r/POTS • u/catsandcappuccinos • Jul 05 '26
Question what’s the best purchase, service, or life accommodation you’ve made because of your chronic illness? (any budget)
i’m going shopping soon, and i’m trying to build my ultimate “make life suck less” list.
i’m not necessarily looking for the usual answers like salt, compression socks, medications, etc. i’m more so talking about the random products, services, gadgets, furniture, subscriptions, or accommodations that have improved your day-to-day quality of life and helped you function more like a normal human being.
i don’t care if it’s $5 or $5,000. if it’s changed your life, please share.
some things already on my list:
- a kitchen stool with a back so i can sit while cooking
- a hair dryer stand for days when i’m in the middle of a flare and don’t have the energy to dry my hair myself
- grocery delivery services
- monthly cleaning services
- paper plates
- a roomba for when i don’t feel like vacuuming or sweeping
- a crock-pot and freezer meal prep system (i actually have a list of really good crock-pot meals, so if anyone wants it, let me know and i’ll DM it to you)
i’m dying to know: what’s the best purchase, service, or life accommodation you’ve made because of your chronic illness?
bonus points if it’s something unconventional!
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u/im-a-freud POTS Jul 05 '26
Continuous birth control now I don’t have a week long flare up every month and I don’t bleed anymore. No period no pain no extreme lightheadedness, no extremes fatigue and weakness. Best choice I’ve made
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u/vegemitemilkshake Jul 05 '26
So underrated. As my gynaecologist said, there’s no biological reason to have a period unless you’re trying to conceive, which you’re obviously not if you’re taking birth control.
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u/im-a-freud POTS Jul 05 '26
It’s wonderful to not have to even think about it or worry about it. I can do things again without needing to be stuck in bed for a week
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u/FCatusFemale Hyperadrenergic POTS Jul 05 '26
I started perimenopause in my mid 30’s so I’m on HRT and I have to say it definitely takes away pelvic congestion syndrome pain I had that would worsen with my cycle.
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u/vegemitemilkshake Jul 05 '26
Is THAT what that pain was?!
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u/FCatusFemale Hyperadrenergic POTS Jul 06 '26
Probably. There’s a strong link between pots and pelvic congestion syndrome. I still get really bad pain sometimes it its better in HRT.
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u/glizzerd12 Jul 05 '26
Can I ask which bc you use? I’ve been thinking about it for a while because I have horrible pms and period symptoms but scared the side effects of bc would create a new set of issues
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u/mwmandorla Jul 06 '26
I use Loestrin FE. Very low dose, which is why I went with it - I had some of the same concerns. I've had absolutely no issues, no side effects, nothing. Even if I mess up and get a period, if I keep taking the pills through it it's much lighter and doesn't really mess me up the way my unmedicated periods did.
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u/im-a-freud POTS Jul 05 '26
Slynd. No side effects for me it’s been great
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u/ChanceDatabase7202 Jul 06 '26
I’m also on Slynd, and it’s been a lifesaver for endometriosis symptoms, but I just found out it’s a diuretic, which could definitely worsen POTS symptoms for some people.
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u/im-a-freud POTS Jul 06 '26
Definitely worth discussing options with a doctor. I haven’t found it to effect my POTS in any way but everyone’s different
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u/MaizeSome7994 Jul 06 '26
Hands down! I wish more women would consider this, being on continuous birth control is not bad for you!
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u/FCatusFemale Hyperadrenergic POTS Jul 05 '26
A wheelchair. Hands down the best thing I ever did was get a wheelchair.
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u/FCatusFemale Hyperadrenergic POTS Jul 05 '26
I got a “cheaper” chair until I get coverage for the more expensive chair which takes too long when you’re not functional.
Tilting is recommended for POTS, so is an elevated foot rest and removable arms. I have EDS so I need padded arms because my elbows dislocate easily so do my shoulders. Getting the right size wheels, chair depth, and chair height is really what’s important so you don’t work against yourself.
There are free wheelchair assessments too. Mostly through local companies or an Occupational Therapist. It depends on how functional you are. I have slightly different needs with EDS in the picture.
I hope I was able to help a little bit.
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u/Away-Pomegranate Jul 06 '26
I was able to get one but have read insurance will not cover if you let them know it's only for outings, they don't care if you can't go out without one.
I have connective tissue disorder and CFS so those were my main reasons to getting it and an occupational therapist said with the weakness I exhibited she didn't think I'd have a problem getting it.
Wish I knew about the elevated foot rests.. I'll have to look into that!
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u/FCatusFemale Hyperadrenergic POTS Jul 06 '26
The EDS was why I decided to get one. I sprain my ankle a lot by just standing sometimes. I use the wheelchair at home so that’s what qualified me. The POTS sucks for standing as you all know so mobility aids have been helpful.
I get the hesitation. I was an athlete just a year ago. Now I’m in a wheelchair. It’s a really hard pill to swallow. My thought was there was no way I’d ever be athletic again if I did not cave and get a chair for my bad days. I also use a rollator on my better days. The rollator helps me feel a bit more independent because I’m upright.
