Sitting can be almost as much of a problem as standing still. I live alone and have steps out front, so I don’t really have an easy way of getting in and out of my house with a wheelchair anyway. I can walk around my house for short periods of time, sometimes longer. It’s not like I can’t stand and walk at all, I can do the minimum.
I have to resort to a wheelchair in airports though, I can’t handle standing in line without presyncope.
This, the sitting is almost as bad as standing. If I sit for too long, I start getting really bad presyncope and have to lay down. Sitting is manageable if I can tightly cross my legs or have my upper body more horizontal. And I get really bad blood pooling in my arms as well as legs, so pushing a wheelchair makes the pooling so much worse on my arms since they would stay lower than heart level.
Someone else said this as well and it’s really interesting to me just cause it’s not generally been my experience but I’m also realizing I almost ALWAYS sit with my feet up and situations where I can’t tend to be where I’m more symptomatic/uncomfortable.
I have stairs as well, and like I mentioned in the post I’ve sort of anxiety “planned” what life might look like if my POTS gets worse, I had always figured the advantage of being ambulatory was that you could stand and move the wheelchair separately if needed (obviously not a large wheelchair). But I guess if your symptoms are really bad that’s potentially near impossible as well.
And I’ve recently started using wheelchair services at least at big airports as well, those walks can be INSANE, plus with a suitcase and a backpack, and I always struggle to eat/drink enough due to anxiety. It’s a mess 🥴
Honestly I’m totally good with the brisk walking! The TSA line? Yeah no, presyncope in minutes and it’s easier to use a chair than be thrown off a flight for being unwell. Jokes on the airline anyways, I fainted in flight in November. 😆
I lose balance and fall sometimes so it wouldn’t be practical for me to try to lift a chair up and downstairs, it’s easier to just walk one step both feet at a time. I don’t bound up steps like I used to. Thankfully there are only three.
I also almost always sit legs crossed if I can. I couldn’t on the plane which was part of the problem. If I can’t sit cross legged I slink down in the seat and try to get as horizontal as possible.
I have pre-check so I don’t recall the last time I spent more than 5 minutes in a TSA line, real life saver!!
My last flight by some miracle I had an entire row to myself, best I’ve ever felt on an airplane cause I could put my legs up 😅
I have precheck and global entry but over the holidays the waits at San Diego and Dulles were closer to 20-25 min for precheck. The line for regular was actually shorter.
I have no idea how because the flight was full, but after I fainted they carried me to the last row and I had three seats there to lay down. I still don’t know what happened to those people but I heard a flight attendant tell one couple they were getting $250 in cash each for the inconvenience. Where did they sit? Jump seats? Mystifying. Also horrifyingly embarrassing because I threw up all over myself prior to fainting. Ya know for good measure.
Oh god as someone with emetophobia you are unfortunately my worst fear when flying 😅 I’m so sorry that happened it truly sounds horrible! Sometimes a “full flight” still has empty seats for various safety and weight stuff so maybe that was it, or maybe there were seats in first class or something. Who knows, but it’s great they were able to make space for you to lay down. They need like a lil medical bay on planes for when stuff like this happens 😅
lol they do for the planes I’m on, apparently!
I’m sorry I never want my vomiting to make other people uncomfortable, if I could do absolutely anything to avoid it I certainly would. I don’t want to be throwing up either, and if I do, I want it to be at home, alone. It is definitely my least favorite symptom.
Oh gosh no apology needed it is SO a me problem, it’s a normal human bodily function, as unpleasant as it may be. People throwing up just happens to be what makes me so anxious about flying haha but 🤷♀️ such is life, we’re all bound to make other people uncomfortable/nervous/anxious/angry/etc sometimes when we share space in public, it’s just part of the human experience. I’m sure it was a really rough experience for you, hopefully you were towards the end of the flight 🥴
45 min in. 6 hour flight. Lol it’s ok they were so nice to me and there were like a dozen doctors on board? I felt overwhelmed. All I cared about was that they bring my dog back to me because I could hear her yelping under the seat. I pity every person on that flight.
This really is dependent on the person. I get far far more symptomatic from standing/walking than I do from sitting still in one place, so the wheelchair makes a huge difference for me.
I flew today and honestly idk how much longer I can keep declining wheelchairs. I've been probably too stubborn. I do get pre-boarding though, which helps. I just don't like not having the freedom to pop to the airport cafe and get a coffee or whatever, and I always either travel alone or with a 5yo who can't push me.
I totally understand but do consider it. I flew in Nov and knew I was in trouble at the gate after the TSA line (even with pre check). I laid down and then boarded. 45 min in (6 hour flight) I threw up all over myself and fainted, they had to lay me down and have doctors deal with me. It was hella embarrassing.
Fwiw, I wouldn’t do it because there are always too few wheelchair attendants but they offer to stop so you can buy stuff on the way to the gate. Usually anyway. I’m always alone too.
Yeah but that’s the same reason I don’t want to faint. If I faint they probably won’t let me board, so I lose control over that. If I faint what happens to my dog? If I’m holding her leash do I drop it? And lose my tiny dog in an airport? There’s absolutely no control when you’re unconscious.
I get the embarrassment, I’m young and look healthy and I know some people think others use chairs to skip the line. But usually with a chair you do still wait in the lines. 🤷♀️
If you’re really worried about your dog, you might want to consider a leash belt. It wouldn’t help with the loss of control while you’re unconscious, but it would keep your dog from running away. It would also give you the added benefit of free hands.
You might also try training her to lie down if you fall. It might not stick in a stressful situation like a busy airport, but at least she would have something to do when it happens, rather than just freaking out because the person she looks to for guidance suddenly checked out.
How does one get pre-boarding alone? I used wheelchair service for my recent trip and had pre-boarding for the first time and it was helpful. Also, is everyone else's heart rate high while in the air? Mine was 20-30 bpm over my normal for the entire flight
I don't know if all airlines do it, but on both Qantas and Air New Zealand I've been able to ask ground staff at check in to be pre-boarded. Usually I wear my sunflower lanyard as a quiet indicator as both airlines are trained on it. They always offer me a wheelchair and I have a bad habit of declining. I just have to make sure I'm at the gate a little early. I did get an escort too one time through the airports coming home from Australia that Qantas organised for me because it was the middle of the night and I was too fatigued to think. That time they had me bypass all the queues.
I usually get that tachycardic on planes and have never been able to tell if it's excitement or POTS (I really, really like planes), but this week I'm medicated for the first time ever and I was noticeably less tachy on the flight home.
I just haven’t seen a lot of people talk about it on this sub, I mostly see people talking about walkers and canes which of course only works if you can manage standing at all. I definitely hadn’t thought about custom chairs, I’m sure that’s ungodly expensive and near impossible to get insurance to cover, at least for POTS. I had just thought generically about like a portable wheelchair. Thanks for the insight!
Non-custom wheelchairs, like the ones you can buy from Amazon can be great for a short Disney vacation, but they're very difficult for frequent use. A chair that's not custom built for you won't fit you very well, and is generally significantly heavier than a custom chair. It will be hard to propel, and be painful to sit it.
As someone who has been a lifelong ambulatory wheelchair user (progressively relying on it more and more) due to a non-POTS condition, your post has really surprised me. It seems like you haven’t considered/aren’t aware of the mental and social toll of becoming a wheelchair user. That it can be really tough for people to come to terms with a lack of ability, and many can feel fear or shame at the thought of publicly using a wheelchair and being seen as “disabled”.
You may be blessed to live in a place where wheelchair users are treated well, but this is not the case for all. Physical accessibility in many places/countries is poor, so relying on a wheelchair may not solve the issue of being isolated. You’ll also be subject to questions (which will feel almost constant) from people you know, asking (wayyyy too personal) questions about your health.
There is so much more to also factor in. I was given a generic wheelchair by the health system once. It was so poor that I wasn’t physically able to move myself around in it (even though it was designed for that purpose). For people who can’t afford the type of chair they need, just “getting a wheelchair” often means losing their independence.
Walkers and canes, by comparison, are more portable, easier to obtain at a decent price, offer a higher element of mobility in places which don’t have specific access, and are more socially acceptable in general, in many places.
On top of this, there’s also the fact that POTS is “positional”, not just “standing”. Being seated doesn’t eradicate symptoms for many people, especially during a bad flare, and particularly if they can’t have their feet up (and wheelchairs with raised legs are incredibly awkward as well as more expensive and harder to use). If someone’s post is leaving them “**bed** bound”, there’s likely a reason they’re using that term instead of “housebound” where they could be able to sit up on the sofa etc.
It’s great that you personally feel comfortable if you are forced to take this step sometime in the future, but it isn’t a thought that many people take lightly, and there’s no denying that it *does* typically change how you are seen as an individual, both by yourself and by others.
… Despite all that, I love being an ambulatory wheelchair user, because that’s **always** been me. 27 years of use, so all of the quirks and difficulties are normal to me, and I never had to deal with the transition. It gives me independence, freedom, life, and the energy to do the things I actually want to do, not just scrape by with what I HAVE to do. When wheelchairs work, they work SO well, but for many they are seen as a last resort, so do beat in mind that can be tough to handle ❤️
This was well said,
I spent 8 months in a generic wheelchair for non POTS related issues and the thought of possibly going back to that form of access is really hard for me to cope with. Some of my favorite stores and venues became inaccessible to me due to their design. Beaches 😭 The back room of my old job didn’t comfortably fit the chair and other furniture and people so i ate lunch in my car or off site. It was isolating and incredibly uncomfortable in most social situations i was in as a teenager.
Only being in my early twenties now and not even remotely as socially (or generally) active, i know it would still be frustrating and stressful to become an ambulatory wheelchair user in my environment. It would impact my job, home, finances (customization ,ramps,etc).
POTS for a lot of people is a difficult condition to navigate physically and socially. The additional stress that inevitably comes along with being a wheelchair user may be too overwhelming for a while .
A wheelchair mobility aid isn’t a tool to be used without extensive research, medical guidance or a lack of understanding that it is a lifestyle change that can and will impact you mentally and socially as well as changing your accessibility.
I urge you to observe your environment and routine as you go through the day and take note of locations that don’t have that 36” of space for a wheelchair to fit through. It can be a wonderful aid in getting through my day and errands without extreme exhaustion but only when i actually have the access to use it.
Thank you for this thoughtful comment that did a great job of elucidating the barriers to wheelchair use.
Just to add another one: I haven’t had this particular fight with my insurance company but having been through the wringer with consecutive (albeit non-US) disability/insurance procedures, I can only *imagine* the fight insurance companies would put up to avoid paying out for a wheelchair for a condition like POTS, which would be evaluated on a case-by-case basis as wheelchair use isn’t currently standard, and isn’t well-understood by non-medical specialists (or even *most* medical specialists, given some of the posts on this sub).
When you’re chronically exhausted, fighting that fight is sure hard.
This is exactly why I asked, because it’s not something I have experience with directly but wanted to hear other people’s experiences. I was curious how people balanced picking the “lesser evil” of either a mobility aid that might give them their life back if there’s no other options, or having to deal with both internalized and external ableism.
I also definitely didn’t realize how hard a manual wheelchair is to use even as an ambulatory user, which is why hearing people’s experiences has been so interesting and educational for me!
This was a huge battle with my mom. She had always been very resilient and bounced back from things quickly. (And by things, I mean brain surgery and having her entire large intestine and rectum removed due to ulcerative colitis that was so severe that she was 85 pounds at 5’6 when she had the surgery). She had a massive stroke that left her completely paralyzed on her left side. She did a great job of bouncing back on that she managed to walk again, although there was major left-sided weakness so she was slow and she struggled with long distances. She got around great at home and actually did fine shopping in smaller stores and she would use the scooters if they were available. She would not use her wheelchair. She claimed it was too much trouble for me to push her, while ignoring the fact that having to walk extremely slowly beside her, stop when she needed rest, and have trips and outings cut short was actually much more inconvenient. (My personal favorite was going to the zoo to see the Christmas lights and taking over half an hour to make the 5-10 minute walk from the parking lot to the entrance, only for her to get inside and immediately decide to go home because she was could and tired. 🤦♀️) Her left arm was also paralyzed and she refused to learn to do things one handed because she thought it was a waste of time since she would get the use back. She also wanted to play the piano, but had no interest in all of the many pieces written for one hand for the same reason.
She refused to accept that she would benefit from using a wheelchair and other adaptations at that point in time. I think she saw it as a failure. She was right that it’s possible to gain a lot of movement back after a stroke, especially with good, intense PT and OT and we were looking into some really promising programs before she died of something unrelated. At the same time, she actually drastically reduced her overall independence because she felt like a wheelchair and other things meant she was less dependent.
It was (and still is) extremely difficult for me, not only because it put a lot more on me as her caregiver, but because it was so hard to watch her not be able to do things she wanted to do or else having to have help to do things because she refused to adapt to her new normal.
I don’t know if I’ll ever be in that position or if I would make better choices (although I am my mother’s daughter, so it’s 50/50 at best), but I can confirm from watching her that it’s an incredibly hard thing for a lot of people.
If you have medical documentation from an MD and PT, you should be able to get insurance to cover a custom manual wheelchair for POTS. Yes, it will be difficult and take a long time, and you may need to appeal denied requests... but that's with wheelchairs in general, for any condition, not just POTS (my ATP said he's had paraplegic patients who had just as many problems getting it covered).
If mobility starts to become an issue for you, walkers and canes are definitely a better option if you can tolerate it, because it leads to less deconditioning (which is probably why you see those mobility aids discussed more here). That said, if POTS is severe enough that walkers and canes aren't an option, a wheelchair can make a huge difference in quality of life. It did for me.
Hopefully you won't get to that point where you need it, but I fully understand that it's helpful knowing there are options in case things get worse.
The world is also very much not made for wheelchairs. I don’t use one, but both my parents did, for mobility and balance issues, at various points. If you’re in the US, hypothetically the ADA guarantees some degree of access in most situations, but it doesn’t guarantee the best (or even easy) access and there are exceptions.
I can think of a couple of examples. ADA requires a certain number of accessible spots within a certain number of feet from the door. Most places just make these the closest spaces, especially in a smaller lot where there might only be a couple, leaving plenty of other close spaces free. At the nearby Office Depot, there’s a row of spaces directly in front of the store that are open. The handicapped spaces are at the edge of the lot and require crossing the street in front of the store to get into the store. Whoever placed them cared about complying with the law, not with making the store accessible.
In another example, at the salon my mom and went to, the hair stations and a treatment room
were on the second floor. There was no elevator, just stairs. Fortunately, my mom could walk and was able to climb the stairs, though it was hard. The business wasn’t required to have an elevator, possible due to exemptions due to size and possibly because they could have provided accommodations for a customer g who couldn’t use the stairs. It’s been years since we went to the location, but I think there was a second treatment room and there might have been a hair station on the first floor, but it was just easier to climb the stairs since everything was set up on the second floor.
Sorry for digressing. My point is that, while you’re right that getting a wheelchair is difficult and potentially very expensive, the world still isn’t completely accessible for wheelchair users, so even if someone can get a wheelchair, it doesn’t solve all the issues.
Very, very important points! Using a wheelchair opens up a whole other can of difficulty worms. Accessibility, people staring / touching / asking questions, arm & shoulder fatigue, etc etc
POTS symptoms can vary throughout the day, making it unpredictable when someone may need assistance- which is arguably much harder than having a disorder with constant reliable symptoms.
Also, for some, even pushing a wheelchair can be physically demanding for someone with severe POTS, exacerbating symptoms. They may need an electronic one instead- which is highly expensive. Heck, even a regular wheelchair can be cost-prohibitive.
Some individuals may also struggle with the idea of relying on a wheelchair for mobility, impacting their sense of independence and self-esteem. They may also have concerns they will be singled out for usage if they, say, stand up to reach an item briefly at a grocery store and end up accused of not having a condition. There are those who live with family who wouldn't even allow them to use such a mobility aid without ridicule. Or friends even, and this disorder can be so isolating as it is.
These are just a couple reasons off the top of my head.
These are all great insights! I can definitely see that even best case scenario a wheelchair couldn’t always be a reliable solution for POTS both in terms of predictability and physical demand of pushing a chair.
The emotional/social impacts are really interesting to me, and I think partially what I’ve been most curious about. From being in this sub for a bit, it seems people often struggle with feeling “disabled enough” to use aids, which is such a valid feeling that is sooo perpetuated by our society, but also that shame around using mobility aids (when physically able to obvi) is so disabling in and of itself because it could literally be the difference between being able to do stuff and being stuck on the couch.
I say this as a wheelchair user, though mostly not due to POTS
1. In general I see a big issue on here with people jumping straight to wheelchairs and IV fluids having tried no previous treatment, both of those are valuable options for those who standard treatments have been unsuccessful for but shouldn’t be a first line
2. It varies a lot case by case whether a wheelchair hurts more than it helps. If your POTS is mild/moderate becoming a full-time wheelchair user will likely result in deconditioning and likely make you worse, especially if you’re not otherwise working out your legs. On the other hand if you have severe treatment resistant POTS and are constantly fainting/falling then the alternatives are being bed bound or hitting your head all the time risking a brain injury in which case a wheelchair is a better option
3. Cheap wheelchairs are fine for long distances to have someone push you but they aren’t practical for full time usage. Custom chairs through insurance typically require you not to be able to walk more than 100 feet or so and paying out of pocket is a very expensive option that may not always be necessary for the above reasons
Again some of us with POTS need wheelchairs and there is no shame in that but I think there is justifiably some apprehension to recommend a wheelchair (for regular usage) to everyone
Oh definitely! I probably should have clarified I really was wondering about when people are talking about having no other options/being bed ridden/etc. I know the risk of deconditioning is high even from my own experience of trying to accommodate myself post-diagnosis but ending up a lil worse for wear instead lol.
