Thank you for talking about the subject of accepting help and considering both mobility and adaptive aids. I took a brief shower this morning and I ended up in a chair for the rest of the day. I use a shower stool when showering and drying off and a cane (occasionally) when walking. I feel very fortunate that I have a really nice zero gravity chair. As a retired OT I can tell you that asking for help and accepting adaptions can be very difficult at any age. It’s always helpful when there is someone who can provide emotional support. Personally, it can feel very lonely when you have a “mostly invisible” disability.
Thanks so much for watching and you're very welcome. It's not an easy thing by any means but I think it's important to talk about and share how we're feeling and support one another any way we can. Yes! Having an invisible illness is very hard in so many ways. It's hard to explain how isolating it can be and the war inside your own mind. Thanks so much for commenting and I wish you all the best. Stay in touch!
ive had POTS for as long as i could walk and i constantly feel like im not "disabled enough" to use mobility aid just because i rarely have bad days and can do things without fainting (despite the discomfort)
Im homeless with pots. Still technically undiagnosed but got a positive on my at home ttt. Ive been looking into getting a rollator walker. Since im forced to be more mobile than others with pots due to being homeless i struggle with lightheadedness and dizziness. Even walking short distances is hard. There are tons of times where after walking i need to sit to help with the hr, dizziness and lightheadedness but theres nowhere to sit. My problem on top of the feelings of being less than due to needing an aid is the fact that i also need it to carry some things i must keep with me due to homelessness. I shower at a gym and they have a disabled shower with a shower chair qnd ive been using that lately. It does help. Ive also been thinking about cutting my hqir short from the long hair. The long hair is giving way to many problems. Since im not officially diagnosed i cant get on ssi or have my insurance cover the cost of the walker. Yet im realizing im too sick to do most of the work im qualified for. So it feels like im stuck in limbo. 😕 ive heard that its best to get an aid that fits your personality cwuse your more likely to use it and thats very true. I just need to wait things out and push for the testing from a dr. Good news is im on the right trackbto getting the diagnosis.
i am currently going through this. i got sick one day and now here i am, newly navigating POTS. looking into mobility aids as a 19 year old is scary and nerve wracking.
Thank you for this video! I have been struggling with accepting my reality but finally am seeing the inner growth it is bringing about in me. I also have a transport chair and a shower seat and you are absolutely right! It makes daily life a little more possible. I still can't work or do much to take care of myself but these aids have helped me feel more like myself. I can have clean hair now and get to the gym to swim. Swimming is helping my pots slowly bur surely.
You’re very welcome. I’m glad I could encourage you in some way. There’s def no shame in doing what we need to in order to take care of ourselves as best we can. I really want to get into swimming as well, just gotta Look into where to go! Mind you, I’m not a good swimmer but I’m hopeful lol 😂
Thankyou so much. I have NFD and chronic fatigue. Its so new and so hard to accept mobility aids. My fiancee is so supportive and wants to do her best in getting me aids but I am having such a hard time. This helped me so much
I am 21 years old (senior in college) and I recently got a custom manual wheelchair for myself that my doctor prescribed for me. I have fibromyalgia and POTS and it can be really hard for me to get up and move around. However, my own family members are super ableistic and don't think I need any mobility aids. How can I set up boundaries of how I can get over my own internalized ableistic views so I can actually use my wheelchair?
Hello! Thank you for reaching out and sharing a part of your story. I’m sorry that your family is struggling with this and even you yourself. For me, what it came down to was do I want to be able to DO THINGS that I need/want to do? Or do I want to sit in the house and feel more sorry for myself? In this life, we all face struggles and trials, for you right now, it’s this. We don’t know if it’s just a temporary thing and that soon you won’t need it. But the fact is your doc prescribed it. Put aside other people’s opinions and do what’s best for you and your psychical/mental health. I know it’s easier said than done, but I promise you, it gets easier each time. Soon you will start to feel joy just being out and about, even if you’re limited.
I have been thinking of a wheelchair a lot lately. To the point I have talked to my husband about it. He is apprehensive about it because he still remembers who I was. So I talked to my Pots cardiologist about it Monday and he said, "oh no, you don't want to do that. It will deconditioning you".... Now my husband is 100% against it and said just too exercise. I did PT last year and its made me worse! He saw what happened!
I'm so sorry you're dealing with this. It's so hard. If you were going to be out and about 24/7 and in the wheelchair and never walking ever, then no you wouldn't want to get one. But that is highly unlikely .. sometimes we literally can't walk, let alone stand, but we have things we need to do or places to go. In that instance, of course it would be only normal to have a mobility aid. I hope that your doctor and husband warm up to the idea. And ultimately it's your decision. Do what YOU need to do to function as much as you can.
