I've just been dealing with being homebound whenever POTs is acting up a bit, which is often, because a lot of people in my life pressured me to not use a wheelchair because I'm not "disabled enough". But after dealing with being long term stuck at home during quarantine I refuse to be homebound ever again, so I'm getting that wheelchair.
Thanks for making this. I have to admit that I’m 39 and I didn’t realize until maybe 5-6 years ago that there are people who need wheelchairs to make their life easier or for greater independence and it doesn’t necessarily mean that the person is unable to stand or walk. I felt pretty ignorant when I realized this. It’s so great to share your story and educate others!
I have POTS and Chronic Fatigue Syndrome. I bought a cheap wheelchair to see if it would help me and it has! I’m going to my doctor tomorrow to see if I can have a custom one. I’m really hoping she likes the idea. Wish me luck!
How'd it go? That's the approach I took as well - borrowed a cheap one for a year and a half, it helped a ton but needed something closer to my size, so bought a cheap one that fit a bit better, and now I'm in the process of getting a custom. I should have it before the end of the summer - so excited!
Not well! My doctor was super unhelpful. Told me she only writes wheelchair prescriptions for people in nursing homes! If I didn’t have my parents looking after me I’d probably have to be in a care home. I didn’t have the energy for an argument and I was aware I’d probably have to fund some of it myself so eventually decided to skip the hassle of wheelchair assessments and ask for help from family for my birthday present to top up what I’d saved. So my new chair is half way sorted but the wheelchair shop has closed down temporarily so I will have to wait a little longer! I’ve been building up my wheelchair strength with dance with Liberate Dance and wheelchair workouts. Hope we both get our new chairs soon!
Television, Hollywood and churches have trained us to have a **SHOCK** reaction when we see a wheelchair. This explanation is great and it's non-confrontational. We need more people like you.
Your story is almost my story verbatim, it’s insane. I have POTS (and EDS) and decided to get a wheelchair and it’s wonderful. I can last so much longer and have a lot more fun when I use my wheelchair.
I was diagnosed with POTS 15 years ago. What really helps is Prozac. I didn't know it helped until I started on Prozac to cope with my mom who had Alzheimer's. I started to notice that I had more energy and my muscles felt stronger and my heart didn't race as much. Then my mom passed away and I decided to go off the Prozac and 3 weeks later my POTS symptoms started again. I just thought that I had sort of gone into a remission but didn't realise that Prozac helped. So when my symptoms started again my husband asked what had changed? I said the only thing was that I had weaned myself off the Prozac. When then searched online and found that many POTS sufferers have found relief using an SSRI. BTW I am also a bunny lover and run a helpline for the care of rabbits here in South Africa.
Syncope is really scary. I was cleaning my fish tank one time and I leaned down to pick up a hose that had fallen between the tank and the wall, but I stretched too far and pulled my shoulder muscle, it was such a sudden pain that I shot straight up and the next thing I remember was my vision going black, my head hurting, and then being on the floor. My mom and dad were so scared that they called an ambulance and the doctors said it was an episode of syncope. I’m really sorry you’ve had to go through all this Haley.
This is so helpful! I am thinking of talking to my doctor about getting a wheelchair, but I wanted to do research on other POTS patients using chairs. Thank you for making this!
For those that want a ‘general/technical’ summary of POTS “What is postural orthostatic tachycardia syndrome (POTS)? Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). It involves the autonomic nervous system (which automatically controls and regulates vital bodily functions) and sympathetic nervous system (which activates the fight or flight response). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. The primary symptom of an orthostatic intolerance is lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat.” From clevelandclinic I’m so glad this is something that works for you and has helped you live more freely. :)
New subscriber here after seeing the video in my recommendations :) I’m a wheelchair user as well due to the effects of my Ehlers-Danlos Syndrome where POTS or some other type of dysautonomia or orthostatic intolerance is one of the things I do deal with on a daily basis, it’s most likely POTS though seeing my heart rate can go from 90-160+ upon standing up from sitting. But oh well. Chair does help a lot both to manage the POTS symptoms and lessen pain and fatigue in general. I’m like you with the walking, I walk or it’s more “walk” at home (often lose my balance or have to use walls) but when I’m out and about I’m in my chair because it’s the safest and most effective and energy efficient way for me to get around. Still often have to rest after activities, but without the wheelchair I wouldn’t be able to go out at all...