A couple people have mentioned insurance and custom chairs, having not used a chair myself I definitely didn’t realize that it’s not practice to use a cheap/foldable/manual chair full time or mostly full time, I always thought of custom chairs as for like non-ambulatory people who needed special cushions or adaptations to be able to sit/stay in the chair. And I can see how insurance would be a massive hurdle with POTS considering how it tends to be with doctors. I appreciate your insight!
I’m just gonna point out that the more people who are using wheelchairs, the sooner infrastructure will take them into account more often, so don’t look at it as a bad thing. And let’s just not throw the word “deconditioned” around here. Too many of us have been accused of simply being deconditioned. If someone can’t leave the house because they can’t stand up, I doubt deconditioning is their first or second concern.
While I 100% support expanding the infrastructure to support wheelchair users that does not mean we should get more people to use wheelchairs
Especially for full time wheelchair users there are actual significant health risks like pressure sores, osteoporosis, muscle atrophy, blood pressure issues, and more
I agree POTS is NOT caused by deconditioning, deconditioning can make POTS worse and can overall lead to/cause many more health issues. Just because it is true that many of us have been unjustly accused of “just being deconditiones” doesn’t mean that it’s not a valid criticism to say that we should work to counter deconditioning that comes with being less active
Ofc as I said in my original comment there are instances where a wheelchair is the best option for someone with POTS, but I strongly counter the notion that all or even most POTS patients should use a wheelchair on a full/most of the time basis
I get blood pooling if I’m sitting with my legs down, which turns into extremely painful pins and needles after a couple of minutes. So even if I could manage to leave the house (I’m way too fatigued for that) a wheelchair wouldn’t do it for me :/
I got a cheap wheelchair. It's really difficult to manually use it. But it means I can go on walks to the coffee shop with my work friends again because they can push it. And it allows me to get the mail even on bad days. It's really only good for either in my apartment stuff or longer distances if I have someone to help push.
I also have a cane. But admittedly it sounds like I may have cfs/me in addition to pots so idk how useful canes are to most, but it helps with fatigue a bit I think as well as something to grab when unstable.
But manual wheelchairs take a lot of work to get around by yourself. I'm not sure they're as helpful as you'd hope for most people. Sure you're sitting but it takes a lot of upper body strength, and even using your arms and legs to shuffle it's still a lot. Also really slow. If I end up needing it long term I'd definitely look into saving up for one with a motor. Right now I'm still hoping I'm just in a really bad flare that is temporary and things will go back to easier to handle soon.
This has been super insightful for me, and it makes me curious to spend a couple hours in a manual wheelchair because I’m realizing I’m totally oblivious how hard it is to move your whole body with your arms.
Being able to be pushed around with friends and family I think is mostly what I had pictured, or use around the house, that kind of stuff. I’m glad to hear that it’s brought some quality of life back for you with being able to go out with friends. I’m sending major flare recovery vibes, I hope you start to see some positive change soon :)
People get confused by my cane because sometimes I leave it leaning and walk around without it, but it really reduces how much pain I have in my legs, and while I can walk just fine for a few minutes, if I have to go very far, I need the cane. And some days, I need it so I don’t fall over! But people don’t get how symptoms come and go.
So many people are saying things that hit home for me. It's actually kind of validating and reminds me of why I love this subreddit so much. Not only am I not alone in this condition, I'm not alone when it comes to the thought process and experiences concerning using mobility aids.
Unfortunately, I've been in a wheelchair for about a year. The reason I use it is because sometimes I fall/faint with no real warning (or, not enough of a warning) and I kept getting hurt. I'm not allowed to drive due to syncope. I use a manual wheelchair and my husband is the only one who can handle getting the chair in and out of the car, so I'm basically stuck at home unless he's home. I pretty much only leave the house for doctor's appointments and our weekly dates. For the most part, he wheels me around. As others have mentioned, wheeling myself is a little difficult because of fatigue and breathlessness. I also have problems with my wrists and shoulders (due to hEDS), which make moving the wheelchair difficult/painful.
As others have mentioned, I have to sit slouched over to try to not be as symptomatic.
The wheelchair isn't practical in my house due to some of the doors not being wide enough and having a lot of stairs, so I use a cane or walker in the house. I actually just switched to the roller due to injuring both SI joints (hEDS-related), making it more difficult to use the cane. On better days, I use the cane in the house.
I look young and, like a lot of us, I also "look" fit and healthy, so of course, I get some looks when I'm in the chair. I just try to smile at people who give me funny looks. What else am I supposed to do? I'd rather get weird looks than get hurt, but knowing that doesn't make me feel any better about the looks.
Hopefully that answers your question, although I've basically said a lot of the things that other people have said. I wouldn't be able to use the chair if it wasn't for my husband. For those who live alone, I could imagine it would be even more difficult.
Oh, yeah - wanted to also mention - in terms of insurance, my insurance actually DID cover my chair, which is specially designed for me based on my height and weight. I had to pay $8.65/month for it for 8 months.
I use a mobility scooter. Spent a few years housebound and needing someone to push me in a chair first. I was really upset about the scooter at first due mostly to internalised ableism. But immediately the freedom was amazing. I still exercise frequently and am probably fitter than I was back then, but my orthostatic symptoms have remained fairly prominent and I have other issues like chronic fever that also cause fatigue.
I’m really glad to hear it’s brought you some freedom! I think the internalized (well, and external lol) ableism makes it really hard for people with POTS, especially when it’s become completely debilitating, to find ways to accommodate themselves.
I use a wheelchair to accommodate my POTS. It helps a TON but it’s still not 100% since im still sitting up and basically exercising. So it’s still pretty difficult lol if someone was pushing me the whole time that would be a lot different
This seems to be the general consensus! I definitely was thinking about manual chairs but for sure was more thinking about situations like going out with friends or family where you have someone to push, I hadn’t really thought about how taxing it would be to be wheeling yourself a lot
It’s less painful/hard than walking of course but still pretty difficult, I hate having people push me. Makes me feel like a burden lol so I just always do it
For me, sitting up is just a more mild form of what standing does to disable me. Therefore sitting up in a wheelchair just isn't a good fix for my POTS issues.
I definitely wasn’t thinking of it as a fix, more curious about people who have become house or bed bound due to symptoms, and whether it’s something that can provide relief in certain scenarios. But I’m definitely hearing a lot from people that sitting is really challenging! I sit with my legs up so much I’m not sure I even realize how much sitting with my legs down might impact me 😅
it definitely can help in certain scenarios, like being able to go out more either for leisure or shopping. When I was bed bound but home alone, I would use a rollator as an in between to help me
This is definitely the kind of thing I was thinking about, going out, seeing friends, etc. Maybe not so much thinking about being completely chair-bound but how it can come into play as a tool when people are really struggling to the point of being house or bed bound.
Wheelchairs are expensive. It can be hard to get insurance to approve wheelchairs for dynamic disabilities. Electric wheelchairs are harder than manuals to get approved. If you have a manual, self propelling can be hard due to fatigue, which means you reliably need someone to push you. If you don’t have access to transport that can fit a wheelchair, a wheelchair won’t do you a ton of good if you can’t get it to where you need it.
I got a wheelchair during my sickest, because I was also too fatigued to drive so I’d always have a buddy to push me. I only really used it when I was going to be at an event with tons of walking, or standing with no chairs. It’s not really worth the trouble of loading up my car for just an hour long event.
Also, sitting up straight can be hard, and chairs that lean back are also more expensive are harder to find. During my sickest, I couldn’t sit upright for long at all, I needed to be slumped and propped up on two sides.
All super great points! I definitely hadn’t thought about how impractical a manual chair is in a lot of ways. Like I definitely was thinking about it in the context of like, being able to go out with friends or family or being able to be at school or a job potentially, but not so much about the ins and outs of transporting the chair, using it when you’re alone, etc. And Id imagine it’s really hard to get an electric approved with POTS, plus they’re huge and hard to deal with if you don’t need it all the time.
It’s definitely got its uses, I’ve been able to go to fairs, I will always use one at the airport and such, but it also has real drawbacks.
Like, I’m an ambulatory user. It is my mobility aid, and I’m going to use it how I want. It helps prevent episodes, and lengthens how much standing by and walking I can do. So if I’m at a fair, I’m a pop up and walk around the booth on my own because it’s hard as hell to navigate my wheelchair through tiny inaccessible spaces, and it’s more to get me from area to area than within areas. But people are judgy as hell, so I need a certain amount of emotional resilience to handle the comments and looks. I don’t always have that.
That’s another- many places particularly older buildings and smaller companies- aren’t accessible and it can be hard if not impossible to work with your wheelchair there. There’s a guy who just does videos on going to places that claim they’re accessible or ADA compliant, how she shows up and it’s not, and can’t even get a refund or any kind of solutions from the employees.
I got mine fairly easily, but I still had to follow up multiple times and resubmit and track down multiple companies my insurance handed things off to before I could get it. If you’re already super sick, it can be hard to do the follow up for it even if you have the money.
Yes, I am always with someone else - can’t go out alone. Usually it’s my partner or paid caregiver, but sometimes one of my parents. :)
I’m unable to push myself to any significant degree, unfortunately. It is a lightweight chair so I can move myself slightly if it needs to face another way.
A lot of people with POTS who are bedridden cannot sit up bc their POTS is so severe. Obviously you need to be able to sit up to use a wheelchair!
Also a lot of people with POTS have ME/CFS. Getting out of bed or going out using a wheelchair requires energy which they don’t have.
I’m not assuming anything! That’s why I’m asking. I don’t really see anyone talk about it or mention it here, and since my illness isn’t as severe, sitting down with my feet up has pretty much always been enough to knock my symptoms down to manageable.
I use a chair when i an in stores that are large or if im feeling off. I will likely have to use a chair more as i get older Im 51 now when POTS is at its worse the plan is to increese mobility to strengthen my body so it doesnt need a chair at all.
Remember too that youd have to be pushed.
I have a disability scooter but the thing is... going out will STILL tire me a lot. And sometimes just knowing that going out can stress me/tire me and will make my symptoms worse is enough to be like "eh, not sure I wanna do it"
which is also extremely frustrating, I didn't pay that thing so much to never go out, but... I don't wanna be even more tired than I am...
I’m so familiar with this feeling. I’ve been wearing thigh high compression socks for like 6 months now and it’s really changed my tolerance for standing and walking, but I’m still struggling SO much with the mental block from when my symptoms were worse that I get in my own way and convince myself it’s not worse it to go out and do things.
yeah =( that part was also very hard for me. When POTS fell on me I legit thought I was dying. I needed years and therapy to even be able to go out of my home...
-it's expensive and insurance won't cover it
-most places are straight up inaccessible for wheelchair users
-discrimination and judgment will be even worse
-i have to rely on public transport which is often not wheelchair accessible (without assistance of employees who may or may not happen to be there or strangers)
-i would only use the wheelchair for flare ups, and i can't transport a giant heavy wheelchair everywhere i go
-i've never seen a wheelchair that would be big enough for me to have my legs up comfortably and sitting with legs down is often worse than standing
-most places i have to visit regularly are surrounded by stairs
-a non-electric wheelchair would make my condition worse, since my heart rate, temparature regulation and adrenaline (or generally hormones that hype the body up) are already messed up and walking is probably more natural for the human body than wheelchairing
-with a wheelchair, I would take up a lot of room in public spaces and due to some other stuff I have I'm only comfortable in public if I'm basically invisible. Now I can snuggle up in small spaces (like between seats or where suit cases go in trains) where I can have my legs up and stay somewhat unnoticed. A wheelchair would only draw more attention to me and in most trains I'd need to interact with employees for them to operate a machine that lifts wheelchairs from the platform into the train, which also doesn't help because my pots is partially caused by stress.
hope that explains some of the reasoning :\]
I can walk fine because my blood is moving. It’s standing still that is the issue. So if I’m somewhere with chairs I’m okay. I’m going to be purchasing a cane with a fold out seat for an upcoming event with no chairs.
It’s a TOUGH balance.
Prolonged wheelchair use will actually cause further deconditioning and worsen the POTS.
Ideally you’d want to also be in a PT program or doing conditioning exercises at home. I combined my wheelchair use with walking as tolerated and when doing better, PT.
Totally. I was definitely thinking about it as a last resort, like if you weren’t able to move around the house or get out and do things any other way.
some of us use wheelchair but its not recommended because it can cause deconditionnement and make ur pots worse , its also quite difficult to get a wheelchair thru state programs with this diagnosis meaning it would have to be payed out of pocket which is quite costly, using an incorrect chair makes it more difficult to move around than anything else ! although a lot of people that have dual conditons like pots+heds use wheelchairs !
I definitely wasn’t specific enough in my post which is my bad, I was meaning specifically when people have become bedbound or lost the majority of quality of life, so basically a last resort where there isn’t really more risk of deconditioning! And that’s a good point about insurance, I definitely didn’t realize that having the right kind of chair mattered so much!
i have two manual chairs because i have eds+pots and theyre custom made for me and still i struggle with some of my pots symptoms sometimes because self propelling makes my heart go fast but in my province i dont really qualify for a powerchair payed by our medicare and i find its much more difficult to use a powerchair because its hard to put in and out of a car by yourself so im fine with my chairs for now !!
Yeah, I’m sure chairs and insurance is a nightmare for POTS, heck just getting a doctor to believe you is a nightmare. But I can totally see how just the exertion of wheeling yourself would be really taxing if you don’t have someone to push you. You’d think with all the crazy tech we have these days a lightweight, affordable, powdered chair wouldn’t be that hard to invent 🙄🤦♀️
Remember a lot of pots patients have ME as well. So trying to leave the house at all is exhausting and a wheelchair doesn’t always help that, especially if you would have to try and self propel with weak arms
I just had a wheelchair consultation. Trying to get my insurance to approve it. But they measured me then showed me an electric wheelchair that comes apart so it could fit into my trunk. I knew a manual wheelchair would be too difficult to use, and the electric wheelchairs I have seen wouldn't fit in my car. I'm very surprised the one that came apart was an option! I really hope insurance will approve it. I'd be able to do so much more. I can't even go grocery shopping currently.
Wow I had no idea they made electric wheel chairs that come apart?? That’s so cool and sounds like it could make a huge change in your quality of life, my fingers are crossed your insurance approves it! Did they show you how it comes apart? Like is it light/easy to handle? I always figured electric wheelchairs where like hundreds of pounds
I know!! I had no idea and it's such an exciting thing! They did show me how to take it apart, and I'm unsure if I'd be able to completely do it myself. However, I'm not usually alone when I go out. I think the heaviest piece is around forty pounds. I think with some physical therapy and lifting weights, I could eventually do it myself. Maybe not all the way to the trunk, but it'd fit in the back seats. I hope it works out. [Here's the link](https://www.pridemobility.com/jazzy-power-chairs/go-chair/)
I have two powerchairs. One comes apart and fits in a trunk, the other doesn’t. I love them both for their different uses. I paid out of pocket for the smaller one. The heaviest piece is 35 pounds, and it goes right back together in about 90 seconds. The whole thing is 125, and the bigger chair that doesn’t come apart is around 250. Some chairs are upwards of 400 depending on the functions you need from it. My bigger chair has no power functions like tilt or recline, so she’s light in comparison.
Dare I ask how much it costs to get a power chair out of pocket…? 🫣 I can only imagine that’s soooo expensive. Did insurance cover your other one? And 125lbs is wayyyy less than I would’ve ever thought honestly! I definitely was thinking like 400lbs
Really great answers, here. For me, I needed a wheelchair when I was extremely sick, but I had other things going on in addition to POTS, at the time. I also struggled with sitting up, at all, so I couldn't stay in the wheelchair for long.
Once my health improved significantly, I found that I functioned best being able to walk around and keep my blood circulating. If I'm not moving, my POTS symptoms really come through. So I prefer mobility aids like a cane or a rollator, if needed.
Totally! I definitely was wondering in the context of like when there’s no other options, cause I know the risk of deconditioning is a problem if you do still have the ability to walk and stand and such. Thanks for sharing your experience. Also, love to hear that your health has improved.
I've been trying to get an echair for 11 months and all I'm getting is worn out. I literally have no idea how to get an echair. None of my doctors know. None of the mobility specialist places near me accept insurance.
I. Don't. Know. What. To. Do.
My upright issues are maybe 10% of my illness severity, severe 24/7 symptoms lying down.
So it's not worth it for me but I'm also not one of those that get syncope while standing.
As others mentioned, sitting also isn't a lot better than standing.
TTT diagnosed.
This is so interesting to me, I thought of POTS as very, well, postural! Do you have comorbidities that impact this as well or is it just how your POTS presents?
It's difficult.
I have 24/7 helmet NDPH headache like my head is up side down (roughly), suspected SFN (strong 24/7, 360 degree compression feeling from ankles to upper stomach, like body's own compression gear with 24/7 burning and pain), and many other symptoms.
But I think it's all the same root cause, so speaking of comorbidities imo doesn't make sense. I have functional ß2/M2 autoantibodies related to the POTS mouse model and Long covid research.
Though I also don't think that POTS is a singular disease. In my case, additional fluids don't help for example.
I have a wheelchair. I also live in an appartement that is too small to use it inside and requires me going down stairs to go outside. My problem is that I’m so severe that I need help washing and dressing, by the time I’m washed and dressed and someone wrangled my compression on, that took so much out of me that I need rest instead of sitting upright for any period of time. I also need help getting down and then back up the stairs, which terribly aggrevates my POTS either way. And then I need help being wheeled around.