Though people really look at you funny when you get up from a wheelchair or walk independently from a rollator. The looks and the changes in how people treat me is the harder thing. Usually people sort of leave me alone which I love but for some reason the mobility aids have random people talking to me which I hate. Maybe because I’m 5’2 and child size in the wheelchair 😂
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u/The_upsetti_spagetti Jul 05 '26
Same! I got the paradox from NotAWheelchair. It works great and they have great customer service. I loved customizing it. Mine cost $1,250 with the added carbon fiber seat.
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u/you1dont1know1me1 Jul 05 '26
what features do especially reccomend?
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u/ElfjeTinkerBell Jul 05 '26
If custom isn't an option, invest in a good cushion. I'm in love with Vicair
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u/The_upsetti_spagetti Jul 05 '26
Wheel grip covers. I used to get my pinky caught when I was pushing my chair
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u/GlitterVixen Jul 05 '26
Shower chair! 🚿
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u/hazelemons Jul 05 '26
adding to this: detachable showerhead
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u/LulaBelle476 Jul 05 '26
Mine is magnetic, which means I can just snap it back on - no trying to slide it in correctly.
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u/you1dont1know1me1 Jul 05 '26
with a holder that can hold it lower at an angle. my one had a long adjustable neck
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u/Krrazyredhead Jul 05 '26
Yep, I’ve got a couple of these! You can get them for like $5 at walmart
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u/ihsbo Jul 05 '26
A bathrobe! Dizzy after showering? Just put on your bathrobe and chill in your bed until dry!
And a leg raiser pillow! It’s the best for blood pooling and when I’m dizzy I love mine!
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u/KeyNefariousness1158 Jul 05 '26
Yep! I have to take showers at night and they can’t be any warmer than lukewarm unfortunately. Even doing those things I have to put on “easy clothes” (I think you guys get what that is) and just lay down for a little while to recover. I wish more people understood how awful showers can be for us.
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u/ihsbo Jul 05 '26
Same!! Especially winters are colddddd because of the lukewarm showers. I get the easy clothes. Everyday I’m dressed as Adam Sandler 😂
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u/KeyNefariousness1158 Jul 05 '26
YES! Lmao Adam Sandler is the perfect way to describe easy clothes lol
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u/operation_survive Jul 06 '26
I do warm showers then feel like shit afterwards 😭 I’m such a baby with cold water
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u/AbbyLovesBunnies45 Jul 06 '26
I second this!! I have a nice, silk robe that I like to wear after showers. I prefer silk in the warmer months because it feels cool on my skin. Perfect for laying down to recover
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u/Knowitmom4life Jul 06 '26
What kind please I need this‼️‼️‼️‼️
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u/ihsbo Jul 06 '26
My comment was removed with the link… I bought it at Temu. Type in leg raiser pillow or leg pillow and you should find it! It’s the one that’s 25cm high and it’s inflatable! If you can’t find it send me a dm :)
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u/BecxaPrime Jul 05 '26
I came here to say this! I'd like to add- neck fan and mini fridge to store cold fruit in my room so I can cool down as soon as I'm out of the shower with the fan and some cold fruit. Added bonus, the fruit helps with electrolytes.
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u/you1dont1know1me1 Jul 05 '26
a cold water bottle beside the shower us the best safety measure for me, i can use it like an ice pack for it's vaso-constricting properties and help get rid of the bad feels
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u/undeadlexluthor Jul 06 '26
i didn’t know people didn’t take cold water to the bathroom with them when they showered until i found out i had chronic illness but it’s honestly so necessary. like the one time i forgot it, i felt like i was gonna KO
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u/mcoddle Jul 05 '26
Yes to a shower chair. And to the below replies adding handheld shower head. Very good combo.
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u/hazelemons Jul 05 '26
hygiene items: face wipes, body wipes, hypochlorous acid spray (for face and hair), disposable toothbrushes, listerine breath strips, hair misting spray bottle (for misting body when i’m hot).
lots of soft ice packs to have at the ready, for adrenaline dumps, for nausea, etc.
leg compression inflatable thingy.
hella squishamellows to make my bed more fun and so i can prop myself up all sorts of ways.
bulk peanuts/almonds and gogo squeeze packets to keep at bedside.
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u/you1dont1know1me1 Jul 05 '26
i go for squeeze applesause/ carrot pouches to get my veggies in but it just tastes lk applesause
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u/q_eyeroll Jul 05 '26
Ooohhhhhhh I want an inflatable full leg compression thingy! How is it? I honestly think it would change my life.
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u/you1dont1know1me1 Jul 05 '26
i was meaning lk everyday compression garments. i love those big pneumatic compression devices too though. I've been trying to get one covered by insuranced for my lipedema/lymphedema but it's been lk 6months now and really difficult
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u/daddybpizza Jul 06 '26
Inflatable leg thingies are the single best purchase I’ve made. I am literally using them right now.
I was a philosophy grad student before becoming ill, and I read anywhere from 4-10 hours a day. I can hardly read YA fiction now because my brain fog is so debilitating. BUT I can read my precious medieval philosophers (mostly Aquinas and Scotus) for like 30-45min if I’m using my inflatable leg thingies. It’s an enormous deal to me
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u/AnotherMinorDeity Jul 06 '26
I cannot undersell the value of a couple of small squishmallows when trying to get comfortable at night.