Wow thank you for sharing this with us, I've been watching your 101Rabbits channel for a while and would never have guessed you experience these health issues. I am so inspired that you manage to operate multiple RUclips channels and are always so cheerful and kind. 💗💗💗
Thanks so much for making this video. I've got a number of conditions that between them are making it wise for me to start using a wheelchair, at least sometimes. I've got a nice one but am having a rough time with the psych side of adjusting to using it. Many of your comments about feeling fatigued after going out etc echo many of my feelings. It's nice to know I'm not alone in this decision process.
I have cerebral palsy and started using a wheelchair to get around outside. It surprised me how negative people were about me using one, for me it enabled me to enjoy being out without all the pain and fatigue I usually experienced when walking, but I guess if someone's never experienced difficulty walking they won't fully understand. It's good that you're educating people about ambulatory wheelchair users cos for some reason people assume you can't walk or stand at all if they see you in a wheelchair, or think that you're 'faking it'. I don't think I'd have the patience like you do to explain it to everyone, cos I don't see why able-bodied people think it's okay to ask disabled people about their medical history especially when you hardly know one another. When I meet someone who uses a wheelchair I just think they must have their reasons for using one, and if they want to drop it into conversation that's up to them, not for me to pry.
Haley, I have some of your symptoms, I was told by my doctor that an arterial valve was not shunting blood correctly to my brain. I had mild sporadic symptoms whereas my cousins condition was extreme like yours. He had a surgery in his adolescence the open up the blood flow to his brain. It was a successful surgery. Sometimes natural angles of blood vessel branching can cause blood flow disturbances as well.
Hi Haley, I’m a first wave covid long hauler (acute covid April 2020). I still have multiple symptoms especially neurological and joint pain/inflammation. Many of the nero systems are similar to POTS. Some long haulers have been now diagnosed or at least treated as if they have POTS. I’m fortunate to be able to keep my symptoms manageable with a high salt high fluids and almost no caffeine… plus being very mindful when I change positions. My insomnia and the near chronic severe migraines that it triggers are being controlled with a very early bedtime, meds, and a smart home that automatically dims the lights and changes the colour temperature away from blue to pink. I also have to be off computer screens by 8pm. (iPad with night mode/low brightness is ok.) I can walk long distances, but am always at least a bit dizzy, and do need breaks. Also, unless I’m on a forest trail or near running water there’s constant ringing/buzzing in my ears. (Water sounds and wind in trees seem to be good white noises for the hearing issues.) I know something about POTS (Jen from Momming with Migraine has POTS. She and and her service dog Buddy are awesome!), but I didn’t know about legs/feet getting sore and more tired. I’ve been a cane user and Nordic walking poles user since January 2021. The poles work better for me because my main physical issue is my Achilles and ankles, and the poles help a lot with forward momentum. They’re also get when I get sudden mild/moderate dizzy spells because I can tripod on them and bend forward a bit…. But I use my (new bright pink patterned!) cane on transit because otherwise I don’t “look disabled”, and I definitely can’t stand on the subway, streetcars, or busses. On days where I have to use transit and my cane a lot I’m more tired and sore, my brain fog isn’t mild (thank goodness I typically only have mild brain fog!), the ringing in my ears is louder, and I’m more dizzy at night. Thank you so much for highlighting that POTS affects joints/muscles as well as fatigue and dizziness/pre-syncope! I’m looking forward to seeing your new service dog! (That’s how I found your channel… will be checking out your bunny one too. :-) .) PS I’m not self diagnosing here! Long covid is newer and as a first wave long hauler I’m the Guinea pig. I have a science degree (with anatomy cadaver lab, physiology), have been a volunteer first responder, ?and worked in special Ed for 18 years. I know enough to sort the good from the misinformation and bring relevant info to my rehab medical team.
The last time I Fainted I was at work, and I hit the back of my head and had a seizure as I lost consciousness, which resulted in me getting a mild concussion. 5 months ago I was diagnosed with a chronic autoimmune disease, and I also believe I may have POTS too but its been hard getting my doctors to look further into it. This past summer I fainted at least three or four times and that was in a short span of a few weeks. So I definitely want to eventually get a wheelchair or some other ambulatory mobility aid. So that I have that added protection if I start to feel faint or suffering from joint pain, body weakness and fatigue which I suffer from alot.
I have very severe POTS. I’m on medication, over hydrate. Nothing seems to fully help! I’m at a complete loss and am on bed rest indefinitely at 19! It’s awful. I am glad I have my faith but my quality of life is depleting....