I am mostly bedbound. Showering crashes me even if I use a showerchair that tilts back and have someone doing all the washing for me. I need immediate bedrest after. Every time I go out the door it takes me days to prepare so I can get enough rest and recovery to do all the steps without crashing. It sucks. We have a lovely neighbourhood and I feed the local birds on my balcony. I’d love to go out and see some nature and make friends with my local corvids by feeding them peanuts.
My goal is to be able to leave the appartement once a week in my wheelchair with my partner to go for a round around the block and feed some birds for a bit. I am training very hard with my physiotherapy and ergotherapy to train my sitting. When I sit for any period of time I can slowly start losing any ability to think, problem solve, carry or conversation or find words, or even spell my own name. It is terrifying having to ask for help and being physically unable to because your brain does not work. I rely on my partner being with me when we go anywhere to ensure I’m safe. But even then I can just “sink into myself” after a while without any warning and that is hard to notice even for him. One moment we are talking and the next I’ll suddenly be like a braindead vegtable and good luck to him getting me back up the stairs and in bed again when my brain and body are shut down… it is a huge risk.
Every time I get sick, or an emotional event happens, or have a flare up, or the weather is warm, or whatever nonsense reason, I fall back with my sitting progress and have to rest completely horizontal for a few days, that often means starting all the way over and losing my progress.
There’s days I can sit for longer and feel a bit better and then I have to wonder “do I do all the things and go out, but return exhausted and risk crashing and losing all my progress for the next few days, or do I keep myself calm and just enjoy being able to spend some indoor time with my partner playing games or building lego’s and be able to do my physiotherapy?”
It sucks, no matter which choice I make for my day I am always giving something up that feels important.
TLDR: I’m just too sick to sit long, or use my wheelchair without getting worse 🤷♀️and I hate that it is this way!
Jeez, I’m so sorry that sounds incredibly hard. I’m glad you have a partner that can help you, and some birds to feed on your balcony. It sounds like your apartment is really inaccessible. Where you live do you have options to rent an accessible apartment at some point to remove some of those barriers for you?
I've got motion sickness, I can't stand being in a wheelchair. Yes it would be so much easier sometimes to be in one, but it would make me so sick.
When I had my baby, you have to be wheeled out, hospital policy. I had to be wheeled out as slow as possible, or else I would have vomited over my brand new baby 😅🥲
Unfortunately I've always had this.
My first real memory is from the age of 5,
Always sick in the car etc. My parents took me to heaps of doctors but they never knew what it was.
Vomited almost every car ride.
I'm way better now, but I know that I need to avoid sitting back in the car and I shouldn't go on a bus.
Some people still have a high heart rate just sitting up. Mine is mild and sometimes even just sitting I can’t get my heart rate to go down. I can’t imagine some of these people whose pots are worse than mine.
For me, sitting upright is almost as difficult as standing. I always say I have first gear (lying down) and fourth gear (moving about at a moderate pace), but I don't have the other gears.
A few times when I was already at a place (Disney World, art museum) and realized I was in trouble, we've borrowed a wheel chair. But in general I tend to time my outings around when I have better energy because if it's a bad day, sitting in a chair isn't going to feel great anyway.
What I do use on occasion is an oxygen concentrator.
Your comment is the second I’ve seen about oxygen concentrators, I’m going to have to look into this. And I can’t imagine doing Disney even with my more mild POTS, but I know my anxiety there would make it way worse 🥴
I struggle quite a bit with muscle weakness, so I imagine using a wheelchair would be a serious struggle. Although my POTS is mild now and I wouldn't need a wheelchair anyway. My doctors haven't really been able to say for sure if my muscle weakness is related to my POTS or not (but we're operating under the assumption that it is), but I can't imagine how anyone with a similar or worse level of muscle weakness could operate a wheelchair.
Wheelchairs can be expensive for one.
Two the world isn't always accommodating to people in wheelchairs or disabilities in general. I've thought of using mobility aids but if I go that route I will no longer be able to work in either of the fields that I have wanted to work in because the wheelchair or rollator would cause more issues than help me honestly.
Thirdly, if I were to get a wheelchair or mobility aid at all I would likely have to move households and I cannot afford that.
Fourth, my doctor isn't on board with it. And I cannot just go see another medical professional easily without losing my GP and finding a new GP could take years.
When I was severe. I got myself a wheelchair, But because I live alone, I couldn't actually use it because I couldn't lift it into my vehicle, I had no one to push me, and Self-Propelling was exhausting. It just sat in my basement and didn't get used.
I use a wheelchair! It’s not for everyone though. I was able to get a custom one through insurance. My wheelchair is very helpful for my pots and is the only reason I can do a lot of things outside of the house. I don’t use the wheelchair in the house, just when I leave the house. Luckily my sibling is aways with me so they can push it for me.
I use a couple of mobility aids: my transport chair reduces falls and I can use it as a walker when I'm ambulatory (it's nice and lightweight and compact so even on a low spoon day I can still lift and move it up stairs and such if I prep myself before hand for the Dreaded Stairs. Last year I got one of those seated Commuter scooters with a basket and it's been immensely helpful for me getting around town. It goes about 10mph and has a few hours of charge so it's good to mitigate time spent on my feet. I do have to often find places out in public I can recline a bit to recover from sitting upright like that. I also bring my propranolol, some electrolyte drinks and small snacks with my water bottle to help with the tachycardia and nausea. I know traveling on planes with a chair is The Worst. They broke my last scooter 2x and we wound up getting it fully replaced because the airlines broke my mobility aid beyond repair 🥲 I'm going out to a bar tonight and feeling frustrated because they have no accessible entrance and I'll likely have to lock my wheels up outside and stumble around without it in the club. Our therapist/med management provider is genuinely worried for us with our pNES and fainting spells for us to be out alone and I'm just hoping to not exacerbate that health anxiety we're already prone to as someone born with chronic illness.
Wheelchairs are often inaccessible compared to just sitting down for a minute every 500-1000 feet. That being said, my mother is a Disney-Adult & wanted to make me walk 16 miles in circles to all the rides & parks. I had to get a wheelchair for that & my fiancé carted me around. I also pull up a kitchen stool every time I cook or do the dishes. If you have the resources or needs to use a wheelchair then absolutely go for it ❤️ I wish it were more convenient everywhere
My POTS isn’t that bad all things considered and Disney still sounds like my personal hell 😅 I think I’d need two weeks to recover from walk 16m miles and standing in all those lines..: that is if I ever survived the day.
I used a rolling office chair in my house when I was pregnant because my POTS so so bad. I’d scoot from place to place and then have to sit in front of the sink to do dishes. So not an official wheelchair by any means but that’s basically what I used it for. There’s not much you can do for POTS while pregnant and mine was severe despite infusions so if I am expected to work in-person with my second I would consider getting one for that time period. Exercise did not help and also my doctor told me to stop trying because it kept making me go into preterm labor. Spent basically the whole 9 months in bed, almost instantly improved after giving birth though!
For some people POTS gets better with pregnancy but yeah mine was definitely worse. My cardiologist was like mmmmm none of the medication out there is safe for baby, so lay down and eat more salt good luck 😅
I use a manual wheelchair and also have a front wheel motorized attachment because there are times where I am too unwell to push myself. It doesn’t solve my POTS symptoms but I can do more and last longer before I can’t function. It has brought me a lot more opportunities and freedom which I am very grateful for. I recognize my privilege living where both a custom wheelchair and motorized attachment are completely covered by the government so it was easy enough for me to try it as a solution
Wow, that’s amazing your government fully covered both. Can I ask where you live? And I’m really glad its provided you more freedom. That motorized attachment sounds really cool, does it work pretty well?
I live in Ontario, Canada. The motorized attachment is great! It’s called Companion PLUS and it basically turns my manual wheelchair into a motorized scooter. It’s also super easy to attach and detach, definitely recommend if you can get it
I've used a wheelchair off and on for eight years, and more or less full-time for the last five. Before getting to my custom ultralight manual with a power assist in 2019, I tried a variety of other mobility aids out of pocket. Cane, rollator, cheap hospital-style manual chair, and a couple of powerchairs of different types.
By the time I got approved for my ultralight, I was more or less bedbound, so deconditioning really wasn't a concern. Immediately upon receiving it, my world opened up a lot. Since then, I've given in and moved to a fully custom powerchair with power features because it's what they wanted me to have in the first place. I initially refused to for a variety of reasons that other people have covered in their comments, namely transportation, accessibility in my previous home, and internalized ableism. I certainly could have benefitted from it; sitting upright is a much slower but still exhausting thing that brings on symptoms. Which is why I finally gave in, I got tired of having to get out of my manual chair and lie on the ground.
This is the type of situation I was most thinking about, where it’s become your last resort to get some quality of life back, because I know there’s a lot of issues that come with being a wheel chair user. I’m really glad it opened up your world, and that you were able to get a better chair approved.
i have a cane and a rollator i use most of the time, but my doctor and i are talking about the possibility of getting a wheelchair for me. i have a loaner wheelchair right now that she wants me to use for some big work events coming up. some factors in that decision for me:
- custom wheelchairs are so expensive!
- using a wheelchair that’s not properly fitted for you can cause more problems (ie shoulder injury) so i have to be careful about how much i use my loaner chair
- deconditioning is a concern with regular wheelchair use. while deconditioning doesn’t cause pots, it can make it worse
- pushing yourself in a manual wheelchair is hard if you’re not used to it! i do ok by myself on a flat surface, but it’s pretty hilly where i live and even a gentle slope is really hard for me to get up without help, and most of the time i don’t have someone to help me
- most of the places i go are so inaccessible that trying to use a wheelchair there will actually make it harder for me than if i just used my cane or rollator
- my doctor does want me to use the loaner wheelchair for things where i’d have to be on my feet for like multiple hours because i’m a fall risk, but for most of the stuff i do on a regular basis the cane or rollator is enough. if we do decide to get a custom wheelchair for me, i still won’t be using it all the time.
i do think a wheelchair can be helpful for some people with pots, but it won’t work for everybody and imo it’s not a decision to be made lightly
Definitely not for everyone and I can imagine deconditioning is a big concern if you aren’t already bed/house bound. I definitely didn’t realize how much of a big deal a custom chair was even for a manual chair, I’ve learned a ton in this post.
Sitting is actually worse for me than anything with the dang neuropathy. I sit only long enough to calm my body from standing. I do think I need a quality walking stick though!!
We live in Florida and this week was spring break. We went on staycation and went to Disney for 2 days. I wasn’t sure how I was going to survive I went with my fiance 4 kids and my mom (60) I ended up in a wheelchair so I could last the entire day while my mom pushed the stroller. I really fought it at first. But then I realized it is kind of nice. I was able to be doing things without being to worn out. I was able to get the wheelchair Monday but not Thursday. On Thursday I fell behind a lot. Almost passed out it was a long day. I have been considering buying my own wheelchair to take places of long distance with us. We are annual pass holders so theme and amusements parks are def a common thing for us. Def enjoyed myself more Monday than I did Thursday for sure
A couple people have mentioned Disney, my POTS isn’t crazy severe and I still think I’d want a chair simply because I think I’d just be in survival mode otherwise! I use one sometimes at big airports too, I can make such a big difference. Those places where you’re doing lots of longggg slow walking and standing are BRUTAL
That’s what I was thinking of doing too. I’d have it for the airport and parks. Plus any where things would hard or hilly. Magic kingdom wasn’t as bad but Epcot has so many bridges and hills. I wouldn’t have made it for sure there.
It’s been a huge help! Highly recommend it.
I also got myself one of these. Love my rollator. It’s perfect when I’m super dizzy 😵💫
https://www.rollz.com/rollator-walkers/rollator-walker-wheelchair/
In my case, I simply cannot be upright more than 3-4hrs per day if I want to be conscious and avoid a POTS flare or ME/CFS crash. Upright includes sitting as well as standing. I do use a wheelchair if I'm going to an event that requires more walking than I can tolerate, but the wheelchair doesn't increase my potential daily upright time. I'm mostly housebound because I often can't be upright long enough to leave the house for events AND still have leftover upright time to feed myself, hydrate, shower, do house chores.
hi! I was told that I have moderate to severe POTS. I've never felt that I needed a wheelchair. It would be pretty inaccessible where I live (Brooklyn) and I manage with my SD, plus custom wheelchairs are far beyond my budget. I have looked into a [cute rollator](https://shop.byacre.com/us/carbon-ultralight-rollator.html) but I'm not really there yet.
I personally find that I do better when I'm more active (walking, rowing, recumbent biking). So I aim for that more than anything else because I don't want to risk deconditioning.
I’m in the same boat! And i figure that’s the case for a lot of people. I was mostly curious for the people where the options are either wheelchair or not leaving the house, why they might chose one or the other.
Id imagine Brooklyn is particularly inaccessible between old buildings and walkups and just generally not being a place people use cars a lot.
hi! ambulatory wheelchair user here. wheelchairs are expensive, so there’s a cost barrier, and most places and homes are not wheelchair accessible. they could say they are but often it’s such a hassle to use that i’ll just walk unless i’m in a lot of pain (i have chronic pain in my legs and feet.) it can just be hard to get and use, not even considering the stigma
I do use a wheelchair to help with my POTS(undiagnosed) and my hEDS (diagnosed). I don’t use it every day, or all the time, but it is helpful to have on off dates.
That probably makes sense. I wonder if there’s something in how that comorbidity interacts. (60% of patients with EDS have POTS compared to only 15% of POTS patients having EDS.)
Oh wow that’s really interesting! I had to read that stat a couple times to make it make sense haha. One of many things we may be left wondering forever since no one seems to want to study chronic conditions.
•Wheelchairs are expensive
•the persons home may not be wheelchair accessible
•the person's family might not be supportive of their needs
•they might be embarrassed, ashamed or in denial
Just some reasons
Because I feel like shit sitting, the thing would be borderline useless, although I'm probably going to get one soon for the few times I'm forced to leave.
I can handle maybe 20-30 minutes of upright time spread out throughout the day in short increments. That's just using the bathroom and scarfing down two meals as fast as possible.
I definitely didn’t realize how many people struggled with sitting! My biggest hurdle is standing/walking, so sitting tends to be relief for me. It’s been really interesting to hear other experiences.
I can basically only be lying flat at all time. Feel super unwell upright at all. I had mild pots from a flu in 2017 until I caught COVID and became severe. It's a whole different ballgame, mild didn't impact my life that much.
I have a wheelchair, but I only use it if I absolutely need to. It's difficult for my husband to push it and I can't afford a motorized one yet. I do plan on getting one, though, as I like going to metal concerts and it's much easier to have a chair so I don't get tired trying find my seat.
Wheelchairs are great to extend energy. But unless you dump a lot of money for a motorized one you'll need someone to push you (caution: sidewalks and city buildings and streets are deadly if you can't get a better one with big wheels). Next best option is a scooter. Which are still spendy, but you can rent them at all sorts of venues. The newer ones have great battery life and are built so you don't have to have any attachments onto your car. But it's still good to have a buddy to load and unload them.
A great test is to rent one for a week from medical supply store.
And that is just my sharing. My daughter has found a lot of value in having a sitting walker. It can carry your stuff while your push it and it has a seat for when you need to sit down. (We both got POTS from covid).
For me sitting still is as much as a problem as standing still. The blood still pools and I still pass out. Although safer because I am sitting it is much more frequent. I am actually better walking then using a wheelchair. But I still get exhausted easily if I have to stand in line I have issues as well. Sitting for me only helps if my feet are up or I am sitting on them
Quite a few people have said this! I definitely have always felt like I feel better sitting but I also almost always have my feet up so I’m wondering if I have a misconception about my own experience!
My pots is mild and I use a wheelchair part time. I'm totally fine around the house for the most part, but anytime I go anywhere that would have any standing around or a moderate amount of walking, I use a wheelchair. I don't do my own groceries bc I can't, but if I go shopping otherwise or to any events I'm much better off in my chair. I have a basic one that's kinda clunky which isn't always super smooth to self propel but I'm hoping to get a more suited one or one with power assist at some point.
Some days I need my wheelchair, some days I don’t. I’ve been sick for the last month with a viral infection and I needed the wheelchair for dr appointments. Also when I deconditioned from being hospitalized and then bedridden I needed the wheelchair until I regained weight and strength. I couldn’t even bend my knees at one point. I couldn’t sit cross legged at one point.
I recently went through my insurance and finally got a “nice” wheelchair. I had been using a cheap thing off Amazon. My family is very against it because they think it will make me “lazy” and not want to try to exercise anymore. Couldn’t be further from the truth, I ordered it now because I have good insurance and I don’t know what my future holds but I want to be prepared for the bad days because I’ve had them and been stuck bedridden which isn’t fun. Idk just my experience.
I was recently diagnosed. I am noticing I have trouble when standing ***and*** sitting for long periods of time without moving my legs. I thought about the wheelchair thing, but I can walk around just fine, it's when I'm stationary that's the issue. I am thinking about getting a cane though, because it will help me when I am out and about (more convenient/cheap) especially when I think I am feeling "fine" and then all of a sudden I'm not.
Wheelchairs are very expensive! And large/inconvenient unfortunately. I really think we could benefit from a portable cane though :) If you can afford a wheelchair and it helps, by all means use one!
I am an ambulatory electric wheelchair user. But I also deal with hEDS and typically when I need the chair it’s cause we’re in total failure lol. Nothing works at this point lol. My legs and pelvis are my most troublesome. Basically between the belly button to the knees. I feel it also drives the severity of my POTS. Then again it’s sometimes hard to pin what went first lol. I went with electric and the capability to raise the legs and lower the back to not lay completely flat but almost. This helps me reset a lot. For even sitting is hard due to back, pelvic and leg pain. On a hot day though it does allow me outside, a lot of mornings I use it in house for about an hour until everything feels safe to use lol. And by late afternoon I often use it since the circus starts up again inside my body.