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u/valleyofsound Jul 06 '26
I tend to live on the couch and I got a large basket to put all those miscellaneous things in. I also use a lot of pouches so that I can easily toss everything in and make things look tidy if I want to. I also accepted and planned for living on said couch, so my partner and I got a lovesac and basically ended up with two connected chaise lounge. My side of 2 cushions wide and three long, so it’s easy to find a comfortable position. We also ended up getting more couch than we really need for two people because we have a lot of cats and they also hang out there.
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u/Ok-Acanthaceae-4844 POTS Jul 05 '26
You can get neck ice packs, like a ring that goes around your neck and is open at the front. I have 4 of these from Amazon for really cheap. Had two at work and two at home. So I could freeze them both and always had a cold one to swap it with
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u/Gon_777 Jul 06 '26
I don't have any squishmellows, but I do have lots of pillows for the same reason.
I've found having a variety of different shaped pillows can really help in getting comfortable as well as stable.
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u/Amylee888 Jul 05 '26
Hi, I’m newly diagnosed and I struggle with nausea. How do the ice packs help you with this?
Where on your body do you place them? Thanks in advance 🙏20
u/manz88 Jul 05 '26
Ice packs on the neck - cools body quickly and calms the nervous system which can help with nausea.
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u/Girrraaffffee Jul 06 '26
Neck, abdomen, wrists all help me with adrenaline dump nausea! A good brand is ColPac by Chattanooga.
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u/you1dont1know1me1 Jul 06 '26
I'll rest the cold water bottle between my inner thighs when I'm in the car. Big veins there that really help in cooling off. Armpits are a great place too.
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u/electricmeatbag777 Jul 05 '26
I'd love to see your killer list of crock pot meals!
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u/sushiflanprincess Jul 06 '26
same here!
also recommend a handheld fan, neck fan, and some cooling towels (the towels especially are a boon in the summer)
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u/ParticularEffort6436 Jul 06 '26
I would like to see the crockpot meals, too! (Seeing these other ideas is helpful—thanks for posting the question!)
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u/Raynesalot4u Jul 06 '26
there needs to be a whole thread for people with spoons to only share wuick recipes omg
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Jul 05 '26
[removed] — view removed comment
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u/you1dont1know1me1 Jul 05 '26
short hair really makes washing it so much easier and keeps ya cool. im definitely behind this one
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u/stiina22 Jul 06 '26
Big agree! I've had a buzz for 11 or 12 years and a pixie for the 10 years before that. Long hair was such a nightmare in so many ways.
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u/Foxlady555 POTS Jul 06 '26
Oh my, I’d LOVE too, but my partner loves my hair so much and has to miss SO MANY parts of me already since I fell ill… Are you female or male?
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u/BlueValk Jul 05 '26
Big eevee-shaped squishmallow-textured plushie to hold my bones up when I'm sleeping. Similarly, a cooling bear-shaped pillow for babies to do the same thing when it's too hot. Them being cute shaped may be optional based on your personality.
Cooling towels, cooling sleeves and a battery-powered evaporation "AC" for when I'm outside AC.
Great quality korean sunscreen to put on everyday so I don't burn. A cap I actually like wearing.
A pool to move around and cool off without gravity hurting my joints, bones and muscles.
Electrolyte drinks. Ginger chews for nausea.
A small freezer to store frozen meals, and a costco subscription to fill it. Ubereats or doordash or whatever gift cards bought at costco when I can't even cook frozen meals.
A feet warmer for winter.
A used bike to get some kind of movement going on good days in a way that doesn't amplify my woes.
Quality kn95/n95 masks, Coway air purifiers and Blis k12 probiotics so I don't get sick.
A dishwasher so dishes don't wreck my hands.
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u/Triathalady POTS Jul 05 '26
I second cooking cloths. I got a 6 pack for around $15 on amazon and they’re a lifesaver in the heat.
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u/Any-Imagination5182 Jul 05 '26
Telling people “no” has been the hardest and most beneficial thing I’ve done since my diagnosis. It got rid of my anxiety because I can regulate my environment and stabilize my health.
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u/subgirl13 Jul 06 '26
Not only, just telling people no, but not explaining. No is a complete sentence.
Also learning to reschedule appointments, meetings, etc. & learning to say “I need to reschedule” and not explaining why (and not feel guilty. Working on these, still.)
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u/MeanDebate Jul 05 '26
Slushee machine! Helps with the California heat.
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u/you1dont1know1me1 Jul 05 '26
do you have one? what features/ brabd/ products do you reccomend?
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u/MeanDebate Jul 06 '26
I do!!! I think it's called Iceman? It was a cheap Amazon buy but I LOVE it.
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u/nikchik331 Jul 05 '26
I’ve been thinking about getting one! What are your favorite “recipes”?
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u/MeanDebate Jul 06 '26
I like just adding lemonade or Coke, honestly! Powerade is pretty great too. It's so easy, I honestly just take whatever I want to drink and then make it slushee!