Gm, Zoey I started to write u a long and lengthy message but I changed my mind.😊 I to have POTs and Vasovagal and was partially paralyzed for a few wks after a falling (i just loss strength in my body) at work. I refuse to except it. I am disable now but with mobility impairment (slow pace and with less endurance). I say to u " If u are able to move at all keep it MOVING . If u can roll back and forth - ROLL ON . If u can rock and shake - ROCK & SHAKE IT. Not once and a while but as often as u can. Ask for assistance if u need to." Do not just exist -BE EXISTING. 😉 If I can do it, I believe u can too. Yes, by all means keep the FAITH and keep it MOVING (if u can). ☺
I went through a lot of these symptoms for 2 years. I'd get out of the car, go inside somewhere and 20 seconds later - all black, can't catch my breath, no balance, etc. Felt like a computer rebooting. Of all things, it was bleeding ulcers. I had 50% blood and NO iron, and couldn't make any. Almost dead when they found it. It's amazing how many different things cause similar symptoms and people can't see anything, so they invent nutty explanations for your behavior. Rock on!
Thanks for providing this, was looking into getting a wheelchair for ambulatory purposes after a medical scare yesterday. Have pre-existing conditions that limit how long I can stand/walk. Anything over 30 minutes without breaks, my back and legs can hurt and in severe cases pre-syncope like you explain. I’ve never actually fainted but, had a warning sign to sit down. Only have had that happen one other time but, don’t know if it’s my current conditions or maybe something like POTS.
I also have POTS, and I find showering to be one of the most difficult things for me to do. I have not gotten a shower chair yet as the tub in my apartment is old and it may be difficult to get one that sits properly bc the edges of my tub curve up quite a bit. But even with sitting down in my tub and taking cooler showers, I experience so much pain/fatigue/lightheadedness following my showers. Have you found anything else that helps you with this? (If showering is an issue for you) thank you! Also! I would love to hear even more about your wheelchair. I rented one at the aquarium just so I was capable of seeing my sister on her birthday and it really helped me, but I was so worried about getting stares when I would stand, like people were confused why I was in a chair to begin with, if my mom wanted to take a photo of my sister and I. I would love to hear you talk about if you’ve struggled with anything like that when it comes to going out with your wheelchair and how you became confident enough to not worry about it anymore.
Good job Hailey. Have you thought about getting a inhome nurse for help. Might be really helpful. My friend with Pots hired 3 in home nurses and shes very happy now, two nurses helps her with her 12 bunnies. Think about it
I am an ambulatory wheelchair user, and the part of you talking about recovery time/pain etc of choosing not to use it! I relate! I'm new to my limits and with a very in-denial family who is not supportive. So youtube and facebook support groups are kind of my only outlet/learning resources!
I understand you issues, for me I have Adhesive Arachnoiditis, very painful. I can stand for 10 minutes and walk maybe 15-25meters. Also walking on ballroom floors are usually ok but walking on grass, dirt or concrete is impossible. Thanks for this video
I went to my school nurse cause I have issues (vasovagal syncope) and when I told her I collapsed into my partners arms and couldn’t get the elevator key in because of how shaky I was (I also use elevator and can’t participate in gym) she told me to just lay down for ten minutes then sent me back to class because it was 9th period so there was “no point in sending me home”. As I was sitting there gasping for air, dizzy, nauseous and pale. She gave me water and that was it. Then I had to go to class and suffer
I may be wrong, but my our chair doesn’t seem properly fitted and accessorized for a person with as much ability as you. Also, there are a LOT of reasons some places aren’t accessible period, much less easily accessible.
Sounds so familiar. I personally carry a very small portable chair with me when I go to places. I have considered getting a wheelchair for longer outings but have been hesitant out of fear of what family will react (they tend to pretend I'm perfectly fine). I think they have that opinion because of my cycling. But it is my cycling that has allowed me to get out of bed easier. But still shopping or regular events are a challenge and I have to really preplan my day to make sure I have the energy go get through all of my day comfortably. May I ask how you approached the subject with your family?
POTSie Cyclist My family was definitely not on board at first. They didn’t feel I was sick enough to have a wheelchair. But as soon as they went on an outing with me, using my chair, they were blown away by how much more I was able to do and function that now they’re 100% on board with it.
I have cp so I understand how walking and standing can cause the leg pain and stuff like that because I have that a lot instead of in my leg mostly it’s in my right ankle and sometimes my other ankle and my knees and I also have way lower balance than most people because of the way my CP is so sometimes when I’m on longer events like when I had to go to a field trip to Six Flags for a senior trip one year my mom borrowed a wheelchair for me from one of her coworkers at work I have one now but I have to get it back for my dad it’s electric
How did you manage to overcome your family and friends being against you using a chair? I would also like to know about the process to get a wheelchair.