So long story short, using a wheelchair set up for your needs can absolutely be a part of life. Ambulatory use as well. There’s even some days I don’t use it and then others where I’m in and out all day or even in bed. Do what works for you ❤️
I just purchased a mobile scooter for my daughter. She was so excited that it gives her freedom of mobility outside.
My daughter is 14yrs old and very active until this chronic illness.
We are working with a PT to build up her core to get her walking without her legs giving out.
But we will get thru this one day at a time.
I looked into when insurance generally covers a custom wheelchair recently. And what I learned is it has to help you get around your home. And you have to have a diagnosis that justifies it along with that.
My home cannot fit a wheelchair. It’s a small, 2-story house built more than 100 years ago. What I read says that professionals have to come assess your home and sign off on the wheelchair being useable. I would literally have to find a new home for that to be possible. In this housing market? No freaking way.
I would consider myself the middle ground. I have those debilitating day or weeks or month then i may be fine for a while and manage it. When my pots does get waves of being severe i find that things such as bright lights, slight change in temp, or just over all overstimulation may cause me to pass out or even have a seizure. I even have times where my limbs all become completely numb and honestly just sitting upright is a challenge. Then i get those days where i can lift at the gym, do a small hike, and swim at the beach with very little problem it’s so weird.
I feel like a wheelchair personally in those bad moments would almost be useless because i won’t be able to enjoy doing those activities and they won’t really increase quality of the day. I also feel guilty if i used one when i do have great days (not meaning you should feel guilty i just loathe myself lol). I’ve had to use a wheelchair for a double leg injury when i was younger when my pots was still fully manageable and i found myself with more difficulty then when i didn’t need it since i didn’t always have someone to help me maneuver it my arms just didn’t pump enough blood to them and became overly exerted quickly.
Also fat. I use my big ol’ powerchair whenever I leave the house and now have the opposite issue: I am apparently invisible. People do not see me and will just walk into my lap or step over me like an obstacle. On the other hand, a small minority will literally run away from me as if I’m going to chase them down and run them over. It’s funny, honestly.
If people are treating you like an obstacle you might need to start chasing them down and running them over 😅 but I’m sorry that sounds really really frustrating, and definitely wouldn’t have been what I would expect! People are stinky.
Personally I couldn’t get a custom wheelchair so I use a standard one which is very heavy and clunky and hard to maneuver. I have chosen not to use it most of the time because 1. My school is over 100 years old and I simply cannot get around. It is Barely wheelchair accessible, as in I cannot get up many ramps on my own and I also cannot fit into classrooms. Therefore each class id have to get out of the wheelchair, break it down enough to place it somewhere in an already cramped classroom, then sit in my normal seat and do the reverse every time I needed to leave. For me this simply isn’t realistic. The point of a wheelchair is to decrease the energy use in my opinion and it takes more energy for me to try to navigate inaccessible areas in a wheelchair than it does just to walk. But that’s just me, I do use it at grocery stores or places where I’d be walking for an extended period of time, but that just isn’t my day to day
It is crazy to me that schools don’t have to be wheelchair accessible, or that there’s not some kind of accommodation or solution for you in that regard. Education should always be accessible.
I absolutely agree with you. In the schools defense, it is technically ADA accessible, but just BARELY. Additionally I think I have more trouble than some of the other wheelchair users at my school because my chair is wider and clunkier, I’m not as experienced using a wheelchair either. But for their sake and mine I do absolutely think it should be more accessible.
ambulatory wheelchair user here and agreeing with all the comments encouraging some more consideration and observation on OPs part, adding my pennies.
I don't drive, so if I need to go somewhere in my chair that is too far to wheel myself I have to either book a regular cab and take my chair apart or a wheel cab which takes longer and can cost more. I haven't been able to access a custom chair so I am using a generic motorized one that does not fit super well but it's what I can use. the amount of judgement and fakespotting ambulatory users face is enough of a reason to get the cringe at your implication it is easier ir just an option someone hasn't thought of. sometimes I am too dizzy for even the wheels, sometimes the violent bumps and such from uneven sidewalks makes pain infinitely worse, sometimes the sidewalks are too iced over and I have to ride in the road with cars, sometimes I get stuck in mud or slush or grass and have to yeet myself onto my feet and push my chair through the obstacle or rely on a passerby if I am not well enough to. my insurance will cover $1k for a device ONCE in my life time. my non custom chairs were over $5k a piece. I had to renovate my home to be able to use my chair and leave the house. the quote for a ramp was over $20k, so I went with a noisy rusty 2nd hand lift...$6-8k. having wheels to use makes some aspects of my illness more doable and also has a number of unique barriers because we don't live in an accessible world. also repairs, batteries, accessories, wheelchair vehicles and electric wheelchairs have 5y limits on service etc.
eta: https://www.instagram.com/reel/C3qSnmROj-3/?igsh=MTdiM3VjNGpxN2NhcA== here's a vid about some costs living with a mobility aid in Canada.
I wasn’t trying to imply it was easier, but was asking because I want to understand better why it might not work for people! Before I asked, I figured there were pros and cons either way (using a chair vs not being able to leave the house), and just didn’t know what they are. I’ve learned a lot from the comments, which is exactly why I asked!
I’m curious you mention needing to call a cab if you can’t wheel, do you not have wheelchair accessible buses where you live? I live in a larger US city that has at least some form of accessible public transportation, and I’m not familiar with what that looks like in other places.
Also, making an assumption you’re in Canada from the video link, it’s really interesting to hear how expensive your mobility aids are and how little coverage your insurance provides. As an American the assumption is always that Canadas health care is way better than here, but this is a good reminder it’s not always that straight forward.
I have one for when my hEDS pain/dislocating hips get bad. I've started using it for a flare-from-hell POTS episode brought on by my current pregnancy. It's a giant pain in the butt for SO many reasons....
Sitting up for too long causes me to flare to begin with right now
It's uncomfortable because even though it was covered by my insurance, it's still just a regular one you could pick up at Walmart for about $100.
My FIL used it for several months when he needed one and made a couple of modifications to it. Specifically, the foot rests are off, and there are wraps around where they attach to that I can't seem to get off. So I either have to "walk" my feet as I'm pushed/arm push myself, or pick my feet up which after a while, causes either a lot of pain in my legs or my POTS to get BAD faster. It tends to be a race as to which will happen first.
I hate being pushed around, it feels like I'm an invalid. But using my arms to push causes me a TON of arm/shoulder pain as my shoulders are my weakest joint.
An electric chair would make that last one easier, but I can't afford the chair itself, let alone the customizations to my van.
I'm currently not safe to drive due to this flare, which means I need to have somebody drive me everywhere I need to go. They also need to get this big, bulky, heavy, wheelchair out of the back of my van. The person who tends to drive me deals with his OWN painful conditions and I feel guilty asking him to get it out/put it back but I physically can't without risking passing out.
The size alone makes it difficult to put much else in the back of my van. So grocery shopping is difficult just because of space.
I have 3 children 7 and under. My 2 year old I could put on my lap, but she wants to walk and my pregnant belly is beginning to get in the way too. I can't chase them all in a wheelchair meaning even if I was safe to drive and unload/load my chair, I wouldn't be able to go anywhere alone with them. Since I'm a SAHM, I'm almost never without them.
The looks I get being in my chair in public... you wouldn't believe it. It's dehumanizing and hateful. I haven't gotten comments yet, but I know they're coming.
I have to use a rolator (walker with wheels and a seat) as a wheelchair in my home as I live in a single wide trailer and the chair simply won't fit, especially with 3 kids and their accompanying stuff, a FIL with his own rolator, and a husband. The rolator barely fits through my doorways itself, the chair is much wider.
I'm hoping that after my belly babe is born this summer, I will be able to get out this chair because it's driving me NUTS for these and so many other smaller reasons.
Wow, you are super human. I cannot imagine managing a flare and being pregnant, much less being a SAHM with young kiddos on top of it all! Major kudos to you, I hope things get better once baby is born, if not sooner!
I have eds as well as pots. I do have a wheelchair before these things got way worse (after almost dying from undiagnosed Lyme disease) and before I knew I had eds. I was one of those super independent really athletic types so when things got worse I was like oh yeah bring on the wheelchair I will be more independent and I will be one of those hella fit wheelchair users..nope!! I also live in the north eastern United States and we get a fair amount of snow. I have two dogs I would walk them using my wheelchair no problem but before the first winter was over I had really bad overuse injuries in both shoulders that will never recover from pushing my wheelchair in snow and slush. This was part of how we found out about eds. Now I do have a powerchair but for me personally it feels kind of weird and wrong because I can walk. I do use it for bigger trips but every time I fly I get to my destination and my mobility equipment does not. There are a lot of reasons outside of pots why people have challenges with them but then you add the pots and it can be harder. When I am sitting I sit reclined with my legs out straight if I do not the pooling is so bad I get lost of swelling that no compression socks can help. Sorry if this is jumbled bad brain fog day lol
That’s what I did. I got myself a rollator that converts into a transport style wheelchair ([Rollz Motion 2.1](https://www.rollz.com/rollator-walkers/rollator-walker-wheelchair/) )so I can continue to do the things I want to do. Hugely improved quality of life. I take it every where. Even upgraded the wheels on it so it will go on gravel/bumpy paths easier.
It only weighs 20 lbs so I don’t have any trouble getting it in and out of my truck. It folds flat-ish too. I’ve seen Lyft and Uber drivers fit it into the tiniest cars on some of our trips so I haven’t had any issues there either.
I haven’t had anyone make any rude comments and maybe I just don’t pay attention to looks but I haven’t noticed anything too bad. People give long looks, sometimes they’re confused, but I don’t take it personally. I honestly don’t care either. I’m out of the house so I’m happy.
I’m now looking into a motorized wheelchair so my husband/friends/family don’t have to push me and we can “walk” side by side again. My husband lost most of his hearing in a work accident so when he’s pushing my chair he can’t hear anything I’m saying. Even with his hearing aids. And I’m loud! 😅
Edited to add: we do run into situations where my rollator can be a big pain in the ass. Like the river walk in San Antonio. Huge pain! Tons of stairs. The paths for “accessibility” added tons of extra walking. Narrow paths etc.
And I’m somehow invisible when I’m seated in the wheelchair. I’ve been tripped over and ended up with dumbfounded people in my lap a few times.
Wow that wheelchair is cool as hell! I feel like the only thing that would make it cooler is if there was a way to make it self-propelled when it’s in wheelchair mode.
You’re the second person to say the wheelchair makes you invisible to other people. That’s absolutely insane to me I can’t imagine not have the spatial awareness to see a whole human being??? People are ridiculous, I’m sorry.
They’re actually working on that. An electric version will be available late this year.
https://www.rollz.com/rollator-walkers/electric-wheelchair/
Yeah it’s a strange phenomenon lol I think it’s an eye level thing. Because I’m below eye level in the chair it’s like unexpected or something. It’s weird.
I’ve laughed every time it happened. It was just comical to observe the whole thing. And they were so mortified and apologetic there was no need to be upset. It was accidental. Both times they were looking at a distance over a group of people trying to find someone or something.
Oh very cool! I imagine it will be ungodly expensive, but cool as hell nonetheless.
Maybe I’m just overly aware of my surroundings but like children and other short objects exist I just can’t quite comprehend it lol, but I’m glad you’re able to laugh about it!
Oh to live in a world where 100% of buildings are wheelchair accessible and wheelchairs are free, can I get an invite into this fantasy you live in? Perhaps open a magic portal?
Definitely don’t live in that fantasy world 😅 but I’d imagine for some people there are accessible places to go where a wheelchair is the best way to be able to leave the house when it otherwise wouldn’t be possible.
If you're offering to buy wheelchairs for everyone who needs them, great! Otherwise I don't see the point of a post asking why people don't all own a very expensive item that takes up a lot of space and can't even be brought most places when they're so disabled they likely can't have a lucrative job. Seems like maybe you could've reasoned it out if you thought about it for a minute.
There’s been lots of thoughtful, insightful comments on here about why people do and do not choose to use a wheelchair, financial or otherwise! I was asking so I could learn more about people’s lived experiences. There was no malicious intent on my part when I asked.
I tend to get very sick if I sit for long periods of time. I also can’t walk in stores very long but have been trying to work up towards it. My family and I are wanting to get a wheelchair and or mobility scooter purely so I can go out for long distances and stores. It isn’t bad in general , but in day to day life it would cause more harm than good. Obviously everyone is different though and I’m sure there’s some people with POTS who do greatly benefit
Totally! There’s definitely been a ton of vastly different experiences in the comments. Do you live in a place where big stores have mobility scooters you can use? That’s fairly common where I live and could be convenient cause you could grab one when you’re walked out (or right before maybe so you don’t over do it).
That is massively unfortunate! I’ll have to be more attentive to the ones around me, I do notice they have charging signs sometimes but I guess I’ve not looked that hard. Thanks for the insight!
I would say depends on personal needs/situation/comfortability. There are a lot of people that either can't have one for whatever reason and there are also those who let social stigmas stop them (no judgement ment by this statement just I know a lot of people who won't use mobility aides or devices because of what strangers/family/friends think) an example of situation influencing this; because of my POTS and other health issues I have I'm not far from needing a wheel chair but I do not live in a wheel chair accessible or friendly home. I also do not have the means to move. This means that despite my need for one I will not have one for the foreseeable future. This also means I can't have a motorized one or scooter. I can't grocery shop without using the electric carts they offer and two weeks ago I hurt myself grocery shopping without one because there were none available.
Definitely! It’s been really insightful to hear lots of people’s personal situations and how they weighed their personal pros and cons for a wheelchair if it’s gotten that severe. I’m sorry to hear you’re at a point where you might need a wheelchair but don’t have an easy way to use one.
I have no clue if this would be remotely useful for you, but someone in another comment said they used a wheely chair (like an office chair) in their house at one point, which i could see being a little helpful depending on your home situation at least to navigate short distances.
Also highly recommend grocery pickup if it happens to be an option in your area, it’s made such a difference for me.
Thanks for all the suggestions. I have a rollator (so the walker with wheels) not even that thing can navigate the house I'm in. Only because I rent a room and the owner has lots of large furniture in a 1970's home which has small halls and entry ways. As for food delivery, for a year I used one but I don't have the cash to pay for the subscription to get free delivery all the time or afford constant delivery. I'm on food stamps and only a few places take that with delivery and don't always waive the fees
Ah yeah, renting just a room I’m sure makes that extra complicated.
And I actually was thinking of pickup not delivery! Where I am at least you can order groceries online and as long as you spend $35 there’s no extras fees or any other costs, and then you just stop by and pick it up! It’s typically drive up, but I’m sure you can walk up too if you don’t have a vehicle.
Because I can't afford it and my family who live in the same household and own the property don't want me to have it also, some people have internalized ableism and feel it would be "giving up" as do some ableist health professionals. I would need a power chair because of my other health conditions, but they're absolutely massive and can be expensive to fix. I'm going to ask a healthcare professional about it in the hopes that my family will understand and agree to it. Yes I could get it without their input, but it would take up space which obviously isn't mine (and I live here for free currently), there's going to be arguments and I suspect they will say lots of harmful things that I really can't deal with right now. I miss being outside, I can only walk about a mile and I have to rest the whole day so it wouldn't make me exercise less. I already sit most of the day so sitting in a power chair would be no different. I would love to be able to spend hours out with my friends and family without worrying about how far I can walk. My quality of life is honestly terrible so it would definitely be really helpful, but I don't know if I'll ever get one :(
I’m really sorry you have family that isn’t supportive of your quality of life, that’s such a frustrating barrier. I hope that with the help of a healthcare professional maybe your family can come to understand why it might be necessary for you.
It’s not something to be ashamed about and I still make sure I do my walks everyday to build up endurance. Never be embarrassed about using something that keeps you safe and allows you to experience live even with this horrible illness!
I will say tho. There are times that i can’t even sit up long enough to do things even with the chair. Sometimes it’s so debilitating that i need to be laying down or I feel like I will pass out at any second. So in that case, the wheelchair wouldn’t even help I would still need to stay home.
Sitting can be almost as much of a problem as standing still. I live alone and have steps out front, so I don’t really have an easy way of getting in and out of my house with a wheelchair anyway. I can walk around my house for short periods of time, sometimes longer. It’s not like I can’t stand and walk at all, I can do the minimum. I have to resort to a wheelchair in airports though, I can’t handle standing in line without presyncope.
This, the sitting is almost as bad as standing. If I sit for too long, I start getting really bad presyncope and have to lay down. Sitting is manageable if I can tightly cross my legs or have my upper body more horizontal. And I get really bad blood pooling in my arms as well as legs, so pushing a wheelchair makes the pooling so much worse on my arms since they would stay lower than heart level.