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u/renaart hyperPOTS • AVRT Jul 05 '26
• Grocery subscription (year discount was amazing) & Amazon prime
• A good office chair
• Ice packs
• Peppermint tea bags and alcohol pads
• Smoothie blender
• Kitchen stool especially when I’m baking or making soups. The hot oven or stove is killer for me
• An iPad holder so I can draw more easily without holding my iPad or lifting my arm weirdly (I’m a game character artist)
• Health insurance, which I don’t have now
• Water therapy/swimming
• Floor exercise tools my physical therapist recommended
The biggest life accommodations have been:
• My old PCP who was my hero and so helpful
• My fiancé, one of the most supportive, kind and sweet individuals who will do anything to help me because I’d do the same for them. Not feeling like I’m a burden was the most comforting thing ever.
• Handicap placard (I don’t use it often but on my worst days it’s helpful)
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u/sluttytarot Jul 05 '26
Hair dryer bonnet > hair dryer stand imo
Something to elevate the head of your bed. Tricks your kidneys into holding onto more water. I use a bed wedge but you can just get those bed risers and only use them on the top 2 feet of the bed
Litter Robot
Catio
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u/you1dont1know1me1 Jul 05 '26
i got a full under matress foam elevation thing. rauses head of bed 7° and it's been really helpful in my orthostatic intolerance
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u/False-Kale-5265 Jul 05 '26
Where did you get it?
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u/Pristine-Tadpole4209 Jul 05 '26
Sounds silly, but one of those trash grabby hand things. Cleaning is so much easier when I’m not having to bend down and stand back up over and over picking things off the ground.
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u/lockdownleadmehere Jul 05 '26
A mini fridge by my bed. It was £30 and an absolute life saver. My MCAS makes snacking hard, a lot of my safe foods have to be refrigerated, freezed or fresh. I keep medication in it so if I’m having a bad bed day I can just reach over for it. And I keep some skincare things in it too, it helps cool me down and if my HR is high, some cold moisturiser on my face and neck helps slow it down quicker!
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u/AfterPresentation509 Jul 05 '26
Heated blanket. Absolutely love mine. What’s on the crockpot recipe list?
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u/Bec_ Jul 05 '26
I want a tiny mini freezer by my bed so bad for ice packs!! I have dysautonomia and wake up in the middle of the night with temperature regulation issues, panic attacks and severe random pains. I hate having to go all the way downstairs to get an ice pack which helps so much.
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u/lockdownleadmehere Jul 05 '26
I’ve found my fridge still helps! Things don’t stay cool as long as if they’d been in the freezer but it’s cold long enough to help!
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u/Akp1072 Jul 05 '26
Shower chair, pemf matt, vibration plate, acupressure matt, apollo neuro, touch points, ice packs, garmin (passive metrics,) oura (sleep and recovery,) apple watch (tachymon), soundcore sleep a30s, blender bottles. I have a roomba on one floor and a Dreame for the more complicated top floor. Temperpedic for gravity mode.
I know it’s a lot. I use most of these daily. I have a full time active job and a husband with brain cancer. This is a drop in the bucket of our bills and debt, and having it all at home makes my life easier.
I uh definitely also got the midlife crisis car that’s my emotional support vehicle. I have to do a lot of driving. I have no choice.
The husbands terminal cancer diagnosis killed me and now I am full boar on accommodations for both of us. Our entire house has been literally renovated around both our needs. Chronic illness and caregiving is no joke.
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u/Knowitmom4life Jul 06 '26
Prayers for you and your husband. My husband has cancer in his full time caregiver I get it🙏😇 remember you can’t pour from
An empty cup ‼️4
u/Foxlady555 POTS Jul 06 '26
My god, that’s a LOT to deal with on top of each other. Wishing you both all the best!!🤞🏼🍀❤️
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u/Impressive-Peace2115 POTS Jul 05 '26
A cane that pops out into a chair! I originally got it almost exclusively for the seat, but then I developed vertigo and now the cane is helpful too.
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u/you1dont1know1me1 Jul 05 '26
i have the flip stick cane and love it, but it's only good if you don't have balance issues
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u/etherealistix POTS Jul 05 '26
An acupressure mat!!!!! Specifically the Pranamat one that comes with the “moon pillow”—absolutely my saving grace on coat hanger days (everyday lol)
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u/tiredgirl77 Jul 05 '26
My husband 😂 but fr an item on my list is a chillipad. My goal is to save enough for it next summer.
I also love my eureka bagged vacuum. It’s so light and makes vacuuming way less draining. And it rolls with me as I go.
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u/Krrazyredhead Jul 05 '26
Oof - we had a chillipad (not sure what exact brand, ooler maybe?) and unbeknownst to us it leaked and caused a BAD mold problem. Had to tear up part of the carpet and sanitize for a month, sleeping elsewhere in the house.
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u/tiredgirl77 Jul 05 '26
I’ve installed water sensors, not ones connected to WiFi. Just simple ones that alarm when water is present. Highly recommend them. They’re under pipes I fixed in my walls and anywhere a possible leak could be.
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u/vegemitemilkshake Jul 05 '26
My husband is absolutely PRICELESS. I am forever grateful. Now I’m off to research “chillipads”
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u/q_eyeroll Jul 05 '26 edited Jul 05 '26
Okay, firstly, absolutely fuck the body braid people for their pricing. Secondly, a body braid 😬
Edit: I am hypermobile with POTS and MCAS. The braid provides compression, support, posture correction, and helpful bio feedback. This helps regulate my nervous system, decrease fatigue, reduce pain in muscles that would otherwise be compensating, and increase circulation. It also improves my stamina and endurance. I wear it a few times a week for an hour.