I’ve always wondered why so many users use manual wheelchairs. From an outsider perspective, it seems like an electric wheelchair is so much more convenient:) Also, would love to see a house tour on how you have to set up to accommodate your disability!
Mainly money/insurance reasons. You have to prove to insurance that you need an electric wheelchair in order for them to approve it. I was approved for a device known as a smart drive that connects to my wheelchair and makes it electric. I will try to do a video on that in the future. But to get a fully electric chair would be extremely expensive and probably wouldn’t be covered in my instance.
The electric wheelchairs are extremely expensive. I was able to go straight to a manual chair with a power add on because I injured my shoulder in a car accident many years ago. My dr said using a manual chair would aggravate that injury. It took almost a year of fighting with insurance for me to get my chair.
Power chairs are so more inconvenient they are big heavy and cumbersome they have there place I have both power chair and Manuel I far prefer my Manuel we don’t have to worry about going on bus train taxi etc I would choose a manual with a smart drive over a power chair I have a old smartdrive which is on its way out but will be devasted when it dies
I think it's great that you brought awareness to this cuz most people don't know what this is I never heard about this before but also I won question were you born with pots
I know what you mean about pain. While the world is home because of the corona virus It’s my normal life staying home because chronic pain and unable to walk. I have a manual wheelchair my husband pushes me in to my doctor appointments only. I’m waiting for him to order me a power wheelchair so I can do things around the house. I have spinal stenosis and tumors in my spine and few other spine problems. Spinal stenosis is now in my arms so I would not be able to push my self. Lol our dollars stores has stuff every where to. I’m looking into one of those power wheelchairs that folds up and fits in the car trunk.
I’m sure you have a really good reason to have such a high back rest but a general tip for those who wants to and can be very active in their wheelchair is to not have the back rest reach over your shoulder blades since it will be in the way every time you move/drive.
Girl... I just saw your Draw my Life video (I’ve seen more of you before (like your POTS))... Please look into Ehlers-Danlos Syndrome... Sounds like you might have it
just because you r in a wheelchair does not mean u can't walk i'm in a wheelchair because i have nurve damage in my right leg and it shake a lot so it is a walker r wheelchair must of the time at home i use the walker but to go out we take my chair
can you give us few tips deal with back and left leg pain I injured my left leg in the army training and back 2017 I fallen down on my back and I felt it go out and start hurting few days and now it's been hurting deal then.
I've just been dealing with being homebound whenever POTs is acting up a bit, which is often, because a lot of people in my life pressured me to not use a wheelchair because I'm not "disabled enough". But after dealing with being long term stuck at home during quarantine I refuse to be homebound ever again, so I'm getting that wheelchair.
don't listen to what people who don't understand say, if a wheelchair helps you, just get one, it's not like you have to use it 24/7.
Thanks for making this. I have to admit that I’m 39 and I didn’t realize until maybe 5-6 years ago that there are people who need wheelchairs to make their life easier or for greater independence and it doesn’t necessarily mean that the person is unable to stand or walk. I felt pretty ignorant when I realized this. It’s so great to share your story and educate others!
I have POTS and Chronic Fatigue Syndrome. I bought a cheap wheelchair to see if it would help me and it has! I’m going to my doctor tomorrow to see if I can have a custom one. I’m really hoping she likes the idea. Wish me luck!
Hope it went well!
How'd it go?
That's the approach I took as well - borrowed a cheap one for a year and a half, it helped a ton but needed something closer to my size, so bought a cheap one that fit a bit better, and now I'm in the process of getting a custom. I should have it before the end of the summer - so excited!
Not well! My doctor was super unhelpful. Told me she only writes wheelchair prescriptions for people in nursing homes! If I didn’t have my parents looking after me I’d probably have to be in a care home. I didn’t have the energy for an argument and I was aware I’d probably have to fund some of it myself so eventually decided to skip the hassle of wheelchair assessments and ask for help from family for my birthday present to top up what I’d saved. So my new chair is half way sorted but the wheelchair shop has closed down temporarily so I will have to wait a little longer! I’ve been building up my wheelchair strength with dance with Liberate Dance and wheelchair workouts. Hope we both get our new chairs soon!
@@EmilyCricket Good luck Emily. You've got this!
@@SnowySpiritRuby Excited for you. Stay blessed!
Television, Hollywood and churches have trained us to have a **SHOCK** reaction when we see a wheelchair. This explanation is great and it's non-confrontational. We need more people like you.
