u/Weary_Cup_1004

I am wondering what people wish existed if you could have a dream world for dealing with POTS. Or, tell me if these things DO exist??

Personally I wish there were online drop in support spaces for chronically ill people. Like a hangout spot where you can help each other brainstorm the same sorts of things we talk about here, but just with the added benefit of using video or voice (or even messaging i guess!) for a slightly more feeling of talking to real humans and being less alone.

I personally would want video and body doubling of some kind while i make all my stupid medical calls etc. Where someone who gets it could just sit w me while I do it!

I also wish there was a free service that would locate disability services in ones area. I just learned today that theres a way to sign up for a van service to my appointments in my area. It made me wonder if there are other programs or even places that give Lyft and Uber vouchers???

Im disabled and I dont think I can commit to or keep up the pace of regular group rides. I was wondering if there are any slower rides for families, beginners, or people with disabilities? I love cycling and need something that takes a route thats easy-ish to bail from. Like a tight, small loop so if you dont feel good its easy to go back because you arent 5 miles away from the starting point. Or a ride that has a shuttle or is near a train or something at one end so you go further but theres a ride back?

I also really want to to try recumbent bikes for my condition so a slow recombant trail ride would rule too, and maybe i could find a bike to rent. Any recommendations? ideas?

Do any of you fantasize about impossible but wonderful accessibility services lol ? I want to hear them if you have them. I am so bored and sick of being home and i am also stuck horizontal.

I want some big strong person who has bouncy happy energy. Like Shrek. Or The Hulk when not mad. To come over, carry me to a nice cafe or a park, and then carry me when i need to go back. They can use cars and subways etc as part of the journey too. 😂

Can someone make a POTS carrying service/ strength training program for gym bros/ gals/ nonbinaries? Its like a workout for them, and transportation for us? Win win? No weirdness around dehumanizing anyone? Good pay and benefits? Health insurance covers it for the POTS person and the carrying person gets health insurance?

Ok thanks

Where's somewhere it would be ok to sit for a few hours ordering snacks and mocktails in the evening while drawing ✍️? Some places are too crowded and it feels almost rude to take up space in that way, but others have more spacious patios and casual atmosphere where it doesnt matter what you do. Looking for that casual type of place, preferably South philly or center city?

Does anyone in this sub live in Philly and have any stories or experiences you can share about how you exist here? I have been almost completely house bound because no matter what mode of transportation I choose, there is so much walking involved, and some kind of grueling adrenelyn dump inducing aspect: traffic, near death experiences on bike, etc, lol.

I LOVE it here. So I am not open to being told to move haha.

I will describe what i do and what I have tried and what my barriers are. Wondering what other people do? And should we go yell at city council or something?

Happy to hear stories of navigating other big cities too!

Bike
This is by far my favorite mode. I got an ebike 2 years ago when i realized I cant handle my regular bike any more. I have a pedal assist, Specialized. I love it but its heavy. I have an elevator in my building but I still have to get it around corners.

Something also seems to happen when I arrive places. I bike like 10-15 mins, get in line at the place, and suddenly my watch is alerting and my HR is 155-160. Why?? It will be ok while biking, like not great but 110-130? Would it be better if I used my regular bike so im pumping my legs even more?

HR shooting to 160 when I get somewhere is making biking prohibitive. I end up needing to sit for at least an hour with legs up before I recover. And then Im wiped out again from the ride home. It just eats up the day.

E- Scooter
Just got a little e-scooter with a seat on Amazon. Not an official mobility device but the kind that is like the ones commuters zip around on. Just sitting. I put a wheelchair sticker on it, and i have been riding it slow on the sidewalk like a wheelchair basically. I will never go fast on it lol, the Philly sidewalks are too diabolically treacherous and i dont want to take it in the street either. I thought I could take this on the subway but then learned the elevators are broken / full of urine and feces :( and if I am carrying a bag and the scooter up and down stairs, i think it will just flare me like my eBike.

However, when I ride it around the neighborhood, my heartrate stays nice and in a good range, and I have a better overall day. ( i have tried it 2 times so far).

Can I take the scooter on the bus if it is a mobility aid? Do i take it to the wheelchair area? Is everyone going to yell at me lol? Can i scooter in stores? In coffee shops?

Walking
If I could just walk everywhere I think I like it better than biking. I like being so free from needing to lock anything up, or dealing with parking and helmets etc.Sometimes I can walk for a while. But right now, I have about 10 minutes or less before flaring.

Driving
I dont have an accessibility placard but considering it. Not sure how much it actually helps though? Would love to hear stories. Basically parking is anywhere from 1 - 6 blocks away from anything, or more depending. Circling to park seems to add to my commute time POTS countdown to flare stress. Sitting with my legs down has a time limit too. I am usually sitting in my car WAY longer than i sit on bike, scooter, and in some cases bus or train. So it seems to stress my body as much as any of the above.

Events in general
When event organizers say something is accessible they never think to include: is there access to water and a bathroom. In general. There are times that events happen outside in parks, or at pop up locations that I have NO idea what they are next to etc. So I dont go. I would LOVE if event people would say "This event is outside. There is/isnt shade. There is/isnt a place to sit. The closest water source and restroom is the coffee shop one block away." I know thats a lot of words haha, but like. Can we make a POTS map?

ETA: LINES AND STANDING
I have a Ta Da cane. It helps me to a degree in lines. Its not the best because my feet are still down. In the city theres a lot of times where you have to stand around and wait for things. And theres no where to sit, and no where to put feet up if you do sit. I think about wheelchairs but your legs are still below the waist? If i had one where my feet were up how I need them, I would take up soooo much space! Seems impossible to find the right thing? What are people doing?

Ok, I know this is long, but I would love to hear thoughts if anyone has time!

I just read the whole mega thread on wearables but none of the comments there seem to be discussing battery life.

I use Tachymon with an apple watch but I am so tired of how short the battery life is. Sometimes i cant even get through a day. I really need the alerts because i cant feel my tachycardia. But if i run Tachymon for hours, it kills the battery.

I had a garmin in the past but I switched to apple so i could use Tachymon, because i want it to alert me and I like the tracking. This was a few years ago and since tech changes, is there anything better now? I want to charge it once a week not once every day..

Does anyone know of compression clothing that works well for men? All the leggings, bodysuits, etc are for womens bodies. I was wondering even about mens dance leotards?

I have POTS and am female but my adult son sounds v POTS like but he also has GERD or something like I do (lucky him he got my genetics apparently) . I am finding shapewear body suits to be way more comfortable than high waisted leggings or wrapping a compression garment around my waist. Compression leggings and tights press too hard at the waistband and sometimes cause stomach aches for me.

He tried socks but they dont seem to do anything for him. He is also quite thin so not sure if that is part of why? He also might not have POTS but i felt that compression is a very low risk way to see if something can help with his symptoms.

Any men in here have compression experience? Ive seen shirts but are they enough? Thanks!

I just moved and need several household items, but the one that is annoying me most is trash cans. They are so expensive! I dont want to spend $17 for a plastic bathroom wastebasket. Does a $5 wastebasket exist?

I need 2 small ones and 1 kitchen sized.

Whats a cheap spot to get stuff like this? I need other things too like a toilet bowl scrubber. I would rather not get these secondhand for obvious reasons 😂

Thank you! 🙏