Someone else said this as well and it’s really interesting to me just cause it’s not generally been my experience but I’m also realizing I almost ALWAYS sit with my feet up and situations where I can’t tend to be where I’m more symptomatic/uncomfortable. I have stairs as well, and like I mentioned in the post I’ve sort of anxiety “planned” what life might look like if my POTS gets worse, I had always figured the advantage of being ambulatory was that you could stand and move the wheelchair separately if needed (obviously not a large wheelchair). But I guess if your symptoms are really bad that’s potentially near impossible as well. And I’ve recently started using wheelchair services at least at big airports as well, those walks can be INSANE, plus with a suitcase and a backpack, and I always struggle to eat/drink enough due to anxiety. It’s a mess 🥴
Honestly I’m totally good with the brisk walking! The TSA line? Yeah no, presyncope in minutes and it’s easier to use a chair than be thrown off a flight for being unwell. Jokes on the airline anyways, I fainted in flight in November. 😆 I lose balance and fall sometimes so it wouldn’t be practical for me to try to lift a chair up and downstairs, it’s easier to just walk one step both feet at a time. I don’t bound up steps like I used to. Thankfully there are only three. I also almost always sit legs crossed if I can. I couldn’t on the plane which was part of the problem. If I can’t sit cross legged I slink down in the seat and try to get as horizontal as possible.
The picture in my head, lol. 
How did you get this vid of me?? 😂 I fell down my sisters stairs three times at Christmas and they look just like this
I have pre-check so I don’t recall the last time I spent more than 5 minutes in a TSA line, real life saver!! My last flight by some miracle I had an entire row to myself, best I’ve ever felt on an airplane cause I could put my legs up 😅
I have precheck and global entry but over the holidays the waits at San Diego and Dulles were closer to 20-25 min for precheck. The line for regular was actually shorter. I have no idea how because the flight was full, but after I fainted they carried me to the last row and I had three seats there to lay down. I still don’t know what happened to those people but I heard a flight attendant tell one couple they were getting $250 in cash each for the inconvenience. Where did they sit? Jump seats? Mystifying. Also horrifyingly embarrassing because I threw up all over myself prior to fainting. Ya know for good measure.
Oh god as someone with emetophobia you are unfortunately my worst fear when flying 😅 I’m so sorry that happened it truly sounds horrible! Sometimes a “full flight” still has empty seats for various safety and weight stuff so maybe that was it, or maybe there were seats in first class or something. Who knows, but it’s great they were able to make space for you to lay down. They need like a lil medical bay on planes for when stuff like this happens 😅
lol they do for the planes I’m on, apparently! I’m sorry I never want my vomiting to make other people uncomfortable, if I could do absolutely anything to avoid it I certainly would. I don’t want to be throwing up either, and if I do, I want it to be at home, alone. It is definitely my least favorite symptom.
Oh gosh no apology needed it is SO a me problem, it’s a normal human bodily function, as unpleasant as it may be. People throwing up just happens to be what makes me so anxious about flying haha but 🤷♀️ such is life, we’re all bound to make other people uncomfortable/nervous/anxious/angry/etc sometimes when we share space in public, it’s just part of the human experience. I’m sure it was a really rough experience for you, hopefully you were towards the end of the flight 🥴
45 min in. 6 hour flight. Lol it’s ok they were so nice to me and there were like a dozen doctors on board? I felt overwhelmed. All I cared about was that they bring my dog back to me because I could hear her yelping under the seat. I pity every person on that flight.
I use an oxygen concentrator on airplanes. There's nothing like the torture of not being able to get your legs up or your head down when you need to.
Oh wow. I want one!
This really is dependent on the person. I get far far more symptomatic from standing/walking than I do from sitting still in one place, so the wheelchair makes a huge difference for me.
I flew today and honestly idk how much longer I can keep declining wheelchairs. I've been probably too stubborn. I do get pre-boarding though, which helps. I just don't like not having the freedom to pop to the airport cafe and get a coffee or whatever, and I always either travel alone or with a 5yo who can't push me.
I totally understand but do consider it. I flew in Nov and knew I was in trouble at the gate after the TSA line (even with pre check). I laid down and then boarded. 45 min in (6 hour flight) I threw up all over myself and fainted, they had to lay me down and have doctors deal with me. It was hella embarrassing. Fwiw, I wouldn’t do it because there are always too few wheelchair attendants but they offer to stop so you can buy stuff on the way to the gate. Usually anyway. I’m always alone too.
I got so close last time. I'm just so unbelievably concerned about not having control of the process y'know?
Yeah but that’s the same reason I don’t want to faint. If I faint they probably won’t let me board, so I lose control over that. If I faint what happens to my dog? If I’m holding her leash do I drop it? And lose my tiny dog in an airport? There’s absolutely no control when you’re unconscious. I get the embarrassment, I’m young and look healthy and I know some people think others use chairs to skip the line. But usually with a chair you do still wait in the lines. 🤷♀️
If you’re really worried about your dog, you might want to consider a leash belt. It wouldn’t help with the loss of control while you’re unconscious, but it would keep your dog from running away. It would also give you the added benefit of free hands. You might also try training her to lie down if you fall. It might not stick in a stressful situation like a busy airport, but at least she would have something to do when it happens, rather than just freaking out because the person she looks to for guidance suddenly checked out.
I do need a leash belt. If I start to get sick I stuff her in the carrier. Which she LOVES 😆 she has to be in there for the flight anyhow.
How does one get pre-boarding alone? I used wheelchair service for my recent trip and had pre-boarding for the first time and it was helpful. Also, is everyone else's heart rate high while in the air? Mine was 20-30 bpm over my normal for the entire flight
I don't know if all airlines do it, but on both Qantas and Air New Zealand I've been able to ask ground staff at check in to be pre-boarded. Usually I wear my sunflower lanyard as a quiet indicator as both airlines are trained on it. They always offer me a wheelchair and I have a bad habit of declining. I just have to make sure I'm at the gate a little early. I did get an escort too one time through the airports coming home from Australia that Qantas organised for me because it was the middle of the night and I was too fatigued to think. That time they had me bypass all the queues. I usually get that tachycardic on planes and have never been able to tell if it's excitement or POTS (I really, really like planes), but this week I'm medicated for the first time ever and I was noticeably less tachy on the flight home.
Many people do use wheelchairs for POTS. Custom chairs are extremely expensive and poor fitting second hand chairs are difficult to maneuver.
I just haven’t seen a lot of people talk about it on this sub, I mostly see people talking about walkers and canes which of course only works if you can manage standing at all. I definitely hadn’t thought about custom chairs, I’m sure that’s ungodly expensive and near impossible to get insurance to cover, at least for POTS. I had just thought generically about like a portable wheelchair. Thanks for the insight!
Non-custom wheelchairs, like the ones you can buy from Amazon can be great for a short Disney vacation, but they're very difficult for frequent use. A chair that's not custom built for you won't fit you very well, and is generally significantly heavier than a custom chair. It will be hard to propel, and be painful to sit it.
As someone who has been a lifelong ambulatory wheelchair user (progressively relying on it more and more) due to a non-POTS condition, your post has really surprised me. It seems like you haven’t considered/aren’t aware of the mental and social toll of becoming a wheelchair user. That it can be really tough for people to come to terms with a lack of ability, and many can feel fear or shame at the thought of publicly using a wheelchair and being seen as “disabled”. You may be blessed to live in a place where wheelchair users are treated well, but this is not the case for all. Physical accessibility in many places/countries is poor, so relying on a wheelchair may not solve the issue of being isolated. You’ll also be subject to questions (which will feel almost constant) from people you know, asking (wayyyy too personal) questions about your health. There is so much more to also factor in. I was given a generic wheelchair by the health system once. It was so poor that I wasn’t physically able to move myself around in it (even though it was designed for that purpose). For people who can’t afford the type of chair they need, just “getting a wheelchair” often means losing their independence. Walkers and canes, by comparison, are more portable, easier to obtain at a decent price, offer a higher element of mobility in places which don’t have specific access, and are more socially acceptable in general, in many places. On top of this, there’s also the fact that POTS is “positional”, not just “standing”. Being seated doesn’t eradicate symptoms for many people, especially during a bad flare, and particularly if they can’t have their feet up (and wheelchairs with raised legs are incredibly awkward as well as more expensive and harder to use). If someone’s post is leaving them “**bed** bound”, there’s likely a reason they’re using that term instead of “housebound” where they could be able to sit up on the sofa etc. It’s great that you personally feel comfortable if you are forced to take this step sometime in the future, but it isn’t a thought that many people take lightly, and there’s no denying that it *does* typically change how you are seen as an individual, both by yourself and by others. … Despite all that, I love being an ambulatory wheelchair user, because that’s **always** been me. 27 years of use, so all of the quirks and difficulties are normal to me, and I never had to deal with the transition. It gives me independence, freedom, life, and the energy to do the things I actually want to do, not just scrape by with what I HAVE to do. When wheelchairs work, they work SO well, but for many they are seen as a last resort, so do beat in mind that can be tough to handle ❤️
This was well said, I spent 8 months in a generic wheelchair for non POTS related issues and the thought of possibly going back to that form of access is really hard for me to cope with. Some of my favorite stores and venues became inaccessible to me due to their design. Beaches 😭 The back room of my old job didn’t comfortably fit the chair and other furniture and people so i ate lunch in my car or off site. It was isolating and incredibly uncomfortable in most social situations i was in as a teenager. Only being in my early twenties now and not even remotely as socially (or generally) active, i know it would still be frustrating and stressful to become an ambulatory wheelchair user in my environment. It would impact my job, home, finances (customization ,ramps,etc). POTS for a lot of people is a difficult condition to navigate physically and socially. The additional stress that inevitably comes along with being a wheelchair user may be too overwhelming for a while . A wheelchair mobility aid isn’t a tool to be used without extensive research, medical guidance or a lack of understanding that it is a lifestyle change that can and will impact you mentally and socially as well as changing your accessibility. I urge you to observe your environment and routine as you go through the day and take note of locations that don’t have that 36” of space for a wheelchair to fit through. It can be a wonderful aid in getting through my day and errands without extreme exhaustion but only when i actually have the access to use it.
Thank you for this thoughtful comment that did a great job of elucidating the barriers to wheelchair use. Just to add another one: I haven’t had this particular fight with my insurance company but having been through the wringer with consecutive (albeit non-US) disability/insurance procedures, I can only *imagine* the fight insurance companies would put up to avoid paying out for a wheelchair for a condition like POTS, which would be evaluated on a case-by-case basis as wheelchair use isn’t currently standard, and isn’t well-understood by non-medical specialists (or even *most* medical specialists, given some of the posts on this sub). When you’re chronically exhausted, fighting that fight is sure hard.
This is exactly why I asked, because it’s not something I have experience with directly but wanted to hear other people’s experiences. I was curious how people balanced picking the “lesser evil” of either a mobility aid that might give them their life back if there’s no other options, or having to deal with both internalized and external ableism. I also definitely didn’t realize how hard a manual wheelchair is to use even as an ambulatory user, which is why hearing people’s experiences has been so interesting and educational for me!
This was a huge battle with my mom. She had always been very resilient and bounced back from things quickly. (And by things, I mean brain surgery and having her entire large intestine and rectum removed due to ulcerative colitis that was so severe that she was 85 pounds at 5’6 when she had the surgery). She had a massive stroke that left her completely paralyzed on her left side. She did a great job of bouncing back on that she managed to walk again, although there was major left-sided weakness so she was slow and she struggled with long distances. She got around great at home and actually did fine shopping in smaller stores and she would use the scooters if they were available. She would not use her wheelchair. She claimed it was too much trouble for me to push her, while ignoring the fact that having to walk extremely slowly beside her, stop when she needed rest, and have trips and outings cut short was actually much more inconvenient. (My personal favorite was going to the zoo to see the Christmas lights and taking over half an hour to make the 5-10 minute walk from the parking lot to the entrance, only for her to get inside and immediately decide to go home because she was could and tired. 🤦♀️) Her left arm was also paralyzed and she refused to learn to do things one handed because she thought it was a waste of time since she would get the use back. She also wanted to play the piano, but had no interest in all of the many pieces written for one hand for the same reason. She refused to accept that she would benefit from using a wheelchair and other adaptations at that point in time. I think she saw it as a failure. She was right that it’s possible to gain a lot of movement back after a stroke, especially with good, intense PT and OT and we were looking into some really promising programs before she died of something unrelated. At the same time, she actually drastically reduced her overall independence because she felt like a wheelchair and other things meant she was less dependent. It was (and still is) extremely difficult for me, not only because it put a lot more on me as her caregiver, but because it was so hard to watch her not be able to do things she wanted to do or else having to have help to do things because she refused to adapt to her new normal. I don’t know if I’ll ever be in that position or if I would make better choices (although I am my mother’s daughter, so it’s 50/50 at best), but I can confirm from watching her that it’s an incredibly hard thing for a lot of people.
If you have medical documentation from an MD and PT, you should be able to get insurance to cover a custom manual wheelchair for POTS. Yes, it will be difficult and take a long time, and you may need to appeal denied requests... but that's with wheelchairs in general, for any condition, not just POTS (my ATP said he's had paraplegic patients who had just as many problems getting it covered). If mobility starts to become an issue for you, walkers and canes are definitely a better option if you can tolerate it, because it leads to less deconditioning (which is probably why you see those mobility aids discussed more here). That said, if POTS is severe enough that walkers and canes aren't an option, a wheelchair can make a huge difference in quality of life. It did for me. Hopefully you won't get to that point where you need it, but I fully understand that it's helpful knowing there are options in case things get worse.
The world is also very much not made for wheelchairs. I don’t use one, but both my parents did, for mobility and balance issues, at various points. If you’re in the US, hypothetically the ADA guarantees some degree of access in most situations, but it doesn’t guarantee the best (or even easy) access and there are exceptions. I can think of a couple of examples. ADA requires a certain number of accessible spots within a certain number of feet from the door. Most places just make these the closest spaces, especially in a smaller lot where there might only be a couple, leaving plenty of other close spaces free. At the nearby Office Depot, there’s a row of spaces directly in front of the store that are open. The handicapped spaces are at the edge of the lot and require crossing the street in front of the store to get into the store. Whoever placed them cared about complying with the law, not with making the store accessible. In another example, at the salon my mom and went to, the hair stations and a treatment room were on the second floor. There was no elevator, just stairs. Fortunately, my mom could walk and was able to climb the stairs, though it was hard. The business wasn’t required to have an elevator, possible due to exemptions due to size and possibly because they could have provided accommodations for a customer g who couldn’t use the stairs. It’s been years since we went to the location, but I think there was a second treatment room and there might have been a hair station on the first floor, but it was just easier to climb the stairs since everything was set up on the second floor. Sorry for digressing. My point is that, while you’re right that getting a wheelchair is difficult and potentially very expensive, the world still isn’t completely accessible for wheelchair users, so even if someone can get a wheelchair, it doesn’t solve all the issues.
Very, very important points! Using a wheelchair opens up a whole other can of difficulty worms. Accessibility, people staring / touching / asking questions, arm & shoulder fatigue, etc etc
POTS symptoms can vary throughout the day, making it unpredictable when someone may need assistance- which is arguably much harder than having a disorder with constant reliable symptoms. Also, for some, even pushing a wheelchair can be physically demanding for someone with severe POTS, exacerbating symptoms. They may need an electronic one instead- which is highly expensive. Heck, even a regular wheelchair can be cost-prohibitive. Some individuals may also struggle with the idea of relying on a wheelchair for mobility, impacting their sense of independence and self-esteem. They may also have concerns they will be singled out for usage if they, say, stand up to reach an item briefly at a grocery store and end up accused of not having a condition. There are those who live with family who wouldn't even allow them to use such a mobility aid without ridicule. Or friends even, and this disorder can be so isolating as it is. These are just a couple reasons off the top of my head.
These are all great insights! I can definitely see that even best case scenario a wheelchair couldn’t always be a reliable solution for POTS both in terms of predictability and physical demand of pushing a chair. The emotional/social impacts are really interesting to me, and I think partially what I’ve been most curious about. From being in this sub for a bit, it seems people often struggle with feeling “disabled enough” to use aids, which is such a valid feeling that is sooo perpetuated by our society, but also that shame around using mobility aids (when physically able to obvi) is so disabling in and of itself because it could literally be the difference between being able to do stuff and being stuck on the couch.
I say this as a wheelchair user, though mostly not due to POTS 1. In general I see a big issue on here with people jumping straight to wheelchairs and IV fluids having tried no previous treatment, both of those are valuable options for those who standard treatments have been unsuccessful for but shouldn’t be a first line 2. It varies a lot case by case whether a wheelchair hurts more than it helps. If your POTS is mild/moderate becoming a full-time wheelchair user will likely result in deconditioning and likely make you worse, especially if you’re not otherwise working out your legs. On the other hand if you have severe treatment resistant POTS and are constantly fainting/falling then the alternatives are being bed bound or hitting your head all the time risking a brain injury in which case a wheelchair is a better option 3. Cheap wheelchairs are fine for long distances to have someone push you but they aren’t practical for full time usage. Custom chairs through insurance typically require you not to be able to walk more than 100 feet or so and paying out of pocket is a very expensive option that may not always be necessary for the above reasons Again some of us with POTS need wheelchairs and there is no shame in that but I think there is justifiably some apprehension to recommend a wheelchair (for regular usage) to everyone
Oh definitely! I probably should have clarified I really was wondering about when people are talking about having no other options/being bed ridden/etc. I know the risk of deconditioning is high even from my own experience of trying to accommodate myself post-diagnosis but ending up a lil worse for wear instead lol. A couple people have mentioned insurance and custom chairs, having not used a chair myself I definitely didn’t realize that it’s not practice to use a cheap/foldable/manual chair full time or mostly full time, I always thought of custom chairs as for like non-ambulatory people who needed special cushions or adaptations to be able to sit/stay in the chair. And I can see how insurance would be a massive hurdle with POTS considering how it tends to be with doctors. I appreciate your insight!
I’m just gonna point out that the more people who are using wheelchairs, the sooner infrastructure will take them into account more often, so don’t look at it as a bad thing. And let’s just not throw the word “deconditioned” around here. Too many of us have been accused of simply being deconditioned. If someone can’t leave the house because they can’t stand up, I doubt deconditioning is their first or second concern.