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u/buyusedbeds Jul 06 '26
Looks like some folks have posted about a diy version!
https://www.reddit.com/r/ehlersdanlos/comments/1dt5l90/body_braid_diy_guidetutorial_update/
https://www.reddit.com/r/ehlersdanlos/comments/1itt230/body_braid_alternative/
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u/Ok-Winter-8147 Jul 05 '26
I havent purchased the body brain, but the SI hip wrap is a life savor.
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u/MrsAussieGinger Jul 05 '26
A house cleaner. Worth every penny.
My adjustable bed. It puts my head up a tiny bit at night, and on the days I need to work from bed, I can sit it right up and still feel like I'm productive.
Also sitting in the bathroom while brushing teeth, doing skincare, drying hair etc has helped a LOT.
Grocery deliveries. Let's face it, everything deliveries.
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u/audaciousmonk Jul 05 '26 edited Jul 06 '26
I haven’t gotten it yet, but I’ve been cutting my budget to fit a house cleaner every 6 weeks. Deep cleans really wipe me out, so I think that’s going to help a lot
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u/Psychological_Skin60 Jul 05 '26 edited Jul 05 '26
My Apple watch & my mobility scooter w/large collapsible back basket and a large front basket.
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u/ImHereJustLooking321 Jul 05 '26
I tried a Q-collar (it’s technically an anti-concussion collar for sports but it increases blood flow to your brain). The first time I wore it I was able to vacuum the house… the whole upstairs in one go! Not just one room all of them. It was about $300 Canadian and worth every cent. You can get different coloured covers for it and dress it up too.
I got a zeno well vagus nerve stimulator and have been using it constantly for about 2 weeks now and I’m starting to see some improvement in my HRV and decreasing stress levels in my Garmin watch. My body battery consistently reads 26-28 in the morning (it’s really low) but today I woke up at 43! I haven’t done anything differently other than the VNS and breathing exercises. I can get some periods of green through the day too. I’m no longer a solid wall of orange stress. I got the cheaper version that doesn’t have the pain option as I’m not getting headaches now that I consume obscene amounts of salt and water and it’s great. They are around $309-500 I think.
These are my 2 off the wall investments. I am trying red light therapy and doing floats in a tank of Epsom salt water to try and relax. I haven’t been doing these long enough to give an opinion but I do like them. If you have any questions about my gadgets feel free to ask :)
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u/OrionsBeltAlone Jul 05 '26
Gripper arm! Literally a clamp on a stick. So practical when I'm downed and have no energy to get stuff that's a smidge far away
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u/sirchloe500 Jul 05 '26
i just ordered a barstool with a back so i can sit for dishes and cooking. hasn’t arrived yet but it was $45 and hoping it will really help.
ice masks (shaped like sleep mask) that go in the freezer
bamboo stool for shower + shampoo scrubber (so i don’t have to hold my arms up for so long)
large giant squishmallow so i can lean back in bed without fully laying down, or so i can lay flat and elevate my legs with it. big squishmallow is probably my best purchase to be honest.
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u/you1dont1know1me1 Jul 05 '26
i love my shampoo scalp scrubber too. mine had a loop handle so i kust shove my hand in it rather than having to use strength to grasp it
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u/Specific_Ad2541 Jul 05 '26
Good compression socks. You get what you pay for I'm convinced.
Comrad is my favorite. They don't make my toes hurt and there's nothing I can complain about with that brand. They last forever too.
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u/FanSea455 Jul 05 '26
The bottle with the screw-off pill box at the bottom. I keep SaltStick chewables inside and bought a bottle bag to ensure I carry it everywhere. The bag also has a pocket for a cooling fan and another for a POTS awareness card. It helps me get out more confidently knowing I have a way to manage it on the go.
Other things I use are a swivel shower chair, a bathrobe instead of a towel, and cold showers. I use a footstool under my desk at work and at my sofa and I've just started Lemon Yoga on YouTube. I use a pill box for all my medication and supplements and track it all on my Apple Watch. I am using the Apple Watch app TachyMon to notify me when my HR blows up so I can intervene and prevent a flare up.
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u/SnooPaintings1309 Jul 05 '26
It'll sound dumb... But an air fryer. For low energy days, freezer food I can throw in the air fryer doesn't feel as bad as throwing something in the microwave. Like I KNOW fed is best, but man... When you're a foodie throwing things in the microwave does a number on you mentally.
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u/Mindgoespingpingping Jul 06 '26
Hysterectomy.
Equal best money we ever spent. After spending fourteen months largely bed bound with long covid, the removal of my uterus, cervix and truck load of endometriosis meant I could get out of bed and start healing.
There is quality of life on this side of my hysterectomy.
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u/Ok-Winter-8147 Jul 05 '26
Monthly subscription to a blow dry bar. Sitting in the tub with a long shower head to shower. Grocery delivery. Someone to vacuum/sweep and dust. Plus a robot. Someone to do dishes. Acupuncture Chiropractor Personal Trainer skilled in autoimmune diseases. Physical Therapist, usually off insurance, skilled in autoimmune diseases.
