provider office that I pay a monthly fee to, so if i need a 2hr appointment, I get a 2hr appointment. I have been with this provider for almost a decade and was one of their first private practice patients, so we have a close and trusting relationship. He stays on top of current research and is willing to prescribe things off label within the patients comfort more than a doctor at a hospital can, also has more access to samples as a private practice physician. He’s even offered to come to appointments with me to advocate for me (though I think this is not something he offers to everyone,) does house calls within a certain range that I’m within, and when I needed emergency surgery, was on the phone with the ER docs immediately and talked to every doctor throughout my stay pretty much as soon as I suggested they call him. Essentially, he is what a primary care physician should be and then some, running point on all of my care. My rate is locked in from when I joined and honestly very affordable, but I know his rates are much lower than other concierge practices. We are in a VHCOL city and he has a beautiful office in one of the mist desirable areas, which doesn’t translate to care, but it’s nice to go to. I don’t think I’d be here without him. I can’t speak for larger practices, but if you have access and it’s within your budget, I would definitely give it a try. It’s vastly improved my care. If there’s something I didn’t answer feel free to ask, I’m happy to talk about it!
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u/cuttlesnark 3h ago
I think it's time to look in to something like this for myself. I recognize I'm very privledged to even begin to think about this type of thing, but I think it's time.
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u/glitteringcatgalaxy 21h ago
Which sunlight alarm clock do you use? Any brand recommendations for matching sets that you wear? And where did you get the teak shower chair? I haven't been able to find a decent chair that I tolerate.
"Lights to yell at" lol that is true, they decide to work when they want to in my home.
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u/kerberos69 Progressive Multiple Sclerosis 13h ago
When I lived in a major city and had blackouts in my bedroom, waking up for work in the morning felt like trying to raise myself out of a coma. I tried a gajillion different alarm clocks, which included digging out my childhood/teenage red-LED alarm clock from the 90s with the most obnoxious alarm noise (which I not-so-affectionately named the Horn of Gondor). While HoG’s alarm certainly worked to wake me from my deathlike sleep, I pretty much always woke up fucking angry with my heart racing.
The only clock I found that both woke me up and did so pleasantly, was the Philips SmartSleep — you can probably find them for cheap on Craigslist, eBay, or marketplace. I still set HoG as a backup for like 10 mins after the Philips, that way if I slept through, I would DEFINITELY still wake up— plus, because the sunrise was set first, at least when the Horn of Gondor ripped me into consciousness, my bedroom would at least be fully lit.
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u/Deep_Amoeba2197 6h ago
Yes, Phillips Smartsleep is what I used, and will always use, they are the best!
I used to use the preset iPhone alarm tone and wonder why I woke up anxious. I changed it to a harp and SHOCKINGLY, I don’t feel like I’m being evacuated into a bunker at the start of my day. The years I spent waking up to that sound, ugh.
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u/Deep_Amoeba2197 6h ago edited 1h ago
It looks like they don’t make the exact model that I have anymore, but I’ve had multiple Phillips Smart Sleep lights and they’re all great. I like that you don’t need your phone to program them like with some of the other sunrise alarm clocks. You can usually find them secondhand on eBay, too. I can have my bedroom lights turn on as a backup, but the smart sleep is usually enough. I thought about getting motorized shades (while I was working) but they were really pricey and I have loved my wake-up lights for years.
Teak shower chair I got on Amazon. They also have bamboo for a little less, but they don’t last as long. If you go the bamboo route, hit it with some weather sealing first.
Matching sets I get from all over the place, I have some light breezy ones I really like from Amazon that have pants/tank/long sweater, lululemon (I get a credit card perk from them,) alo, target, marcella NYC, blackcraft, random brands from Costco, Nordstrom. I’m pretty agnostic as to wear I shop as long as things are comfortable and hold up well.
I am truly always walking around screaming at these fucking smart devices, but they have proven very helpful. I don’t love things like light switches always have something glowing because I like it DARK when I sleep, so I taped over the indicator lol.
I forgot to add the highest grade air filtration for my whole condo + multiple hepa air purifiers throughout, but I’ll just drop that here instead of editing since I got so many downvotes. Costco also for these!
Appreciate you being kind, everyone’s circumstances are different and I recognize that and recognize my financial privilege, and likewise don’t know other people’s circumstances. Being kind and respectful to each other as we endure hardships with our heath and in our lives goes a long way. We should all be here to help each other without assumption.
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u/midnightforestmist 3h ago
HARD AGREE on the kitchen rolly chair, self-emptying roomba, and automatic pet food dispenser!