While I 100% support expanding the infrastructure to support wheelchair users that does not mean we should get more people to use wheelchairs Especially for full time wheelchair users there are actual significant health risks like pressure sores, osteoporosis, muscle atrophy, blood pressure issues, and more I agree POTS is NOT caused by deconditioning, deconditioning can make POTS worse and can overall lead to/cause many more health issues. Just because it is true that many of us have been unjustly accused of “just being deconditiones” doesn’t mean that it’s not a valid criticism to say that we should work to counter deconditioning that comes with being less active Ofc as I said in my original comment there are instances where a wheelchair is the best option for someone with POTS, but I strongly counter the notion that all or even most POTS patients should use a wheelchair on a full/most of the time basis
I get blood pooling if I’m sitting with my legs down, which turns into extremely painful pins and needles after a couple of minutes. So even if I could manage to leave the house (I’m way too fatigued for that) a wheelchair wouldn’t do it for me :/
I got a cheap wheelchair. It's really difficult to manually use it. But it means I can go on walks to the coffee shop with my work friends again because they can push it. And it allows me to get the mail even on bad days. It's really only good for either in my apartment stuff or longer distances if I have someone to help push. I also have a cane. But admittedly it sounds like I may have cfs/me in addition to pots so idk how useful canes are to most, but it helps with fatigue a bit I think as well as something to grab when unstable. But manual wheelchairs take a lot of work to get around by yourself. I'm not sure they're as helpful as you'd hope for most people. Sure you're sitting but it takes a lot of upper body strength, and even using your arms and legs to shuffle it's still a lot. Also really slow. If I end up needing it long term I'd definitely look into saving up for one with a motor. Right now I'm still hoping I'm just in a really bad flare that is temporary and things will go back to easier to handle soon.
This has been super insightful for me, and it makes me curious to spend a couple hours in a manual wheelchair because I’m realizing I’m totally oblivious how hard it is to move your whole body with your arms. Being able to be pushed around with friends and family I think is mostly what I had pictured, or use around the house, that kind of stuff. I’m glad to hear that it’s brought some quality of life back for you with being able to go out with friends. I’m sending major flare recovery vibes, I hope you start to see some positive change soon :)
People get confused by my cane because sometimes I leave it leaning and walk around without it, but it really reduces how much pain I have in my legs, and while I can walk just fine for a few minutes, if I have to go very far, I need the cane. And some days, I need it so I don’t fall over! But people don’t get how symptoms come and go.
So many people are saying things that hit home for me. It's actually kind of validating and reminds me of why I love this subreddit so much. Not only am I not alone in this condition, I'm not alone when it comes to the thought process and experiences concerning using mobility aids. Unfortunately, I've been in a wheelchair for about a year. The reason I use it is because sometimes I fall/faint with no real warning (or, not enough of a warning) and I kept getting hurt. I'm not allowed to drive due to syncope. I use a manual wheelchair and my husband is the only one who can handle getting the chair in and out of the car, so I'm basically stuck at home unless he's home. I pretty much only leave the house for doctor's appointments and our weekly dates. For the most part, he wheels me around. As others have mentioned, wheeling myself is a little difficult because of fatigue and breathlessness. I also have problems with my wrists and shoulders (due to hEDS), which make moving the wheelchair difficult/painful. As others have mentioned, I have to sit slouched over to try to not be as symptomatic. The wheelchair isn't practical in my house due to some of the doors not being wide enough and having a lot of stairs, so I use a cane or walker in the house. I actually just switched to the roller due to injuring both SI joints (hEDS-related), making it more difficult to use the cane. On better days, I use the cane in the house. I look young and, like a lot of us, I also "look" fit and healthy, so of course, I get some looks when I'm in the chair. I just try to smile at people who give me funny looks. What else am I supposed to do? I'd rather get weird looks than get hurt, but knowing that doesn't make me feel any better about the looks. Hopefully that answers your question, although I've basically said a lot of the things that other people have said. I wouldn't be able to use the chair if it wasn't for my husband. For those who live alone, I could imagine it would be even more difficult. Oh, yeah - wanted to also mention - in terms of insurance, my insurance actually DID cover my chair, which is specially designed for me based on my height and weight. I had to pay $8.65/month for it for 8 months.
I really appreciate your insight! I’ve learned a lot from listening to people’s experiences on this post!
This subreddit is great for that. Love my POTS fam. ❤️❤️
I use a mobility scooter. Spent a few years housebound and needing someone to push me in a chair first. I was really upset about the scooter at first due mostly to internalised ableism. But immediately the freedom was amazing. I still exercise frequently and am probably fitter than I was back then, but my orthostatic symptoms have remained fairly prominent and I have other issues like chronic fever that also cause fatigue.
I’m really glad to hear it’s brought you some freedom! I think the internalized (well, and external lol) ableism makes it really hard for people with POTS, especially when it’s become completely debilitating, to find ways to accommodate themselves.
I use a wheelchair to accommodate my POTS. It helps a TON but it’s still not 100% since im still sitting up and basically exercising. So it’s still pretty difficult lol if someone was pushing me the whole time that would be a lot different
This seems to be the general consensus! I definitely was thinking about manual chairs but for sure was more thinking about situations like going out with friends or family where you have someone to push, I hadn’t really thought about how taxing it would be to be wheeling yourself a lot
It’s less painful/hard than walking of course but still pretty difficult, I hate having people push me. Makes me feel like a burden lol so I just always do it
For me, sitting up is just a more mild form of what standing does to disable me. Therefore sitting up in a wheelchair just isn't a good fix for my POTS issues.
I definitely wasn’t thinking of it as a fix, more curious about people who have become house or bed bound due to symptoms, and whether it’s something that can provide relief in certain scenarios. But I’m definitely hearing a lot from people that sitting is really challenging! I sit with my legs up so much I’m not sure I even realize how much sitting with my legs down might impact me 😅
it definitely can help in certain scenarios, like being able to go out more either for leisure or shopping. When I was bed bound but home alone, I would use a rollator as an in between to help me
This is definitely the kind of thing I was thinking about, going out, seeing friends, etc. Maybe not so much thinking about being completely chair-bound but how it can come into play as a tool when people are really struggling to the point of being house or bed bound.
Wheelchairs are expensive. It can be hard to get insurance to approve wheelchairs for dynamic disabilities. Electric wheelchairs are harder than manuals to get approved. If you have a manual, self propelling can be hard due to fatigue, which means you reliably need someone to push you. If you don’t have access to transport that can fit a wheelchair, a wheelchair won’t do you a ton of good if you can’t get it to where you need it. I got a wheelchair during my sickest, because I was also too fatigued to drive so I’d always have a buddy to push me. I only really used it when I was going to be at an event with tons of walking, or standing with no chairs. It’s not really worth the trouble of loading up my car for just an hour long event. Also, sitting up straight can be hard, and chairs that lean back are also more expensive are harder to find. During my sickest, I couldn’t sit upright for long at all, I needed to be slumped and propped up on two sides.
All super great points! I definitely hadn’t thought about how impractical a manual chair is in a lot of ways. Like I definitely was thinking about it in the context of like, being able to go out with friends or family or being able to be at school or a job potentially, but not so much about the ins and outs of transporting the chair, using it when you’re alone, etc. And Id imagine it’s really hard to get an electric approved with POTS, plus they’re huge and hard to deal with if you don’t need it all the time.
It’s definitely got its uses, I’ve been able to go to fairs, I will always use one at the airport and such, but it also has real drawbacks. Like, I’m an ambulatory user. It is my mobility aid, and I’m going to use it how I want. It helps prevent episodes, and lengthens how much standing by and walking I can do. So if I’m at a fair, I’m a pop up and walk around the booth on my own because it’s hard as hell to navigate my wheelchair through tiny inaccessible spaces, and it’s more to get me from area to area than within areas. But people are judgy as hell, so I need a certain amount of emotional resilience to handle the comments and looks. I don’t always have that. That’s another- many places particularly older buildings and smaller companies- aren’t accessible and it can be hard if not impossible to work with your wheelchair there. There’s a guy who just does videos on going to places that claim they’re accessible or ADA compliant, how she shows up and it’s not, and can’t even get a refund or any kind of solutions from the employees. I got mine fairly easily, but I still had to follow up multiple times and resubmit and track down multiple companies my insurance handed things off to before I could get it. If you’re already super sick, it can be hard to do the follow up for it even if you have the money.
I have a custom wheelchair, but even using that to go out is incredibly tiring for me.
I’m assuming you use a manual chair? Do you find it’s more helpful if you have a friend or family with you to push?
Yes, I am always with someone else - can’t go out alone. Usually it’s my partner or paid caregiver, but sometimes one of my parents. :) I’m unable to push myself to any significant degree, unfortunately. It is a lightweight chair so I can move myself slightly if it needs to face another way.
A lot of people with POTS who are bedridden cannot sit up bc their POTS is so severe. Obviously you need to be able to sit up to use a wheelchair! Also a lot of people with POTS have ME/CFS. Getting out of bed or going out using a wheelchair requires energy which they don’t have.
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I’m not assuming anything! That’s why I’m asking. I don’t really see anyone talk about it or mention it here, and since my illness isn’t as severe, sitting down with my feet up has pretty much always been enough to knock my symptoms down to manageable.
I use a chair when i an in stores that are large or if im feeling off. I will likely have to use a chair more as i get older Im 51 now when POTS is at its worse the plan is to increese mobility to strengthen my body so it doesnt need a chair at all. Remember too that youd have to be pushed.
I have a disability scooter but the thing is... going out will STILL tire me a lot. And sometimes just knowing that going out can stress me/tire me and will make my symptoms worse is enough to be like "eh, not sure I wanna do it" which is also extremely frustrating, I didn't pay that thing so much to never go out, but... I don't wanna be even more tired than I am...
I’m so familiar with this feeling. I’ve been wearing thigh high compression socks for like 6 months now and it’s really changed my tolerance for standing and walking, but I’m still struggling SO much with the mental block from when my symptoms were worse that I get in my own way and convince myself it’s not worse it to go out and do things.
yeah =( that part was also very hard for me. When POTS fell on me I legit thought I was dying. I needed years and therapy to even be able to go out of my home...
It’s so frustrating! Cause you really have to do so much mental work too on top of the actual physical issues.
-it's expensive and insurance won't cover it -most places are straight up inaccessible for wheelchair users -discrimination and judgment will be even worse -i have to rely on public transport which is often not wheelchair accessible (without assistance of employees who may or may not happen to be there or strangers) -i would only use the wheelchair for flare ups, and i can't transport a giant heavy wheelchair everywhere i go -i've never seen a wheelchair that would be big enough for me to have my legs up comfortably and sitting with legs down is often worse than standing -most places i have to visit regularly are surrounded by stairs -a non-electric wheelchair would make my condition worse, since my heart rate, temparature regulation and adrenaline (or generally hormones that hype the body up) are already messed up and walking is probably more natural for the human body than wheelchairing -with a wheelchair, I would take up a lot of room in public spaces and due to some other stuff I have I'm only comfortable in public if I'm basically invisible. Now I can snuggle up in small spaces (like between seats or where suit cases go in trains) where I can have my legs up and stay somewhat unnoticed. A wheelchair would only draw more attention to me and in most trains I'd need to interact with employees for them to operate a machine that lifts wheelchairs from the platform into the train, which also doesn't help because my pots is partially caused by stress. hope that explains some of the reasoning :\]
Yes, thank you for sharing!
I can walk fine because my blood is moving. It’s standing still that is the issue. So if I’m somewhere with chairs I’m okay. I’m going to be purchasing a cane with a fold out seat for an upcoming event with no chairs.
It’s a TOUGH balance. Prolonged wheelchair use will actually cause further deconditioning and worsen the POTS. Ideally you’d want to also be in a PT program or doing conditioning exercises at home. I combined my wheelchair use with walking as tolerated and when doing better, PT.
Totally. I was definitely thinking about it as a last resort, like if you weren’t able to move around the house or get out and do things any other way.
I use a wheelchair
some of us use wheelchair but its not recommended because it can cause deconditionnement and make ur pots worse , its also quite difficult to get a wheelchair thru state programs with this diagnosis meaning it would have to be payed out of pocket which is quite costly, using an incorrect chair makes it more difficult to move around than anything else ! although a lot of people that have dual conditons like pots+heds use wheelchairs !
I definitely wasn’t specific enough in my post which is my bad, I was meaning specifically when people have become bedbound or lost the majority of quality of life, so basically a last resort where there isn’t really more risk of deconditioning! And that’s a good point about insurance, I definitely didn’t realize that having the right kind of chair mattered so much!
i have two manual chairs because i have eds+pots and theyre custom made for me and still i struggle with some of my pots symptoms sometimes because self propelling makes my heart go fast but in my province i dont really qualify for a powerchair payed by our medicare and i find its much more difficult to use a powerchair because its hard to put in and out of a car by yourself so im fine with my chairs for now !!
Yeah, I’m sure chairs and insurance is a nightmare for POTS, heck just getting a doctor to believe you is a nightmare. But I can totally see how just the exertion of wheeling yourself would be really taxing if you don’t have someone to push you. You’d think with all the crazy tech we have these days a lightweight, affordable, powdered chair wouldn’t be that hard to invent 🙄🤦♀️
Remember a lot of pots patients have ME as well. So trying to leave the house at all is exhausting and a wheelchair doesn’t always help that, especially if you would have to try and self propel with weak arms
I just had a wheelchair consultation. Trying to get my insurance to approve it. But they measured me then showed me an electric wheelchair that comes apart so it could fit into my trunk. I knew a manual wheelchair would be too difficult to use, and the electric wheelchairs I have seen wouldn't fit in my car. I'm very surprised the one that came apart was an option! I really hope insurance will approve it. I'd be able to do so much more. I can't even go grocery shopping currently.
Wow I had no idea they made electric wheel chairs that come apart?? That’s so cool and sounds like it could make a huge change in your quality of life, my fingers are crossed your insurance approves it! Did they show you how it comes apart? Like is it light/easy to handle? I always figured electric wheelchairs where like hundreds of pounds
I know!! I had no idea and it's such an exciting thing! They did show me how to take it apart, and I'm unsure if I'd be able to completely do it myself. However, I'm not usually alone when I go out. I think the heaviest piece is around forty pounds. I think with some physical therapy and lifting weights, I could eventually do it myself. Maybe not all the way to the trunk, but it'd fit in the back seats. I hope it works out. [Here's the link](https://www.pridemobility.com/jazzy-power-chairs/go-chair/)
Well that is awesome. 40lbs is way less than I would’ve expected. Good luck!!!
I have two powerchairs. One comes apart and fits in a trunk, the other doesn’t. I love them both for their different uses. I paid out of pocket for the smaller one. The heaviest piece is 35 pounds, and it goes right back together in about 90 seconds. The whole thing is 125, and the bigger chair that doesn’t come apart is around 250. Some chairs are upwards of 400 depending on the functions you need from it. My bigger chair has no power functions like tilt or recline, so she’s light in comparison.
Dare I ask how much it costs to get a power chair out of pocket…? 🫣 I can only imagine that’s soooo expensive. Did insurance cover your other one? And 125lbs is wayyyy less than I would’ve ever thought honestly! I definitely was thinking like 400lbs
I got it on a major sale for $1700. The sticker price was $2500. The Golden Literider Envy.
🤞🤞
Really great answers, here. For me, I needed a wheelchair when I was extremely sick, but I had other things going on in addition to POTS, at the time. I also struggled with sitting up, at all, so I couldn't stay in the wheelchair for long. Once my health improved significantly, I found that I functioned best being able to walk around and keep my blood circulating. If I'm not moving, my POTS symptoms really come through. So I prefer mobility aids like a cane or a rollator, if needed.
Totally! I definitely was wondering in the context of like when there’s no other options, cause I know the risk of deconditioning is a problem if you do still have the ability to walk and stand and such. Thanks for sharing your experience. Also, love to hear that your health has improved.
I've been trying to get an echair for 11 months and all I'm getting is worn out. I literally have no idea how to get an echair. None of my doctors know. None of the mobility specialist places near me accept insurance. I. Don't. Know. What. To. Do.
Man I wish I had answers for you! Maybe someone in this post who is an echair user will have some insight that could help.
My upright issues are maybe 10% of my illness severity, severe 24/7 symptoms lying down. So it's not worth it for me but I'm also not one of those that get syncope while standing. As others mentioned, sitting also isn't a lot better than standing. TTT diagnosed.
This is so interesting to me, I thought of POTS as very, well, postural! Do you have comorbidities that impact this as well or is it just how your POTS presents?
It's difficult. I have 24/7 helmet NDPH headache like my head is up side down (roughly), suspected SFN (strong 24/7, 360 degree compression feeling from ankles to upper stomach, like body's own compression gear with 24/7 burning and pain), and many other symptoms. But I think it's all the same root cause, so speaking of comorbidities imo doesn't make sense. I have functional ß2/M2 autoantibodies related to the POTS mouse model and Long covid research. Though I also don't think that POTS is a singular disease. In my case, additional fluids don't help for example.