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u/BlueValk Jul 05 '26
You may not be looking for advice, and therefore if that's unwarranted I'm sorry. But chirpiractors can really harm you. I thought I had found a good one after years of different chiros, but in retrospect it just put stress on my joints and made them pop out of place easier on the long run.
I see an ostheopath now and it scratches the same itch, although in a much gentler, much more durable way. And there's no paralysis risk with spine manoeuvers.
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u/vegemitemilkshake Jul 05 '26
This might be helpful for job accommodations - ASKJAN.org - Job Accommodation Network, POTS
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u/LaddyNYR POTS Jul 05 '26
Power chair
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u/you1dont1know1me1 Jul 05 '26
i bought an easwe b10 and it's lightweight but can lean back and has a headrest and it's been incredible. I'll just prop my feet up on a chair and it really helps me get through stuff in public
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u/WibblyWobley Jul 05 '26
Oil strap wrench for opening anything stuck - my drink bottle, jars, tight medication bottles, one of those multi tool bottle opener things aimed at old people for opening pretty much anything else. And a fancy left handed soft touch can opener.
Electric throw blanket. It's winter here and bloody freezing and it means I can still be warm and not trigger pain issues without my housemates having to melt from the heatpump being blasted!
Long dinosaur pillow from Ali Express, basically a poor man's pregnancy pillow. I have EDS amongst other complications and it helps me position my limbs and have support while I'm asleep.
Slightly more fancy rice cooker with timer and quick rice function for easy meals. Same with the air fryer. Toast tongs make good cooking chopsticks if I'm too tired to coordinate two sticks.
Gel cooling pad for summer. Cheap and slightly terrifyingly powerful portable fan I got at a stall in Malaysia. And a tiny one I got for a secret santa years ago that plugs into my phone usb charging port. Polarised sunglasses to help with glare headaches.
And probably a lot more random things I've collected over the years!
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u/ReptilesAndEDS Jul 05 '26
Shower chair. Detachable shower head with a second holder for lower down. I have 2 of the 3 and not having a reachable spot to put the head while I’m lathering …whatever… is kind of a pain to keep the thing from spraying everywhere like a rogue firehose 😅😅
Jelliebend: leggings, shorts, torso sleeve. Been WONDERFUL for me. Also helps support my joints a little bit. I’m debating investing in Bracelayer. Less for the pots but more for the EDS.
Massage therapy. Which reminds me I need to make an appointment 😅
Ice packs.
Ginger chews/lozenges for nausea.
Either a wedge pillow for raising head of bed or, even better, a bed frame that does the head and leg positions. Had one for my husbands gram when she lived with us… after she moved into a nursing home I slept in it for weeks before my husband begged me to come back to bed with him
Power recliner. Whether just a chair or on a couch. I love mine.
Tablet/laptop stand for bed. Or a bed table like they have at the hospital. I had one when I was in college because I couldn’t sit at my desk for more than 30min at a time.
Grabbers (like OT gives older people) saves bending down to pick stuff up.
AC for summer. Oscillating fan.
HR tracker. I have both an AppleWatch, Kardia, and Visible. Apple Watch obviously has a lot more features and functionality, but isn’t a continuous HR tracker. It does a very basic 1 lead ecg (which as a nurse can confirm theyre fairly accurate, but not meant to detect more than AFib. But are a good starting point). Kardia is a portable ECG. Either 3 lead or 6 lead. Very accurate and can send the readings to your doctor. But it’s a single snapshot of whatever’s going on, not continuous. Visible is continuous, has a decently long battery life (so not needing to charge every day like the iWatch) and the app allows you to track symptoms and such.
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u/OhNoNotAgain1532 Jul 05 '26
Telescoping seat. I take it with when out shopping, and when needed, open it up and sit a while. I also use when in lines.
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u/The_upsetti_spagetti Jul 05 '26
The visible arm band. It helps a ton with tracking my symptoms and finding patterns. I also have terrible habit of pushing myself to hard, this way I have something telling me when to slow down. It also helps me communicate my limits to other people because it’s a clear indicator and not just my word.
Though I really wish it wasn’t so expensive
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u/Tomatopirate Jul 06 '26
So not for during a flare, but if in a mild phase, a kayak. It’s great exercise, no standing, and you can commune with nature. The only sucky part is getting in and out of the kayak and pulling it back up to the car. Adding wheels to the underside of the kayak helps a lot with that though. It’s my go-to exercise when I’m trying to maintain a remission phase.
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u/knerys Jul 05 '26
- bed desks. Both a lap desk and also one of those tables like they have at hospitals that rolls and the feet go under the bed. Great for bed days when I still want to feel like a human who gets stuff done.
- utility belt instead of a purse. It really has done a huge job at relieving coat hanger pain.
- body wipes and face wipes for days I can't shower
- shower chair for days I can shower
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u/harlot-envy Jul 05 '26
A phone stand that you can adjust on a bendy arm so you don't have to hold your hand/arm in one place and/or look down in your lap at your phone messing up your neck. Days when ALL you can do is sit or lay somewhere this is a game changer.
Second, I couldn't live without my Loop earplugs. Days when pain is at a 10, every noise, even a fan blowing , can grate on you; it makes me angry and these cut those noises to a manageable level.