Your story is almost my story verbatim, it’s insane. I have POTS (and EDS) and decided to get a wheelchair and it’s wonderful. I can last so much longer and have a lot more fun when I use my wheelchair.
I was diagnosed with POTS 15 years ago. What really helps is Prozac. I didn't know it helped until I started on Prozac to cope with my mom who had Alzheimer's. I started to notice that I had more energy and my muscles felt stronger and my heart didn't race as much. Then my mom passed away and I decided to go off the Prozac and 3 weeks later my POTS symptoms started again. I just thought that I had sort of gone into a remission but didn't realise that Prozac helped. So when my symptoms started again my husband asked what had changed? I said the only thing was that I had weaned myself off the Prozac. When then searched online and found that many POTS sufferers have found relief using an SSRI. BTW I am also a bunny lover and run a helpline for the care of rabbits here in South Africa.
Syncope is really scary. I was cleaning my fish tank one time and I leaned down to pick up a hose that had fallen between the tank and the wall, but I stretched too far and pulled my shoulder muscle, it was such a sudden pain that I shot straight up and the next thing I remember was my vision going black, my head hurting, and then being on the floor. My mom and dad were so scared that they called an ambulance and the doctors said it was an episode of syncope. I’m really sorry you’ve had to go through all this Haley.
I had a syncope once on the street, and fell under a bus... couldn't walk for two years... syncope can be dangerous if it happens at the wrong time...
This is so helpful! I am thinking of talking to my doctor about getting a wheelchair, but I wanted to do research on other POTS patients using chairs. Thank you for making this!
I think it's great that you make these videos. It really helps people to understand your condition. I know it's helped me to. Cheers to you!
For those that want a ‘general/technical’ summary of POTS “What is postural orthostatic tachycardia syndrome (POTS)?
Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). It involves the autonomic nervous system (which automatically controls and regulates vital bodily functions) and sympathetic nervous system (which activates the fight or flight response).
POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. The primary symptom of an orthostatic intolerance is lightheadedness, fainting and an uncomfortable, rapid increase in heartbeat.” From clevelandclinic I’m so glad this is something that works for you and has helped you live more freely. :)
New subscriber here after seeing the video in my recommendations :) I’m a wheelchair user as well due to the effects of my Ehlers-Danlos Syndrome where POTS or some other type of dysautonomia or orthostatic intolerance is one of the things I do deal with on a daily basis, it’s most likely POTS though seeing my heart rate can go from 90-160+ upon standing up from sitting. But oh well. Chair does help a lot both to manage the POTS symptoms and lessen pain and fatigue in general. I’m like you with the walking, I walk or it’s more “walk” at home (often lose my balance or have to use walls) but when I’m out and about I’m in my chair because it’s the safest and most effective and energy efficient way for me to get around. Still often have to rest after activities, but without the wheelchair I wouldn’t be able to go out at all...
Wow thank you for sharing this with us, I've been watching your 101Rabbits channel for a while and would never have guessed you experience these health issues. I am so inspired that you manage to operate multiple RUclips channels and are always so cheerful and kind. 💗💗💗
Please do a video all about your custom wheelchair!!
I would like to know more about your wheelchair.
i recommend looking up wheel2walking on youtube.. he has awesome video's!
angera I watch him to ! Highly recommend Tamara
Thanks so much for making this video. I've got a number of conditions that between them are making it wise for me to start using a wheelchair, at least sometimes. I've got a nice one but am having a rough time with the psych side of adjusting to using it. Many of your comments about feeling fatigued after going out etc echo many of my feelings. It's nice to know I'm not alone in this decision process.
So helpful! Exactly how I feel about my wheelchair!
you have explained detailed and clearly, wish you the best, seems like you are a very clear and pure soul
I have cerebral palsy and started using a wheelchair to get around outside. It surprised me how negative people were about me using one, for me it enabled me to enjoy being out without all the pain and fatigue I usually experienced when walking, but I guess if someone's never experienced difficulty walking they won't fully understand. It's good that you're educating people about ambulatory wheelchair users cos for some reason people assume you can't walk or stand at all if they see you in a wheelchair, or think that you're 'faking it'. I don't think I'd have the patience like you do to explain it to everyone, cos I don't see why able-bodied people think it's okay to ask disabled people about their medical history especially when you hardly know one another. When I meet someone who uses a wheelchair I just think they must have their reasons for using one, and if they want to drop it into conversation that's up to them, not for me to pry.
Haley,
I have some of your symptoms, I was told by my doctor that an arterial valve was not shunting blood correctly to my brain. I had mild sporadic symptoms whereas my cousins condition was extreme like yours. He had a surgery in his adolescence the open up the blood flow to his brain. It was a successful surgery. Sometimes natural angles of blood vessel branching can cause blood flow disturbances as well.