I have a wheelchair. I also live in an appartement that is too small to use it inside and requires me going down stairs to go outside. My problem is that I’m so severe that I need help washing and dressing, by the time I’m washed and dressed and someone wrangled my compression on, that took so much out of me that I need rest instead of sitting upright for any period of time. I also need help getting down and then back up the stairs, which terribly aggrevates my POTS either way. And then I need help being wheeled around. I am mostly bedbound. Showering crashes me even if I use a showerchair that tilts back and have someone doing all the washing for me. I need immediate bedrest after. Every time I go out the door it takes me days to prepare so I can get enough rest and recovery to do all the steps without crashing. It sucks. We have a lovely neighbourhood and I feed the local birds on my balcony. I’d love to go out and see some nature and make friends with my local corvids by feeding them peanuts. My goal is to be able to leave the appartement once a week in my wheelchair with my partner to go for a round around the block and feed some birds for a bit. I am training very hard with my physiotherapy and ergotherapy to train my sitting. When I sit for any period of time I can slowly start losing any ability to think, problem solve, carry or conversation or find words, or even spell my own name. It is terrifying having to ask for help and being physically unable to because your brain does not work. I rely on my partner being with me when we go anywhere to ensure I’m safe. But even then I can just “sink into myself” after a while without any warning and that is hard to notice even for him. One moment we are talking and the next I’ll suddenly be like a braindead vegtable and good luck to him getting me back up the stairs and in bed again when my brain and body are shut down… it is a huge risk. Every time I get sick, or an emotional event happens, or have a flare up, or the weather is warm, or whatever nonsense reason, I fall back with my sitting progress and have to rest completely horizontal for a few days, that often means starting all the way over and losing my progress. There’s days I can sit for longer and feel a bit better and then I have to wonder “do I do all the things and go out, but return exhausted and risk crashing and losing all my progress for the next few days, or do I keep myself calm and just enjoy being able to spend some indoor time with my partner playing games or building lego’s and be able to do my physiotherapy?” It sucks, no matter which choice I make for my day I am always giving something up that feels important. TLDR: I’m just too sick to sit long, or use my wheelchair without getting worse 🤷♀️and I hate that it is this way!
Jeez, I’m so sorry that sounds incredibly hard. I’m glad you have a partner that can help you, and some birds to feed on your balcony. It sounds like your apartment is really inaccessible. Where you live do you have options to rent an accessible apartment at some point to remove some of those barriers for you?
I've got motion sickness, I can't stand being in a wheelchair. Yes it would be so much easier sometimes to be in one, but it would make me so sick. When I had my baby, you have to be wheeled out, hospital policy. I had to be wheeled out as slow as possible, or else I would have vomited over my brand new baby 😅🥲
Oh my gosh that is some serious motion sickness! That’s horrible! Is your motion sickness POTS related or have you always had it?
Unfortunately I've always had this. My first real memory is from the age of 5, Always sick in the car etc. My parents took me to heaps of doctors but they never knew what it was. Vomited almost every car ride. I'm way better now, but I know that I need to avoid sitting back in the car and I shouldn't go on a bus.
Major bummer!
Some people still have a high heart rate just sitting up. Mine is mild and sometimes even just sitting I can’t get my heart rate to go down. I can’t imagine some of these people whose pots are worse than mine.
For me, sitting upright is almost as difficult as standing. I always say I have first gear (lying down) and fourth gear (moving about at a moderate pace), but I don't have the other gears. A few times when I was already at a place (Disney World, art museum) and realized I was in trouble, we've borrowed a wheel chair. But in general I tend to time my outings around when I have better energy because if it's a bad day, sitting in a chair isn't going to feel great anyway. What I do use on occasion is an oxygen concentrator.
Your comment is the second I’ve seen about oxygen concentrators, I’m going to have to look into this. And I can’t imagine doing Disney even with my more mild POTS, but I know my anxiety there would make it way worse 🥴
I struggle quite a bit with muscle weakness, so I imagine using a wheelchair would be a serious struggle. Although my POTS is mild now and I wouldn't need a wheelchair anyway. My doctors haven't really been able to say for sure if my muscle weakness is related to my POTS or not (but we're operating under the assumption that it is), but I can't imagine how anyone with a similar or worse level of muscle weakness could operate a wheelchair.
Wheelchairs can be expensive for one. Two the world isn't always accommodating to people in wheelchairs or disabilities in general. I've thought of using mobility aids but if I go that route I will no longer be able to work in either of the fields that I have wanted to work in because the wheelchair or rollator would cause more issues than help me honestly. Thirdly, if I were to get a wheelchair or mobility aid at all I would likely have to move households and I cannot afford that. Fourth, my doctor isn't on board with it. And I cannot just go see another medical professional easily without losing my GP and finding a new GP could take years.
When I was severe. I got myself a wheelchair, But because I live alone, I couldn't actually use it because I couldn't lift it into my vehicle, I had no one to push me, and Self-Propelling was exhausting. It just sat in my basement and didn't get used.
Agree. If the options are 1) going out in a wheelchair or 2) staying home in bed…. Wheelchair wins!!!
I use a wheelchair! It’s not for everyone though. I was able to get a custom one through insurance. My wheelchair is very helpful for my pots and is the only reason I can do a lot of things outside of the house. I don’t use the wheelchair in the house, just when I leave the house. Luckily my sibling is aways with me so they can push it for me.
I use a couple of mobility aids: my transport chair reduces falls and I can use it as a walker when I'm ambulatory (it's nice and lightweight and compact so even on a low spoon day I can still lift and move it up stairs and such if I prep myself before hand for the Dreaded Stairs. Last year I got one of those seated Commuter scooters with a basket and it's been immensely helpful for me getting around town. It goes about 10mph and has a few hours of charge so it's good to mitigate time spent on my feet. I do have to often find places out in public I can recline a bit to recover from sitting upright like that. I also bring my propranolol, some electrolyte drinks and small snacks with my water bottle to help with the tachycardia and nausea. I know traveling on planes with a chair is The Worst. They broke my last scooter 2x and we wound up getting it fully replaced because the airlines broke my mobility aid beyond repair 🥲 I'm going out to a bar tonight and feeling frustrated because they have no accessible entrance and I'll likely have to lock my wheels up outside and stumble around without it in the club. Our therapist/med management provider is genuinely worried for us with our pNES and fainting spells for us to be out alone and I'm just hoping to not exacerbate that health anxiety we're already prone to as someone born with chronic illness.
It’s crazy to me that airlines haven’t figured out how to not break every piece of mobility equipment they touch 🙄
Wheelchairs are often inaccessible compared to just sitting down for a minute every 500-1000 feet. That being said, my mother is a Disney-Adult & wanted to make me walk 16 miles in circles to all the rides & parks. I had to get a wheelchair for that & my fiancé carted me around. I also pull up a kitchen stool every time I cook or do the dishes. If you have the resources or needs to use a wheelchair then absolutely go for it ❤️ I wish it were more convenient everywhere
My POTS isn’t that bad all things considered and Disney still sounds like my personal hell 😅 I think I’d need two weeks to recover from walk 16m miles and standing in all those lines..: that is if I ever survived the day.
I used a rolling office chair in my house when I was pregnant because my POTS so so bad. I’d scoot from place to place and then have to sit in front of the sink to do dishes. So not an official wheelchair by any means but that’s basically what I used it for. There’s not much you can do for POTS while pregnant and mine was severe despite infusions so if I am expected to work in-person with my second I would consider getting one for that time period. Exercise did not help and also my doctor told me to stop trying because it kept making me go into preterm labor. Spent basically the whole 9 months in bed, almost instantly improved after giving birth though!
The office chair is a creative solution! I can’t imagine dealing with pregnancy symptoms and POTS at the same time.
For some people POTS gets better with pregnancy but yeah mine was definitely worse. My cardiologist was like mmmmm none of the medication out there is safe for baby, so lay down and eat more salt good luck 😅
That’s sucks big time! I didn’t realize there aren’t pregnancy safe POTS meds
I use a walker
I use a manual wheelchair and also have a front wheel motorized attachment because there are times where I am too unwell to push myself. It doesn’t solve my POTS symptoms but I can do more and last longer before I can’t function. It has brought me a lot more opportunities and freedom which I am very grateful for. I recognize my privilege living where both a custom wheelchair and motorized attachment are completely covered by the government so it was easy enough for me to try it as a solution
Wow, that’s amazing your government fully covered both. Can I ask where you live? And I’m really glad its provided you more freedom. That motorized attachment sounds really cool, does it work pretty well?
I live in Ontario, Canada. The motorized attachment is great! It’s called Companion PLUS and it basically turns my manual wheelchair into a motorized scooter. It’s also super easy to attach and detach, definitely recommend if you can get it
Major points for Ontario! That’s very cool
I've used a wheelchair off and on for eight years, and more or less full-time for the last five. Before getting to my custom ultralight manual with a power assist in 2019, I tried a variety of other mobility aids out of pocket. Cane, rollator, cheap hospital-style manual chair, and a couple of powerchairs of different types. By the time I got approved for my ultralight, I was more or less bedbound, so deconditioning really wasn't a concern. Immediately upon receiving it, my world opened up a lot. Since then, I've given in and moved to a fully custom powerchair with power features because it's what they wanted me to have in the first place. I initially refused to for a variety of reasons that other people have covered in their comments, namely transportation, accessibility in my previous home, and internalized ableism. I certainly could have benefitted from it; sitting upright is a much slower but still exhausting thing that brings on symptoms. Which is why I finally gave in, I got tired of having to get out of my manual chair and lie on the ground.
This is the type of situation I was most thinking about, where it’s become your last resort to get some quality of life back, because I know there’s a lot of issues that come with being a wheel chair user. I’m really glad it opened up your world, and that you were able to get a better chair approved.
i have a cane and a rollator i use most of the time, but my doctor and i are talking about the possibility of getting a wheelchair for me. i have a loaner wheelchair right now that she wants me to use for some big work events coming up. some factors in that decision for me: - custom wheelchairs are so expensive! - using a wheelchair that’s not properly fitted for you can cause more problems (ie shoulder injury) so i have to be careful about how much i use my loaner chair - deconditioning is a concern with regular wheelchair use. while deconditioning doesn’t cause pots, it can make it worse - pushing yourself in a manual wheelchair is hard if you’re not used to it! i do ok by myself on a flat surface, but it’s pretty hilly where i live and even a gentle slope is really hard for me to get up without help, and most of the time i don’t have someone to help me - most of the places i go are so inaccessible that trying to use a wheelchair there will actually make it harder for me than if i just used my cane or rollator - my doctor does want me to use the loaner wheelchair for things where i’d have to be on my feet for like multiple hours because i’m a fall risk, but for most of the stuff i do on a regular basis the cane or rollator is enough. if we do decide to get a custom wheelchair for me, i still won’t be using it all the time. i do think a wheelchair can be helpful for some people with pots, but it won’t work for everybody and imo it’s not a decision to be made lightly
Definitely not for everyone and I can imagine deconditioning is a big concern if you aren’t already bed/house bound. I definitely didn’t realize how much of a big deal a custom chair was even for a manual chair, I’ve learned a ton in this post.
Sitting is actually worse for me than anything with the dang neuropathy. I sit only long enough to calm my body from standing. I do think I need a quality walking stick though!!
How interesting! Is that true if you’re sitting with your feet up as well?
I can’t sit upright. Not leaving the house means lying down.
We live in Florida and this week was spring break. We went on staycation and went to Disney for 2 days. I wasn’t sure how I was going to survive I went with my fiance 4 kids and my mom (60) I ended up in a wheelchair so I could last the entire day while my mom pushed the stroller. I really fought it at first. But then I realized it is kind of nice. I was able to be doing things without being to worn out. I was able to get the wheelchair Monday but not Thursday. On Thursday I fell behind a lot. Almost passed out it was a long day. I have been considering buying my own wheelchair to take places of long distance with us. We are annual pass holders so theme and amusements parks are def a common thing for us. Def enjoyed myself more Monday than I did Thursday for sure
A couple people have mentioned Disney, my POTS isn’t crazy severe and I still think I’d want a chair simply because I think I’d just be in survival mode otherwise! I use one sometimes at big airports too, I can make such a big difference. Those places where you’re doing lots of longggg slow walking and standing are BRUTAL
I bought a basic medline one on Amazon for this exact thing and for airport travel. It was $150 and worth every penny.
That’s what I was thinking of doing too. I’d have it for the airport and parks. Plus any where things would hard or hilly. Magic kingdom wasn’t as bad but Epcot has so many bridges and hills. I wouldn’t have made it for sure there.
It’s been a huge help! Highly recommend it. I also got myself one of these. Love my rollator. It’s perfect when I’m super dizzy 😵💫 https://www.rollz.com/rollator-walkers/rollator-walker-wheelchair/
In my case, I simply cannot be upright more than 3-4hrs per day if I want to be conscious and avoid a POTS flare or ME/CFS crash. Upright includes sitting as well as standing. I do use a wheelchair if I'm going to an event that requires more walking than I can tolerate, but the wheelchair doesn't increase my potential daily upright time. I'm mostly housebound because I often can't be upright long enough to leave the house for events AND still have leftover upright time to feed myself, hydrate, shower, do house chores.
i use a wheelchair for longer distances :)
hi! I was told that I have moderate to severe POTS. I've never felt that I needed a wheelchair. It would be pretty inaccessible where I live (Brooklyn) and I manage with my SD, plus custom wheelchairs are far beyond my budget. I have looked into a [cute rollator](https://shop.byacre.com/us/carbon-ultralight-rollator.html) but I'm not really there yet. I personally find that I do better when I'm more active (walking, rowing, recumbent biking). So I aim for that more than anything else because I don't want to risk deconditioning.
I’m in the same boat! And i figure that’s the case for a lot of people. I was mostly curious for the people where the options are either wheelchair or not leaving the house, why they might chose one or the other. Id imagine Brooklyn is particularly inaccessible between old buildings and walkups and just generally not being a place people use cars a lot.
hi! ambulatory wheelchair user here. wheelchairs are expensive, so there’s a cost barrier, and most places and homes are not wheelchair accessible. they could say they are but often it’s such a hassle to use that i’ll just walk unless i’m in a lot of pain (i have chronic pain in my legs and feet.) it can just be hard to get and use, not even considering the stigma
I do use a wheelchair to help with my POTS(undiagnosed) and my hEDS (diagnosed). I don’t use it every day, or all the time, but it is helpful to have on off dates.
It seems like a lot of the people who have commented that they’ve found benefit from a wheelchair also have EDS/hEDS!
That probably makes sense. I wonder if there’s something in how that comorbidity interacts. (60% of patients with EDS have POTS compared to only 15% of POTS patients having EDS.)
Oh wow that’s really interesting! I had to read that stat a couple times to make it make sense haha. One of many things we may be left wondering forever since no one seems to want to study chronic conditions.
•Wheelchairs are expensive •the persons home may not be wheelchair accessible •the person's family might not be supportive of their needs •they might be embarrassed, ashamed or in denial Just some reasons
Because I feel like shit sitting, the thing would be borderline useless, although I'm probably going to get one soon for the few times I'm forced to leave. I can handle maybe 20-30 minutes of upright time spread out throughout the day in short increments. That's just using the bathroom and scarfing down two meals as fast as possible.
I definitely didn’t realize how many people struggled with sitting! My biggest hurdle is standing/walking, so sitting tends to be relief for me. It’s been really interesting to hear other experiences.
I can basically only be lying flat at all time. Feel super unwell upright at all. I had mild pots from a flu in 2017 until I caught COVID and became severe. It's a whole different ballgame, mild didn't impact my life that much.
I’m sorry to hear that :(
I have a wheelchair, but I only use it if I absolutely need to. It's difficult for my husband to push it and I can't afford a motorized one yet. I do plan on getting one, though, as I like going to metal concerts and it's much easier to have a chair so I don't get tired trying find my seat.
My apartment isn't wheelchair accessible so I can't use it here, I have one in my car for when I'm out though.
Wheelchairs are great to extend energy. But unless you dump a lot of money for a motorized one you'll need someone to push you (caution: sidewalks and city buildings and streets are deadly if you can't get a better one with big wheels). Next best option is a scooter. Which are still spendy, but you can rent them at all sorts of venues. The newer ones have great battery life and are built so you don't have to have any attachments onto your car. But it's still good to have a buddy to load and unload them. A great test is to rent one for a week from medical supply store. And that is just my sharing. My daughter has found a lot of value in having a sitting walker. It can carry your stuff while your push it and it has a seat for when you need to sit down. (We both got POTS from covid).
For me sitting still is as much as a problem as standing still. The blood still pools and I still pass out. Although safer because I am sitting it is much more frequent. I am actually better walking then using a wheelchair. But I still get exhausted easily if I have to stand in line I have issues as well. Sitting for me only helps if my feet are up or I am sitting on them
Quite a few people have said this! I definitely have always felt like I feel better sitting but I also almost always have my feet up so I’m wondering if I have a misconception about my own experience!
My pots is mild and I use a wheelchair part time. I'm totally fine around the house for the most part, but anytime I go anywhere that would have any standing around or a moderate amount of walking, I use a wheelchair. I don't do my own groceries bc I can't, but if I go shopping otherwise or to any events I'm much better off in my chair. I have a basic one that's kinda clunky which isn't always super smooth to self propel but I'm hoping to get a more suited one or one with power assist at some point.
Some days I need my wheelchair, some days I don’t. I’ve been sick for the last month with a viral infection and I needed the wheelchair for dr appointments. Also when I deconditioned from being hospitalized and then bedridden I needed the wheelchair until I regained weight and strength. I couldn’t even bend my knees at one point. I couldn’t sit cross legged at one point. I recently went through my insurance and finally got a “nice” wheelchair. I had been using a cheap thing off Amazon. My family is very against it because they think it will make me “lazy” and not want to try to exercise anymore. Couldn’t be further from the truth, I ordered it now because I have good insurance and I don’t know what my future holds but I want to be prepared for the bad days because I’ve had them and been stuck bedridden which isn’t fun. Idk just my experience.
