I use wheelchair assistance in airports when traveling, but imposter syndrome keeps me from trying to use one in other spaces. I struggle so much standing in lines and being on my feet for prolonged periods, so it would probably help, but it's hard for me to feel entitled to that kind of mobility aid.
I use a Rollator with a wheelchair function! Basically when I’m alone I just stop and take a sit when in line. When I have a friend or fiancée with me it has attachments that pop down so someone can push me around. Best part is I got it secondhand for like $50
Me too! Best decision I ever made. Walker most of the time, but sometimes we use the wheelchair function for times when we know there's going to be lots of time on our feet.
It feels awful, like there’s no circulation. You know like when you’ve cut off your circulation, and that moment before the tingling starts? And my head sometimes pounds, and I’ll feel like I’m gonna go down.
Yes. Even as I’m wobbling along with my cane, I keep asking myself if I really need it. I guess that’s why I was so thrilled to have a NAME for all my symptoms! I don’t know whether to laugh or cry sometimes: my husband and I used to spar in taekwondo class, I used to be so fast! And now he’s running into me at home because he can’t wrap his head around the fact that I’ve lost the ability to move quickly. My brain thinks, move! My body doesn’t respond. I can’t tell if he thinks I’m being difficult, or if he gets it. I don’t think he understands. I mean, how could anyone who doesn’t have it? I still don’t understand.
I’m new to this, but I just bought a cane because it helps with my stability but also signals to people (at least the ones who care) that I may look fine, but I’m not. It saves me some anxiety in public spaces. It makes a big difference in how people look at you! I mean, before, I felt glared at for being slow, and now people smile at me and give me space. I made the decision after trying to navigate the airport with able bodied people crashing through not even thinking about how scary crowds are when you’re unstable. My husband kept getting way ahead of me and then looking back impatiently. Yeah. So fun. If I try to walk faster, I’ll just fall on my face and get trampled.
Yep. If I'm standing for more than a few minutes, I start getting really faint and absent-minded, and then very confused. I once forgot how to get into my own apartment (kept turning the key the wrong way) and thought someone had broken in and locked the door from the inside, and had to call my partner to come home. Another time I forgot whose wedding I was at, and asked a guest if he was nervous (cos in my head it was his wedding 3 years earlier). Most recently I forgot to strap my baby's carseat into the car and was lucky my mom was there to notice. A few times I've just caught myself before walking into roads, and I also get very clumsy and prone to tripping and falling.
So yeah, standing is not something I can safely do much of outside of very controlled situations. My brain just doesn't get enough blood.
I use a rollator. I need it to sit often. I get very fatigued and out of breath when walking short distances along with the dizziness, tachycardia, and lightheadedness. I don’t get out much because I still can go far with a rollator without getting too fatigued. I do think it helps others around realize that you might need some accommodations or patience.
Yep! I have a manual for home and rougher terrain and a powerchair for smoother terrain due to the fatigue. I can't walk for longer than 5 minutes without a problem on a good day, and most things I need to get to are further than that.
I fall over. Tachy and so dizzy I just lose my balance completely and fall - I don't normally faint though. I once didn't have a choice (live up a flight of stairs with no lift and nobody to help me that day) and walked 20 minutes in 5 minute bursts with a rest at each end because AI had to do medical stuff in person and it had to be that day. Caused a two week period where I couldn't even sit up. Not doing that again.
I start getting dizzy when it gets to about 120, but highest I've seen it is 135 before my body decided I should stop walking and be on the floor now. As far as I'm aware it will keep going higher the longer I'm upright, as I can't stay up long enough for it to settle, so I don't know if it would stabilise or keep climbing if I was able to go any further.
I should probably also state that I'm currently unmedicated as it's a recent diagnosis (Feb 2023)and I'm waiting for my next appointment, so this might change once I have treatment beyond salt and compression.
I just started using one! My symptoms have been worsening and my husband and I went camping with his family last weekend. I bought a wheelchair so I could still participate going on hikes and my husband pushed me along the trail.