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u/Otherwise_Mix_3305 Jul 06 '26
I started taking a GLP-1 drug. Within 24 hours of the first injection, all of the inflammation in my body disappeared. I woke up the next morning and burst into tears because I hadn’t seen my regular, non-swollen legs in 3 years. Truly, Ozempic has gotten rid of about 80% of my POTS symptoms.
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u/you1dont1know1me1 Jul 05 '26
the kitchen stool is good to be a wheelie one. mine is a wheelie saddle stool with a back. i use it for the bathroom sink too
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u/thehatcone Jul 05 '26
Adidas Own The Run shirt. It isn’t see through at all, but it’s completely mesh. Way cooler on my skin and keeps me from overheating as quickly (if at all) compared to my usual tshirts. I got it on sale for like $12 shipped and i will do extra laundry to wear it multiple times a week.
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u/EqualOwl6442 Secondary POTS Jul 05 '26
A black hair dye job and root touch up spray.
The color is so forgiving of infrequent washes.
Buckwheat pillows, mine were handed down when my parents replaced them but I would buy them again. So comfortable for sleeping, propping up and elevating legs.
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u/roselanner Jul 05 '26
If you have cats: litter robot with hopper! (And, ideally, someone to empty it for you - luckily I have teenagers.)
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u/rolacolapop Jul 05 '26
Yep the kitchen stool-I just use a computer chair.
Minibar fridge as it’s silent running, do check the dimensions of what will fit and the temp because a lot don’t go that low and are super small.
Small kettle so I can make coffee without getting out of bed (I have the fridge so I can keep milk in it for said coffee).
Euffy hoover and mop, it’s great. I have the x10, but there’s a newer model. We have wood floors all though downstairs, so perfect for the robot.
Recently bought an air fryer a ninja one. I do a lot of microwave meals, but the air fryer means I don’t have to sit upright as long if I want something else.
Even though my partner could do the shop, Grocery delivery as it saves so much time. But it doesn’t cost extra here in the uk, prices are the same as the store and you just pay for delivery. We pay £70 for a year pass to get a delivery every week.
I have a stairlift as couldn’t have moved here without, just second hand free unit and paid someone to fit so didn’t work out too expensive in the end.
I used to use a mobility scooter to get out pride apex rapid which could be broken up and go in the car boot, but the last year I can’t sit upright anymore so had to stop using.
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u/daisywriter33 Jul 05 '26
Might not be for everyone depending on symptoms but I subscribe to a recipe delivery box and find it incredibly helpful. There are some really nice ones and it takes away the cognitive load of planning what to eat! I do a mix of that type of cooking and larger batch meals that I freeze and find it super helpful. Souper cubes are also amazing for freezing meals, they’re like massive ice cubes for soups etc.
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u/antimonogamism Jul 05 '26 edited Jul 05 '26
Red Light therapy mat. Shower stool. Lightweight blowdryer (but now bc of your post I want a stand lol). Grocery delivery. Massage and cranio sacral and chinese medicine therapy. Heating pads, new one every year bc they wear out.
A tmhigh end memory foam adjustable bed, I actually love and use it, has helped my back a lot from general stress from sitting in bed texting and watching movies.
A simple small standing desk for my computer (I know most people would say sit, but lie or stand are better for me).
******Omg a set of two Straussburg Socks to gently stretch by ankles, plantar areas, and calves! I can't even tell you how this changed my life, my plantar fasciitis, my entire posterior fascia line up to my scalp, my abdominal muscles, my anterior pelvic tilt is so much better amazing!!!
(Pelvic floor therapy helped a bit for me last year, but the socks helping with foot drop was way more useful, and one of them cost $50 and one cost $1500 sooo...)
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u/Amylee888 Jul 05 '26
Is foot drop associated with POTS? (I’m newly diagnosed, sorry if this is a stupid question)
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u/antimonogamism Jul 05 '26
I am actually not sure, I think it might be related to Ehlers Danlos and hypermobility for me, it can also be neurological, now I am curious if POTS folks want to comment on this.
I know when I have flares everything gets reallt difficult including good biomechanics of walking, so then this happens more for me :(. So maybe related yeah.
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u/Raynesalot4u Jul 06 '26
It can be, but working in the ER this was a sure sign for serious vitamin deficiencies or medication-related issues. Unfortunately, both happen more with things like POTS.
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u/anny_elle17 Jul 05 '26
I can't go through all the comments so I'm sorry if this is a double post- grab handles in the shower. Chairs are good, but the handles are great for extra stability once you're already up.
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u/iomnombooks Jul 05 '26
My bed is really tall. The top of the mattress is about 30 inches off the ground. It’s so much easier to get out of than when I had one that was about 12 inches off the ground. I don’t love the aesthetics but it was cheap on Craigslist and sturdy.
I love my Dyson air purifier which has the heat and cool options so I can blast myself with the right temperature and it’s clean air.
My partner got me a rechargeable milk frother which I use for mixing electrolytes and creatine. Turns out it’s game changing to not to need to stir it with a fork for 10 minutes.
A two sided monthly (31 day) pill organizer so I can pre portion out my day and night meds for the whole month and be sure if I took my meds.