@@whitney8931 Thank you ❤️. I just want to get out of the house with my family and do something fun for once. My oldest had 10 years with me before because disabled. 4 years later, its been hard on everyone.
I feel for you. I have severe fibromyalgia. I had to travel from Canada to England for a funeral. I had to go by myself which was very difficult. On the way back I had to change planes and had a really stressful time. I ended up in tears. The airline staff gave me a wheelchair which really helped me. They wheeled me out to meet my husband at arrivals. He said “What the heck are you doing in That? I was so embarrassed and he made me feel so bad about using the wheelchair. He never ever understood my illness or supported me the way he should have. I am on my own now. I have been fighting using a Walker, and it has become very difficult for me to walk, even with a cane. I finally broke down and purchased a walker. I am so glad I did as I can walk further now. I don’t worry about falling so much, and I get a little more exercise. We all have to do what we need to. WE know our own bodies. Don’t let anybody tell you when you do or don’t need a,wheelchair!!!! Please take care of yourself. Big hugs ❤️🇨🇦❤️🇨🇦❤️🇨🇦
This is exactly what I am going through at the moment, all these thoughts and the grieving process as my health continues to decline. I know I want to live my life though and am starting to come to terms with the fact I might need to start using mobility aids to do that.
I feel like part of the stigma around mobility aids is from seeing disability as a dirty word. It's an us/them mentality. When you aren't paralyzed and obviously needing a wheelchair, it's hard to accept that you are a "them" if that makes sense... People don't understand that disabled does not equal unable!
I think I have POTS it’s been this way for a month… I can’t stand long or go to the bathroom without feeling I’ll pass out so I’m going to get a wheelchair…idk what people think, I feel like I need it… it’s so hard to function now…
@@whitney8931 well testing yes…but not diagnosed yet. He said I need lots of salt and he wants me to drink 4L of water a day…. And they sent me home with a heart monitor yesterday and they’ll monitor my heart for 27days… i waited two months for this cardiology appointment ugh what a pain
Thank you for talking about the subject of accepting help and considering both mobility and adaptive aids. I took a brief shower this morning and I ended up in a chair for the rest of the day. I use a shower stool when showering and drying off and a cane (occasionally) when walking. I feel very fortunate that I have a really nice zero gravity chair. As a retired OT I can tell you that asking for help and accepting adaptions can be very difficult at any age. It’s always helpful when there is someone who can provide emotional support. Personally, it can feel very lonely when you have a “mostly invisible” disability.
Thanks so much for watching and you're very welcome. It's not an easy thing by any means but I think it's important to talk about and share how we're feeling and support one another any way we can.
Yes! Having an invisible illness is very hard in so many ways. It's hard to explain how isolating it can be and the war inside your own mind.
Thanks so much for commenting and I wish you all the best. Stay in touch!
ive had POTS for as long as i could walk and i constantly feel like im not "disabled enough" to use mobility aid just because i rarely have bad days and can do things without fainting (despite the discomfort)
Im homeless with pots. Still technically undiagnosed but got a positive on my at home ttt. Ive been looking into getting a rollator walker. Since im forced to be more mobile than others with pots due to being homeless i struggle with lightheadedness and dizziness. Even walking short distances is hard. There are tons of times where after walking i need to sit to help with the hr, dizziness and lightheadedness but theres nowhere to sit. My problem on top of the feelings of being less than due to needing an aid is the fact that i also need it to carry some things i must keep with me due to homelessness. I shower at a gym and they have a disabled shower with a shower chair qnd ive been using that lately. It does help. Ive also been thinking about cutting my hqir short from the long hair. The long hair is giving way to many problems. Since im not officially diagnosed i cant get on ssi or have my insurance cover the cost of the walker. Yet im realizing im too sick to do most of the work im qualified for. So it feels like im stuck in limbo. 😕 ive heard that its best to get an aid that fits your personality cwuse your more likely to use it and thats very true. I just need to wait things out and push for the testing from a dr. Good news is im on the right trackbto getting the diagnosis.
You said you got sick over night and SAME! I got sick in an instant one day and ever since I’ve been so sick!! POTS is crazy!
Totally!!! It was so scary and been a whirlwind. Upside down life!
i am currently going through this. i got sick one day and now here i am, newly navigating POTS. looking into mobility aids as a 19 year old is scary and nerve wracking.