Hi Haley,
I’m a first wave covid long hauler (acute covid April 2020). I still have multiple symptoms especially neurological and joint pain/inflammation. Many of the nero systems are similar to POTS. Some long haulers have been now diagnosed or at least treated as if they have POTS.
I’m fortunate to be able to keep my symptoms manageable with a high salt high fluids and almost no caffeine… plus being very mindful when I change positions. My insomnia and the near chronic severe migraines that it triggers are being controlled with a very early bedtime, meds, and a smart home that automatically dims the lights and changes the colour temperature away from blue to pink. I also have to be off computer screens by 8pm. (iPad with night mode/low brightness is ok.) I can walk long distances, but am always at least a bit dizzy, and do need breaks. Also, unless I’m on a forest trail or near running water there’s constant ringing/buzzing in my ears. (Water sounds and wind in trees seem to be good white noises for the hearing issues.)
I know something about POTS (Jen from Momming with Migraine has POTS. She and and her service dog Buddy are awesome!), but I didn’t know about legs/feet getting sore and more tired.
I’ve been a cane user and Nordic walking poles user since January 2021. The poles work better for me because my main physical issue is my Achilles and ankles, and the poles help a lot with forward momentum. They’re also get when I get sudden mild/moderate dizzy spells because I can tripod on them and bend forward a bit…. But I use my (new bright pink patterned!) cane on transit because otherwise I don’t “look disabled”, and I definitely can’t stand on the subway, streetcars, or busses.
On days where I have to use transit and my cane a lot I’m more tired and sore, my brain fog isn’t mild (thank goodness I typically only have mild brain fog!), the ringing in my ears is louder, and I’m more dizzy at night.
Thank you so much for highlighting that POTS affects joints/muscles as well as fatigue and dizziness/pre-syncope! I’m looking forward to seeing your new service dog! (That’s how I found your channel… will be checking out your bunny one too. :-) .)
PS I’m not self diagnosing here! Long covid is newer and as a first wave long hauler I’m the Guinea pig. I have a science degree (with anatomy cadaver lab, physiology), have been a volunteer first responder, ?and worked in special Ed for 18 years. I know enough to sort the good from the misinformation and bring relevant info to my rehab medical team.
The last time I Fainted I was at work, and I hit the back of my head and had a seizure as I lost consciousness, which resulted in me getting a mild concussion. 5 months ago I was diagnosed with a chronic autoimmune disease, and I also believe I may have POTS too but its been hard getting my doctors to look further into it. This past summer I fainted at least three or four times and that was in a short span of a few weeks. So I definitely want to eventually get a wheelchair or some other ambulatory mobility aid. So that I have that added protection if I start to feel faint or suffering from joint pain, body weakness and fatigue which I suffer from alot.
Thanks for sharing Hayley. i use a wheelchair because i broke my neck surfing in 1998, luckily i have no pain. thanks again!
I have very severe POTS. I’m on medication, over hydrate. Nothing seems to fully help! I’m at a complete loss and am on bed rest indefinitely at 19! It’s awful. I am glad I have my faith but my quality of life is depleting....
I know not much I say can help you, but just keep fighting! I have moderate pots at 14 and am confined to a wheelchair. You can do it!
Gm, Zoey
I started to write u a long and lengthy message but I changed my mind.😊
I to have POTs and Vasovagal and was partially paralyzed for a few wks after a falling (i just loss strength in my body) at work. I refuse to except it. I am disable now but with mobility impairment (slow pace and with less endurance).
I say to u " If u are able to move at all keep it MOVING . If u can roll back and forth - ROLL ON . If u can rock and shake - ROCK & SHAKE IT. Not once and a while but as often as u can. Ask for assistance if u need to."
Do not just exist -BE EXISTING. 😉 If I can do it, I believe u can too.
Yes, by all means keep the FAITH and keep it MOVING (if u can). ☺
Ms. LEO smiles thank you so much ❤️
I went through a lot of these symptoms for 2 years. I'd get out of the car, go inside somewhere and 20 seconds later - all black, can't catch my breath, no balance, etc. Felt like a computer rebooting. Of all things, it was bleeding ulcers. I had 50% blood and NO iron, and couldn't make any. Almost dead when they found it. It's amazing how many different things cause similar symptoms and people can't see anything, so they invent nutty explanations for your behavior. Rock on!