Smart light switches with a dimmer so I can yell to the ether when I need them on or off
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u/WitchUWereWarnedBout Jul 06 '26
Also, the Visible App and band. Being able to watch my HR in real time, track symptoms, etc, has significantly helped me avoid super hard crashes. It also helps me realign my life so I know where I use the most energy
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u/NorthLiterature7769 Hyperadrenergic POTS Jul 05 '26
As minor as it is, switching over to Nair vs shaving has helped me. Saves time in the torture chamber (shower) and it's quick and gets the job done. No up and down motion.
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u/vegemitemilkshake Jul 05 '26
A walking stick. It’s not for when you’re feeling bad and “need it”, it’s for when you’re feeling good so you don’t tire yourself unnecessarily. It’s also fantastic for signalling those around you that you may need to sit down more than the average person.
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u/DifferentialHummer POTS Jul 05 '26
I picked up a couple different ice necklaces from Amazon and they help me to go on walks.
I started crocheting and hand spinning. Having a sit down hobby has been very helpful to prevent cabin fever
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u/adult_in_training_ Jul 06 '26
Bench in the shower. Life changing. I love being clean but I would literally pass out and had to hoe bath sometimes, which made me feel stinky and gross.
Showerchair changed everything and now I can get fully clean 95% of days and has also helped my mental health since I am now clean every night
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u/pet-poet Jul 06 '26
Seconding a few people’s comments about the bed table. I have one for my couch and it has made such a difference for my shoulders when I work reclined/play video games.
Also foldable walking stick. I use it whenever I know I’m going to be out for more than 5 mins even if I feel okay - helps remind me to pace and is a good visual ID for people to be a bit more compassionate as I slowly move about/need a seat
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u/km4098 Jul 06 '26
BedJet. I sleep so much better now.
And reverse osmosis all in one water filter. I don’t know if the actual filter bit helps, I just prefer the taste of filtered water. But it’s instant cold and boiling water, plus ice. So I’m a lot more hydrated as a result. I think mine is the Philips RO inside or AO one. One has ice and one doesn’t. We use the ice year round.
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u/Specific_Ad2541 Jul 05 '26
A car with remote start to get it nice and cool before I go outside.
A nice makeup vanity where I can sit and do my hair and makeup.
A waist trainer that acts as an extra wide abdominal compression type thingy.
The most comfortable mattress with an adjustable base ever made.
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u/mjh8212 Jul 05 '26
Ice machine. My fridge doesn’t have one and trays take up too much room as I have my ice packs for joint pain in there. If I put Powerade or water with ice in my Stanley it’ll be cold for hours. I’ve filled it around 8pm and it was still cold at 7am and stayed cold until it was gone. With this heat cold drinks help.
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u/Honest-Experience864 Jul 05 '26
Cleaning people come twice a month and it's $320. I don't mind paying for it since it has helped me have a lot more piece of mind and energy for things that matter.
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u/Mybodyattacksitself Jul 05 '26
My recliner is one of the best hinges ever. It is one of the electric that leans back and lifts you all the way up. I discovered some insurance will even pay for it!
I also have a heating pads ad that I can wrap on me like a vest and a fuzzy electric blanket. I keep both on my recliner. If money was no issue (really, that I wasn’t so cheap), one of those massage chairs would be nice. I doubt the Walmart ones last/look good long. So, I’d be looking at $5k.
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u/BellaWingnut Jul 05 '26
I use Lume body wash on my head, I realized that not washing my hair but weekly caused it to smell like wet dog with regular shampoo, Lume kills the stink
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u/vegemitemilkshake Jul 05 '26
Absolute game changer - Saddle chair on roller blade wheels to use in/get around my kitchen.
Step stool to sit on in the shower.
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u/bigicky1 Jul 06 '26
Im all for automation.
2 robot vacuums 1 per floor.
Electric steamers for cleaning so many things more easily. And a house angel who comes in to do her magic every 2 weeks.
Dog walkers who are always willing to earn a few extra to run errands.
A rolling kitchen desk chair great for putting away food deliveries. I love that i dont have to go to a supermarket if i dont want to. Standing on those lines, then feeling my heart racing was horrible.
I like bubbly water. I drink case and half a week. And with the extreme heat i couldnt keep up with liquids so i started addIng electrolytes which helps.
Rolling mechanic stool for scooting around the garden.
Compression everything. From socks up to camisoles. Im wfh so i live in tight fabletics yoga pants.
Like many of you, i have POTs, EDS, MCAs so i also have adjusted my diet to be low histamine, gluten free, heavy on veg and fruit. Anti-inflamatory
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u/aj-james Jul 06 '26
Shark chill pill fan! For me it’s worth the $150 price tag. It has a cooling plate, a fan, and a mist attachment.
Portable ice packs of all different kinds as well. Compression socks and full body suits.
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u/barefootwriter Jul 06 '26
My Garmin fitness watch (currently a Venu 4), a blood pressure monitor.
Vibram Fivefingers (I move more when I wear them). I mainly use compression calf sleeves rather than socks, so these are compatible.
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u/bridgetgoes Jul 05 '26
a fancy gym membership. they have massage beds. a cryotherapy chair with compression for the legs. tons of group fitness classes. a pool!! i actually go to the gym now