I use my cane mostly, but I've thought about using a wheelchair for airports and the like. I'm also contemplating getting a rollator so I can sit when needed.
I use an upright walker, like a rolator but taller, which has a seat so I can sit when necessary. I also don't really go anywhere except medical appointment for me, my eldest or my dog
I have a cane that converts to a chair (it's called Ta Da Chair) and it's nice because it's light, i can travel with it, and I can still walk with it and take breaks as needed. Being in a wheelchair is hard for me because my arms aren't very strong and I don't live in an accessible place.
My mother just bought me a reclining one. It’s was a life saver on an airplane ride and wedding I just recently was able to attend. I could not have done it without it.
If I’m having a bad day I use a cheap push wheelchair that I keep in the trunk of the car. I’ve been getting better and been able to exercise a bit so I don’t need it as much but it’s still a savior for when my heart rate wants to be crazy or the fatigue is too much.
I have a wheelchair and a cane and use both in different situations, depending on how I feel that day and where I need to go. Both are a huge help. I can walk or stand unassisted for about five minutes on a good day. On a bad day, it's way less. With my wheelchair I'm generally able to still go out into the world - there's always exception days where sitting upright is out of the question all together.
Yeah. I get dizzy, see stars, go pale and sweaty, my heart starts pounding like mad and if I don't sit down, the ground will make that decision for me.
I use wheelchair assistance in airports when traveling, but imposter syndrome keeps me from trying to use one in other spaces. I struggle so much standing in lines and being on my feet for prolonged periods, so it would probably help, but it's hard for me to feel entitled to that kind of mobility aid.
I use a Rollator with a wheelchair function! Basically when I’m alone I just stop and take a sit when in line. When I have a friend or fiancée with me it has attachments that pop down so someone can push me around. Best part is I got it secondhand for like $50
Me too! Best decision I ever made. Walker most of the time, but sometimes we use the wheelchair function for times when we know there's going to be lots of time on our feet.
What does it feel like when you're standing in lines and being on your feet for a while?
It feels awful, like there’s no circulation. You know like when you’ve cut off your circulation, and that moment before the tingling starts? And my head sometimes pounds, and I’ll feel like I’m gonna go down.
Yes this is exactly how it is for me! When I'm in line sometimes I'll have to hold onto the counter for fear of falling over.
Yes. Even as I’m wobbling along with my cane, I keep asking myself if I really need it. I guess that’s why I was so thrilled to have a NAME for all my symptoms! I don’t know whether to laugh or cry sometimes: my husband and I used to spar in taekwondo class, I used to be so fast! And now he’s running into me at home because he can’t wrap his head around the fact that I’ve lost the ability to move quickly. My brain thinks, move! My body doesn’t respond. I can’t tell if he thinks I’m being difficult, or if he gets it. I don’t think he understands. I mean, how could anyone who doesn’t have it? I still don’t understand.
I’m new to this, but I just bought a cane because it helps with my stability but also signals to people (at least the ones who care) that I may look fine, but I’m not. It saves me some anxiety in public spaces. It makes a big difference in how people look at you! I mean, before, I felt glared at for being slow, and now people smile at me and give me space. I made the decision after trying to navigate the airport with able bodied people crashing through not even thinking about how scary crowds are when you’re unstable. My husband kept getting way ahead of me and then looking back impatiently. Yeah. So fun. If I try to walk faster, I’ll just fall on my face and get trampled.
Have you tried trekking poles? I use them and OMG they are such a huge help!
Yep. If I'm standing for more than a few minutes, I start getting really faint and absent-minded, and then very confused. I once forgot how to get into my own apartment (kept turning the key the wrong way) and thought someone had broken in and locked the door from the inside, and had to call my partner to come home. Another time I forgot whose wedding I was at, and asked a guest if he was nervous (cos in my head it was his wedding 3 years earlier). Most recently I forgot to strap my baby's carseat into the car and was lucky my mom was there to notice. A few times I've just caught myself before walking into roads, and I also get very clumsy and prone to tripping and falling. So yeah, standing is not something I can safely do much of outside of very controlled situations. My brain just doesn't get enough blood.