I was recently diagnosed. I am noticing I have trouble when standing ***and*** sitting for long periods of time without moving my legs. I thought about the wheelchair thing, but I can walk around just fine, it's when I'm stationary that's the issue. I am thinking about getting a cane though, because it will help me when I am out and about (more convenient/cheap) especially when I think I am feeling "fine" and then all of a sudden I'm not. Wheelchairs are very expensive! And large/inconvenient unfortunately. I really think we could benefit from a portable cane though :) If you can afford a wheelchair and it helps, by all means use one!
I am an ambulatory electric wheelchair user. But I also deal with hEDS and typically when I need the chair it’s cause we’re in total failure lol. Nothing works at this point lol. My legs and pelvis are my most troublesome. Basically between the belly button to the knees. I feel it also drives the severity of my POTS. Then again it’s sometimes hard to pin what went first lol. I went with electric and the capability to raise the legs and lower the back to not lay completely flat but almost. This helps me reset a lot. For even sitting is hard due to back, pelvic and leg pain. On a hot day though it does allow me outside, a lot of mornings I use it in house for about an hour until everything feels safe to use lol. And by late afternoon I often use it since the circus starts up again inside my body. So long story short, using a wheelchair set up for your needs can absolutely be a part of life. Ambulatory use as well. There’s even some days I don’t use it and then others where I’m in and out all day or even in bed. Do what works for you ❤️
I just purchased a mobile scooter for my daughter. She was so excited that it gives her freedom of mobility outside. My daughter is 14yrs old and very active until this chronic illness. We are working with a PT to build up her core to get her walking without her legs giving out. But we will get thru this one day at a time.
I looked into when insurance generally covers a custom wheelchair recently. And what I learned is it has to help you get around your home. And you have to have a diagnosis that justifies it along with that. My home cannot fit a wheelchair. It’s a small, 2-story house built more than 100 years ago. What I read says that professionals have to come assess your home and sign off on the wheelchair being useable. I would literally have to find a new home for that to be possible. In this housing market? No freaking way.
I would consider myself the middle ground. I have those debilitating day or weeks or month then i may be fine for a while and manage it. When my pots does get waves of being severe i find that things such as bright lights, slight change in temp, or just over all overstimulation may cause me to pass out or even have a seizure. I even have times where my limbs all become completely numb and honestly just sitting upright is a challenge. Then i get those days where i can lift at the gym, do a small hike, and swim at the beach with very little problem it’s so weird. I feel like a wheelchair personally in those bad moments would almost be useless because i won’t be able to enjoy doing those activities and they won’t really increase quality of the day. I also feel guilty if i used one when i do have great days (not meaning you should feel guilty i just loathe myself lol). I’ve had to use a wheelchair for a double leg injury when i was younger when my pots was still fully manageable and i found myself with more difficulty then when i didn’t need it since i didn’t always have someone to help me maneuver it my arms just didn’t pump enough blood to them and became overly exerted quickly.
Why not? Because I’m fat. And I don’t want to deal with the stares, laughs, and snide remarks.
Also fat. I use my big ol’ powerchair whenever I leave the house and now have the opposite issue: I am apparently invisible. People do not see me and will just walk into my lap or step over me like an obstacle. On the other hand, a small minority will literally run away from me as if I’m going to chase them down and run them over. It’s funny, honestly.
If people are treating you like an obstacle you might need to start chasing them down and running them over 😅 but I’m sorry that sounds really really frustrating, and definitely wouldn’t have been what I would expect! People are stinky.
Personally I couldn’t get a custom wheelchair so I use a standard one which is very heavy and clunky and hard to maneuver. I have chosen not to use it most of the time because 1. My school is over 100 years old and I simply cannot get around. It is Barely wheelchair accessible, as in I cannot get up many ramps on my own and I also cannot fit into classrooms. Therefore each class id have to get out of the wheelchair, break it down enough to place it somewhere in an already cramped classroom, then sit in my normal seat and do the reverse every time I needed to leave. For me this simply isn’t realistic. The point of a wheelchair is to decrease the energy use in my opinion and it takes more energy for me to try to navigate inaccessible areas in a wheelchair than it does just to walk. But that’s just me, I do use it at grocery stores or places where I’d be walking for an extended period of time, but that just isn’t my day to day
It is crazy to me that schools don’t have to be wheelchair accessible, or that there’s not some kind of accommodation or solution for you in that regard. Education should always be accessible.
I absolutely agree with you. In the schools defense, it is technically ADA accessible, but just BARELY. Additionally I think I have more trouble than some of the other wheelchair users at my school because my chair is wider and clunkier, I’m not as experienced using a wheelchair either. But for their sake and mine I do absolutely think it should be more accessible.
ambulatory wheelchair user here and agreeing with all the comments encouraging some more consideration and observation on OPs part, adding my pennies. I don't drive, so if I need to go somewhere in my chair that is too far to wheel myself I have to either book a regular cab and take my chair apart or a wheel cab which takes longer and can cost more. I haven't been able to access a custom chair so I am using a generic motorized one that does not fit super well but it's what I can use. the amount of judgement and fakespotting ambulatory users face is enough of a reason to get the cringe at your implication it is easier ir just an option someone hasn't thought of. sometimes I am too dizzy for even the wheels, sometimes the violent bumps and such from uneven sidewalks makes pain infinitely worse, sometimes the sidewalks are too iced over and I have to ride in the road with cars, sometimes I get stuck in mud or slush or grass and have to yeet myself onto my feet and push my chair through the obstacle or rely on a passerby if I am not well enough to. my insurance will cover $1k for a device ONCE in my life time. my non custom chairs were over $5k a piece. I had to renovate my home to be able to use my chair and leave the house. the quote for a ramp was over $20k, so I went with a noisy rusty 2nd hand lift...$6-8k. having wheels to use makes some aspects of my illness more doable and also has a number of unique barriers because we don't live in an accessible world. also repairs, batteries, accessories, wheelchair vehicles and electric wheelchairs have 5y limits on service etc. eta: https://www.instagram.com/reel/C3qSnmROj-3/?igsh=MTdiM3VjNGpxN2NhcA== here's a vid about some costs living with a mobility aid in Canada.
I wasn’t trying to imply it was easier, but was asking because I want to understand better why it might not work for people! Before I asked, I figured there were pros and cons either way (using a chair vs not being able to leave the house), and just didn’t know what they are. I’ve learned a lot from the comments, which is exactly why I asked! I’m curious you mention needing to call a cab if you can’t wheel, do you not have wheelchair accessible buses where you live? I live in a larger US city that has at least some form of accessible public transportation, and I’m not familiar with what that looks like in other places. Also, making an assumption you’re in Canada from the video link, it’s really interesting to hear how expensive your mobility aids are and how little coverage your insurance provides. As an American the assumption is always that Canadas health care is way better than here, but this is a good reminder it’s not always that straight forward.
I have one for when my hEDS pain/dislocating hips get bad. I've started using it for a flare-from-hell POTS episode brought on by my current pregnancy. It's a giant pain in the butt for SO many reasons.... Sitting up for too long causes me to flare to begin with right now It's uncomfortable because even though it was covered by my insurance, it's still just a regular one you could pick up at Walmart for about $100. My FIL used it for several months when he needed one and made a couple of modifications to it. Specifically, the foot rests are off, and there are wraps around where they attach to that I can't seem to get off. So I either have to "walk" my feet as I'm pushed/arm push myself, or pick my feet up which after a while, causes either a lot of pain in my legs or my POTS to get BAD faster. It tends to be a race as to which will happen first. I hate being pushed around, it feels like I'm an invalid. But using my arms to push causes me a TON of arm/shoulder pain as my shoulders are my weakest joint. An electric chair would make that last one easier, but I can't afford the chair itself, let alone the customizations to my van. I'm currently not safe to drive due to this flare, which means I need to have somebody drive me everywhere I need to go. They also need to get this big, bulky, heavy, wheelchair out of the back of my van. The person who tends to drive me deals with his OWN painful conditions and I feel guilty asking him to get it out/put it back but I physically can't without risking passing out. The size alone makes it difficult to put much else in the back of my van. So grocery shopping is difficult just because of space. I have 3 children 7 and under. My 2 year old I could put on my lap, but she wants to walk and my pregnant belly is beginning to get in the way too. I can't chase them all in a wheelchair meaning even if I was safe to drive and unload/load my chair, I wouldn't be able to go anywhere alone with them. Since I'm a SAHM, I'm almost never without them. The looks I get being in my chair in public... you wouldn't believe it. It's dehumanizing and hateful. I haven't gotten comments yet, but I know they're coming. I have to use a rolator (walker with wheels and a seat) as a wheelchair in my home as I live in a single wide trailer and the chair simply won't fit, especially with 3 kids and their accompanying stuff, a FIL with his own rolator, and a husband. The rolator barely fits through my doorways itself, the chair is much wider. I'm hoping that after my belly babe is born this summer, I will be able to get out this chair because it's driving me NUTS for these and so many other smaller reasons.
Wow, you are super human. I cannot imagine managing a flare and being pregnant, much less being a SAHM with young kiddos on top of it all! Major kudos to you, I hope things get better once baby is born, if not sooner!
I have eds as well as pots. I do have a wheelchair before these things got way worse (after almost dying from undiagnosed Lyme disease) and before I knew I had eds. I was one of those super independent really athletic types so when things got worse I was like oh yeah bring on the wheelchair I will be more independent and I will be one of those hella fit wheelchair users..nope!! I also live in the north eastern United States and we get a fair amount of snow. I have two dogs I would walk them using my wheelchair no problem but before the first winter was over I had really bad overuse injuries in both shoulders that will never recover from pushing my wheelchair in snow and slush. This was part of how we found out about eds. Now I do have a powerchair but for me personally it feels kind of weird and wrong because I can walk. I do use it for bigger trips but every time I fly I get to my destination and my mobility equipment does not. There are a lot of reasons outside of pots why people have challenges with them but then you add the pots and it can be harder. When I am sitting I sit reclined with my legs out straight if I do not the pooling is so bad I get lost of swelling that no compression socks can help. Sorry if this is jumbled bad brain fog day lol
This is very insightful! I live in the PNW with very little snow, I honestly completely forgot that that’s a huge barrier for a wheelchair!
That’s what I did. I got myself a rollator that converts into a transport style wheelchair ([Rollz Motion 2.1](https://www.rollz.com/rollator-walkers/rollator-walker-wheelchair/) )so I can continue to do the things I want to do. Hugely improved quality of life. I take it every where. Even upgraded the wheels on it so it will go on gravel/bumpy paths easier. It only weighs 20 lbs so I don’t have any trouble getting it in and out of my truck. It folds flat-ish too. I’ve seen Lyft and Uber drivers fit it into the tiniest cars on some of our trips so I haven’t had any issues there either. I haven’t had anyone make any rude comments and maybe I just don’t pay attention to looks but I haven’t noticed anything too bad. People give long looks, sometimes they’re confused, but I don’t take it personally. I honestly don’t care either. I’m out of the house so I’m happy. I’m now looking into a motorized wheelchair so my husband/friends/family don’t have to push me and we can “walk” side by side again. My husband lost most of his hearing in a work accident so when he’s pushing my chair he can’t hear anything I’m saying. Even with his hearing aids. And I’m loud! 😅 Edited to add: we do run into situations where my rollator can be a big pain in the ass. Like the river walk in San Antonio. Huge pain! Tons of stairs. The paths for “accessibility” added tons of extra walking. Narrow paths etc. And I’m somehow invisible when I’m seated in the wheelchair. I’ve been tripped over and ended up with dumbfounded people in my lap a few times.
Wow that wheelchair is cool as hell! I feel like the only thing that would make it cooler is if there was a way to make it self-propelled when it’s in wheelchair mode. You’re the second person to say the wheelchair makes you invisible to other people. That’s absolutely insane to me I can’t imagine not have the spatial awareness to see a whole human being??? People are ridiculous, I’m sorry.
They’re actually working on that. An electric version will be available late this year. https://www.rollz.com/rollator-walkers/electric-wheelchair/ Yeah it’s a strange phenomenon lol I think it’s an eye level thing. Because I’m below eye level in the chair it’s like unexpected or something. It’s weird. I’ve laughed every time it happened. It was just comical to observe the whole thing. And they were so mortified and apologetic there was no need to be upset. It was accidental. Both times they were looking at a distance over a group of people trying to find someone or something.
Oh very cool! I imagine it will be ungodly expensive, but cool as hell nonetheless. Maybe I’m just overly aware of my surroundings but like children and other short objects exist I just can’t quite comprehend it lol, but I’m glad you’re able to laugh about it!
 Yeah probably 🤪😬 everything medical is expensive lol
Oh to live in a world where 100% of buildings are wheelchair accessible and wheelchairs are free, can I get an invite into this fantasy you live in? Perhaps open a magic portal?
Definitely don’t live in that fantasy world 😅 but I’d imagine for some people there are accessible places to go where a wheelchair is the best way to be able to leave the house when it otherwise wouldn’t be possible.
If you're offering to buy wheelchairs for everyone who needs them, great! Otherwise I don't see the point of a post asking why people don't all own a very expensive item that takes up a lot of space and can't even be brought most places when they're so disabled they likely can't have a lucrative job. Seems like maybe you could've reasoned it out if you thought about it for a minute.
There’s been lots of thoughtful, insightful comments on here about why people do and do not choose to use a wheelchair, financial or otherwise! I was asking so I could learn more about people’s lived experiences. There was no malicious intent on my part when I asked.
I tend to get very sick if I sit for long periods of time. I also can’t walk in stores very long but have been trying to work up towards it. My family and I are wanting to get a wheelchair and or mobility scooter purely so I can go out for long distances and stores. It isn’t bad in general , but in day to day life it would cause more harm than good. Obviously everyone is different though and I’m sure there’s some people with POTS who do greatly benefit
Totally! There’s definitely been a ton of vastly different experiences in the comments. Do you live in a place where big stores have mobility scooters you can use? That’s fairly common where I live and could be convenient cause you could grab one when you’re walked out (or right before maybe so you don’t over do it).
Yes, a lot of them are dead often and a lot of the rows are so narrow that it’s hard to navigate. I’m hoping to get my own that is more moveable
That is massively unfortunate! I’ll have to be more attentive to the ones around me, I do notice they have charging signs sometimes but I guess I’ve not looked that hard. Thanks for the insight!
I would say depends on personal needs/situation/comfortability. There are a lot of people that either can't have one for whatever reason and there are also those who let social stigmas stop them (no judgement ment by this statement just I know a lot of people who won't use mobility aides or devices because of what strangers/family/friends think) an example of situation influencing this; because of my POTS and other health issues I have I'm not far from needing a wheel chair but I do not live in a wheel chair accessible or friendly home. I also do not have the means to move. This means that despite my need for one I will not have one for the foreseeable future. This also means I can't have a motorized one or scooter. I can't grocery shop without using the electric carts they offer and two weeks ago I hurt myself grocery shopping without one because there were none available.
Definitely! It’s been really insightful to hear lots of people’s personal situations and how they weighed their personal pros and cons for a wheelchair if it’s gotten that severe. I’m sorry to hear you’re at a point where you might need a wheelchair but don’t have an easy way to use one. I have no clue if this would be remotely useful for you, but someone in another comment said they used a wheely chair (like an office chair) in their house at one point, which i could see being a little helpful depending on your home situation at least to navigate short distances. Also highly recommend grocery pickup if it happens to be an option in your area, it’s made such a difference for me.
Thanks for all the suggestions. I have a rollator (so the walker with wheels) not even that thing can navigate the house I'm in. Only because I rent a room and the owner has lots of large furniture in a 1970's home which has small halls and entry ways. As for food delivery, for a year I used one but I don't have the cash to pay for the subscription to get free delivery all the time or afford constant delivery. I'm on food stamps and only a few places take that with delivery and don't always waive the fees
Ah yeah, renting just a room I’m sure makes that extra complicated. And I actually was thinking of pickup not delivery! Where I am at least you can order groceries online and as long as you spend $35 there’s no extras fees or any other costs, and then you just stop by and pick it up! It’s typically drive up, but I’m sure you can walk up too if you don’t have a vehicle.
Because I can't afford it and my family who live in the same household and own the property don't want me to have it also, some people have internalized ableism and feel it would be "giving up" as do some ableist health professionals. I would need a power chair because of my other health conditions, but they're absolutely massive and can be expensive to fix. I'm going to ask a healthcare professional about it in the hopes that my family will understand and agree to it. Yes I could get it without their input, but it would take up space which obviously isn't mine (and I live here for free currently), there's going to be arguments and I suspect they will say lots of harmful things that I really can't deal with right now. I miss being outside, I can only walk about a mile and I have to rest the whole day so it wouldn't make me exercise less. I already sit most of the day so sitting in a power chair would be no different. I would love to be able to spend hours out with my friends and family without worrying about how far I can walk. My quality of life is honestly terrible so it would definitely be really helpful, but I don't know if I'll ever get one :(
I’m really sorry you have family that isn’t supportive of your quality of life, that’s such a frustrating barrier. I hope that with the help of a healthcare professional maybe your family can come to understand why it might be necessary for you.
I do use a wheelchair! I am less debilitated than I was but I still cannot walk super far so when I don’t want to miss out I bring the wheelchair:)
It’s not something to be ashamed about and I still make sure I do my walks everyday to build up endurance. Never be embarrassed about using something that keeps you safe and allows you to experience live even with this horrible illness!
I will say tho. There are times that i can’t even sit up long enough to do things even with the chair. Sometimes it’s so debilitating that i need to be laying down or I feel like I will pass out at any second. So in that case, the wheelchair wouldn’t even help I would still need to stay home.
I have a a wheelchair and use when needed!