Thanks for providing this, was looking into getting a wheelchair for ambulatory purposes after a medical scare yesterday. Have pre-existing conditions that limit how long I can stand/walk. Anything over 30 minutes without breaks, my back and legs can hurt and in severe cases pre-syncope like you explain. I’ve never actually fainted but, had a warning sign to sit down. Only have had that happen one other time but, don’t know if it’s my current conditions or maybe something like POTS.
I also have POTS, and I find showering to be one of the most difficult things for me to do. I have not gotten a shower chair yet as the tub in my apartment is old and it may be difficult to get one that sits properly bc the edges of my tub curve up quite a bit. But even with sitting down in my tub and taking cooler showers, I experience so much pain/fatigue/lightheadedness following my showers. Have you found anything else that helps you with this? (If showering is an issue for you) thank you!
Also! I would love to hear even more about your wheelchair. I rented one at the aquarium just so I was capable of seeing my sister on her birthday and it really helped me, but I was so worried about getting stares when I would stand, like people were confused why I was in a chair to begin with, if my mom wanted to take a photo of my sister and I. I would love to hear you talk about if you’ve struggled with anything like that when it comes to going out with your wheelchair and how you became confident enough to not worry about it anymore.
I saw another RUclips-r with a shower stool. It was round & just big enough to sit on. That might be a better fit for your tub. :)
I had the same issue with my bath. I used a bath bench and that worked for me
Good job Hailey. Have you thought about getting a inhome nurse for help. Might be really helpful. My friend with Pots hired 3 in home nurses and shes very happy now, two nurses helps her with her 12 bunnies. Think about it
Came here from 101rabbits, and wow!!! You got even more awesome 😊 Happy to meet the other side of you!
Would love to see the video on how you went about getting a wheelchair that works for pots!
I am an ambulatory wheelchair user, and the part of you talking about recovery time/pain etc of choosing not to use it! I relate! I'm new to my limits and with a very in-denial family who is not supportive. So youtube and facebook support groups are kind of my only outlet/learning resources!
I understand you issues, for me I have Adhesive Arachnoiditis, very painful. I can stand for 10 minutes and walk maybe 15-25meters. Also walking on ballroom floors are usually ok but walking on grass, dirt or concrete is impossible. Thanks for this video
I went to my school nurse cause I have issues (vasovagal syncope) and when I told her I collapsed into my partners arms and couldn’t get the elevator key in because of how shaky I was (I also use elevator and can’t participate in gym) she told me to just lay down for ten minutes then sent me back to class because it was 9th period so there was “no point in sending me home”.
As I was sitting there gasping for air, dizzy, nauseous and pale. She gave me water and that was it. Then I had to go to class and suffer
I am so happy I found your channel! I’d love to see tons of videos about your chair, including what it was like getting insurance to pay for it.
i loved whatever videos i watched of yours and it surprised me about your health issues.....i m also happy you are a rabbit lover like me
I may be wrong, but my our chair doesn’t seem properly fitted and accessorized for a person with as much ability as you. Also, there are a LOT of reasons some places aren’t accessible period, much less easily accessible.
Also, would love to see tips on living independently with a disability and maybe a day in the life:)
I have multiple sclerosis I have pots syndrome also cardiologist said its multiple sclerosis related..I'm on a beta blocker it helps 70%
Would love to know more about your wheelchair.
Sounds so familiar. I personally carry a very small portable chair with me when I go to places. I have considered getting a wheelchair for longer outings but have been hesitant out of fear of what family will react (they tend to pretend I'm perfectly fine). I think they have that opinion because of my cycling. But it is my cycling that has allowed me to get out of bed easier. But still shopping or regular events are a challenge and I have to really preplan my day to make sure I have the energy go get through all of my day comfortably. May I ask how you approached the subject with your family?
POTSie Cyclist My family was definitely not on board at first. They didn’t feel I was sick enough to have a wheelchair. But as soon as they went on an outing with me, using my chair, they were blown away by how much more I was able to do and function that now they’re 100% on board with it.
I use a wheelchair part time for multiple disorders and I hate it but I think I know what you mean.
I use one actually, because I amputated my left leg, and prefer wheelchairs over prosthetics
I have cp so I understand how walking and standing can cause the leg pain and stuff like that because I have that a lot instead of in my leg mostly it’s in my right ankle and sometimes my other ankle and my knees and I also have way lower balance than most people because of the way my CP is so sometimes when I’m on longer events like when I had to go to a field trip to Six Flags for a senior trip one year my mom borrowed a wheelchair for me from one of her coworkers at work I have one now but I have to get it back for my dad it’s electric
I hate going out because its uncomfortable I can't find places to sit I fell and now its worse
I’m a new wheelchair user (BTK amputee). Great video. Thank you so much. :)
How did you manage to overcome your family and friends being against you using a chair?