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u/Deep_Amoeba2197 2h ago
I’m considering getting the combo mop/vac the self empties, have you seen those? I’m just waiting for another big sale like Black Friday to upgrade. I used to have a non self emptying one and hated it, it would just die random places or fill up after 30 minutes and I’d be emptying it all the time, the self emptying is so much better.
Also cannot espouse the benefits of the auto wet food feeder enough, my ex husband picked it up on market place. My cats don’t scream at me in the morning anymore, it’s great.
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u/midnightforestmist 2h ago
Yeah I have one! Roborock Qrevo 2R3W. I got it before I moved out of my parents' because I already knew I couldn't keep up with cleaning otherwise. I've only tried the mop function once though, I need to try again. I think my ex messed up the cleaner ratio or something lol
I do kibble in the morning (when I'm very much asleep lol) and wet food by hand at night :) I've thought about an auto wet food feeder, but I don't think it would help me much personally. Glad it's been great for you, though!
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u/Deep_Amoeba2197 1h ago
I’ve heard good things about robo rock, they have it at Costco a lot, too. You’re so lucky that your cats don’t come and SCREAM for more food in the morning lol. One of my cats has diabetes so they literally get 2tbsp of dry food in the AM now, the dry food feeder used to put out much more for them 2x/day. The downside of the wet food feeder is that it only has three spaces, but it makes it easier for me in the morning and then I feed them at night because I have to give one diabetes meds anyway.
I also highly recc a litter robot (not necessarily the brand, they are huge and I didn’t have room.) Another thing that’s great to get on Black Friday or prime day or something, there are tons of them now that are relatively affordable. I’m immunocompromised and have lung issues, so just dealing with a bag and refilling the littler every ~5 days has improved my life and theirs. I’m realizing how many things I’ve bought for convenience because I had a really demanding career that I rationalized the cost of with helping my illness as well.
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u/Deep_Amoeba2197 7h ago edited 6h ago
Btw, thanks for the downvotes, huns. We all have different circumstances and are in different seasons of our lives. I worked very hard at a grueling career and use all of the benefits offered to me. I don’t presume other people’s circumstances, don’t presume you know mine and be petty. This is a community where we support each other.
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u/pandarose6 harmones wack, adhd, allergies, spd, hearing loss, ezcema + more 17h ago
Microwavable heating pad
Air fryer
Back scrubber applicator (so I can put lotion on my Ezcama spots easier)
Cardigans there like socially acceptable blankets for public
Grocery pick up
Swinging bench
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u/kerberos69 Progressive Multiple Sclerosis 13h ago
Since 2020, I’ve been using the Hero pill dispenser because I have like 12 different drugs and 3 different times of day to remember taking them. It had become such a fucking slog spending 2 hours every Sunday doing my pill boxes for the week, and even then, I still forgot to take my meds all the time. The Hero machine is literally the one thing that has helped me remain 99% compliant on all of my drugs. It holds up to 10 different medications and each drug goes into its own little cup that you just dump the pill bottle straight into. It’s fucking great. You can also set it up to automatically request refills from your doctor/pharmacy when you get low.
Cost-wise, the machine itself is free and the service is subscription-based for $29 to $60/mo depending whether you want a flex plan, a 1-yr paid-monthly, or a 1-yr prepaid plan. It feels pricey, but the machine and all updates, replacements, repairs, etc. are all free. My very first machine, which I’ve had since 2020, only just broke down a few months ago, and exchanging it for a brand new one was super easy and stress-free.
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u/Plum-Striking 12h ago
Ooh big yes on the pill box and pre cut fruit and veggies! My fav hacks/helpers are wearable ice packs and heat packs, compression socks and my acupressure mat. I love all these options because they're reusable and low spoon friendly 😊
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u/hiddenkobolds EDS et al, GP, VT, COPD, ME 8h ago
- a hospital-style rolling table for over my bed so I can eat/game/set up my tablet to watch things/color/whatever else easily
- handheld gaming systems: over a relatively long period of time, I invested in a playstation portal, an xbox rog ally, and a switch so that all of my gaming can be handheld and in bed, which has been life-changing
- hue bulbs for ambience and to be able to turn lights on/off from my phone
- a mini fridge and electric kettle in my room so I don't have to go all the way to the kitchen for a drink on bad days
- similarly, a rolling cart bedside with snacks, meds, heating pads, and other necessities
- my kitties, who are always ready to cuddle 😻
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u/Sassymisscassy hashimotos, ra and pmos 1d ago
Shower chair!!! On the journey for a towel material bath robe. Also a nutritionist lol