Does this happen while sitting too I find I get faint sitting too?
Yes, especially if my feet are on the floor. But it takes longer.
That’s why I have a little stool everywhere that I sit. I can get my feet up a little higher.
Yes!! I scare myself near roads because sometimes I just step out without looking. Luckily no one was coming.
I use a rollator. I need it to sit often. I get very fatigued and out of breath when walking short distances along with the dizziness, tachycardia, and lightheadedness. I don’t get out much because I still can go far with a rollator without getting too fatigued. I do think it helps others around realize that you might need some accommodations or patience.
I have to use one full time now but I started out only using one on trips out if the house. It was a huge help.
Same!
Yep! I have a manual for home and rougher terrain and a powerchair for smoother terrain due to the fatigue. I can't walk for longer than 5 minutes without a problem on a good day, and most things I need to get to are further than that.
What happens if you try and walk longer?
I fall over. Tachy and so dizzy I just lose my balance completely and fall - I don't normally faint though. I once didn't have a choice (live up a flight of stairs with no lift and nobody to help me that day) and walked 20 minutes in 5 minute bursts with a rest at each end because AI had to do medical stuff in person and it had to be that day. Caused a two week period where I couldn't even sit up. Not doing that again.
How high does your heart rate go? And will it stay like that high if you try and keep walking?
I start getting dizzy when it gets to about 120, but highest I've seen it is 135 before my body decided I should stop walking and be on the floor now. As far as I'm aware it will keep going higher the longer I'm upright, as I can't stay up long enough for it to settle, so I don't know if it would stabilise or keep climbing if I was able to go any further. I should probably also state that I'm currently unmedicated as it's a recent diagnosis (Feb 2023)and I'm waiting for my next appointment, so this might change once I have treatment beyond salt and compression.
Body says, floor now! Lol. I totally get it.
I've used the electric ones in grocery stores before but I don't own a wheelchair at all. I've only ever used it if absolutely necessary
My heart stays hovered over 140 if I walk I’m not sure why but it doesn’t go back down so it’s difficult to walk in public.
When walking my HR is lower than when I'm standing still so I can usually manage walking unless there's an external factor at play that messes with me
I have a mobility scooter that I use when necessary.
I just started using one! My symptoms have been worsening and my husband and I went camping with his family last weekend. I bought a wheelchair so I could still participate going on hikes and my husband pushed me along the trail.
Wow!
I use my cane mostly, but I've thought about using a wheelchair for airports and the like. I'm also contemplating getting a rollator so I can sit when needed.
My daughter does. She felt odd doing it at first, but she can't walk very far or do stairs as she blacks out.
I use an upright walker, like a rolator but taller, which has a seat so I can sit when necessary. I also don't really go anywhere except medical appointment for me, my eldest or my dog
I use a wheelchair virtually anytime I’m out of the house mostly due to my other conditions but definitely helps with POTS too
I have a cane that converts to a chair (it's called Ta Da Chair) and it's nice because it's light, i can travel with it, and I can still walk with it and take breaks as needed. Being in a wheelchair is hard for me because my arms aren't very strong and I don't live in an accessible place.
My mother just bought me a reclining one. It’s was a life saver on an airplane ride and wedding I just recently was able to attend. I could not have done it without it.
If I’m having a bad day I use a cheap push wheelchair that I keep in the trunk of the car. I’ve been getting better and been able to exercise a bit so I don’t need it as much but it’s still a savior for when my heart rate wants to be crazy or the fatigue is too much.
I have a wheelchair and a cane and use both in different situations, depending on how I feel that day and where I need to go. Both are a huge help. I can walk or stand unassisted for about five minutes on a good day. On a bad day, it's way less. With my wheelchair I'm generally able to still go out into the world - there's always exception days where sitting upright is out of the question all together.
If you stand too long do you get bad tachycardia?
Yeah. I get dizzy, see stars, go pale and sweaty, my heart starts pounding like mad and if I don't sit down, the ground will make that decision for me.