I would also like to know about the process to get a wheelchair.
I’ve always wondered why so many users use manual wheelchairs. From an outsider perspective, it seems like an electric wheelchair is so much more convenient:)
Also, would love to see a house tour on how you have to set up to accommodate your disability!
Mainly money/insurance reasons. You have to prove to insurance that you need an electric wheelchair in order for them to approve it. I was approved for a device known as a smart drive that connects to my wheelchair and makes it electric. I will try to do a video on that in the future. But to get a fully electric chair would be extremely expensive and probably wouldn’t be covered in my instance.
The electric wheelchairs are extremely expensive. I was able to go straight to a manual chair with a power add on because I injured my shoulder in a car accident many years ago. My dr said using a manual chair would aggravate that injury. It took almost a year of fighting with insurance for me to get my chair.
Power chairs are so more inconvenient they are big heavy and cumbersome they have there place I have both power chair and Manuel I far prefer my Manuel we don’t have to worry about going on bus train taxi etc I would choose a manual with a smart drive over a power chair I have a old smartdrive which is on its way out but will be devasted when it dies
Thank you 🙏🏻🙏🏻🙏🏻 This is so helpful and encouraging 🦄
I think it's great that you brought awareness to this cuz most people don't know what this is I never heard about this before but also I won question were you born with pots
YES WORKING IN THE KITCHEN IS A POTS NIGHTMARE
What made you decide to get a manual wheelchair rather than electric?
I know what you mean about pain. While the world is home because of the corona virus
It’s my normal life staying home because chronic pain and unable to walk. I have a manual wheelchair my husband pushes me in to my doctor appointments only. I’m waiting for him to order me a power wheelchair so I can do things around the house. I have spinal stenosis and tumors in my spine and few other spine problems. Spinal stenosis is now in my arms so I would not be able to push my self. Lol our dollars stores has stuff every where to. I’m looking into one of those power wheelchairs that folds up and fits in the car trunk.
I’m sure you have a really good reason to have such a high back rest but a general tip for those who wants to and can be very active in their wheelchair is to not have the back rest reach over your shoulder blades since it will be in the way every time you move/drive.
Please enable subtitles 🙏
Custom wheelchair video please
thank you for sharing
I have MS and I can walk but need a wheel chair.
Hi I'm Ben Michael collins and I'm in a wheelchair 20years old I've got pots and I need a wheelchair lot
Oh have you got EDS/joint hypermobility too?
Is it hard to self propel with such a high backrest ? My backrest is to low on my chair for me really
Glad that your wheelchair works well for you!! I have worked with special needs children & enjoyed that!!!
Hi Haley. Have you thought about getting a service dog to help? I think it would be amazing for you
I have. I plan to have one someday, but it’s not the right time in my life to get one now.
Haley's Life Through A Lens oh ok
Please make the video if you haven’t!
I have POTS and use a wheelchair! Your story is so similar to mine. I'd love to connect with you if you're interested.
Can you make a video on the type of wheelchair.?
Hey we have the same name and it’s spelled the same way!!!!!!
I would like to know more about your wheelchair
Thank you
there is a delay in your video the video and sound is not synced hope this helps
could you enable subtitles in this video?
Girl... I just saw your Draw my Life video (I’ve seen more of you before (like your POTS))... Please look into Ehlers-Danlos Syndrome... Sounds like you might have it
Emjee CB I do! I have Hypermobility EDS!
Haley's Life Through A Lens HA! It did hella sound like you did!
I love you Haley ❤️
You're pretty Strong😊
It works
just because you r in a wheelchair does not mean u can't walk i'm in a wheelchair because i have nurve damage in my right leg and it shake a lot so it is a walker r wheelchair must of the time at home i use the walker but to go out we take my chair
hii my sci level d11,12 I am from INDIA 🇮🇳
I've never heard of POTS before. This is just bizarre.
As you can see
can you give us few tips deal with back and left leg pain I injured my left leg in the army training and back 2017 I fallen down on my back and I felt it go out and start hurting few days and now it's been hurting deal then.
do you have EDS and would you get a service dog
Tana Giberson I was wondering about EDS as well! I checked out her videos, but I think if she has it, she doesn’t know yet
Why have you disabled automated captions? So not cool
We're cool. B
Prayers. Jesus can heal his reach is never to short until then much love
You're cute! 😍
so you can walk but only when you want to
L