I feel your pain. I’m so sorry. You can do this though. Stay strong and keep fighting🥰
Hello, Everyone! Feel free to leave comments down below and share your feelings surrounding the use of mobility aids. TAKE CARE OF YOURSELVES
Thank you for this video! I have been struggling with accepting my reality but finally am seeing the inner growth it is bringing about in me. I also have a transport chair and a shower seat and you are absolutely right! It makes daily life a little more possible. I still can't work or do much to take care of myself but these aids have helped me feel more like myself. I can have clean hair now and get to the gym to swim. Swimming is helping my pots slowly bur surely.
You’re very welcome. I’m glad I could encourage you in some way. There’s def no shame in doing what we need to in order to take care of ourselves as best we can. I really want to get into swimming as well, just gotta Look into where to go! Mind you, I’m not a good swimmer but I’m hopeful lol 😂
I just use a noodle and tread water most of the time and that really seems to help
I read that all wrong lol I was like what???? Noodles??? Thread?? Haha
Thankyou so much. I have NFD and chronic fatigue. Its so new and so hard to accept mobility aids. My fiancee is so supportive and wants to do her best in getting me aids but I am having such a hard time. This helped me so much
You are so welcome! I am so very glad my video could help you. You have nothing to be ashamed up. You are choosing to keep fighting!
I am 21 years old (senior in college) and I recently got a custom manual wheelchair for myself that my doctor prescribed for me. I have fibromyalgia and POTS and it can be really hard for me to get up and move around. However, my own family members are super ableistic and don't think I need any mobility aids. How can I set up boundaries of how I can get over my own internalized ableistic views so I can actually use my wheelchair?
Hello! Thank you for reaching out and sharing a part of your story. I’m sorry that your family is struggling with this and even you yourself. For me, what it came down to was do I want to be able to DO THINGS that I need/want to do? Or do I want to sit in the house and feel more sorry for myself? In this life, we all face struggles and trials, for you right now, it’s this. We don’t know if it’s just a temporary thing and that soon you won’t need it. But the fact is your doc prescribed it. Put aside other people’s opinions and do what’s best for you and your psychical/mental health. I know it’s easier said than done, but I promise you, it gets easier each time. Soon you will start to feel joy just being out and about, even if you’re limited.
I have been thinking of a wheelchair a lot lately. To the point I have talked to my husband about it. He is apprehensive about it because he still remembers who I was. So I talked to my Pots cardiologist about it Monday and he said, "oh no, you don't want to do that. It will deconditioning you".... Now my husband is 100% against it and said just too exercise. I did PT last year and its made me worse! He saw what happened!
I'm so sorry you're dealing with this. It's so hard. If you were going to be out and about 24/7 and in the wheelchair and never walking ever, then no you wouldn't want to get one. But that is highly unlikely .. sometimes we literally can't walk, let alone stand, but we have things we need to do or places to go. In that instance, of course it would be only normal to have a mobility aid.
I hope that your doctor and husband warm up to the idea. And ultimately it's your decision. Do what YOU need to do to function as much as you can.
@@whitney8931 Thank you ❤️. I just want to get out of the house with my family and do something fun for once. My oldest had 10 years with me before because disabled. 4 years later, its been hard on everyone.
I feel for you. I have severe fibromyalgia. I had to travel from Canada to England for a funeral. I had to go by myself which was very difficult. On the way back I had to change planes and had a really stressful time. I ended up in tears. The airline staff gave me a wheelchair which really helped me. They wheeled me out to meet my husband at arrivals. He said “What the heck are you doing in That? I was so embarrassed and he made me feel so bad about using the wheelchair. He never ever understood my illness or supported me the way he should have. I am on my own now. I have been fighting using a Walker, and it has become very difficult for me to walk, even with a cane. I finally broke down and purchased a walker. I am so glad I did as I can walk further now. I don’t worry about falling so much, and I get a little more exercise. We all have to do what we need to. WE know our own bodies. Don’t let anybody tell you when you do or don’t need a,wheelchair!!!! Please take care of yourself. Big hugs ❤️🇨🇦❤️🇨🇦❤️🇨🇦
This is exactly what I am going through at the moment, all these thoughts and the grieving process as my health continues to decline. I know I want to live my life though and am starting to come to terms with the fact I might need to start using mobility aids to do that.
John
I feel like part of the stigma around mobility aids is from seeing disability as a dirty word. It's an us/them mentality. When you aren't paralyzed and obviously needing a wheelchair, it's hard to accept that you are a "them" if that makes sense... People don't understand that disabled does not equal unable!
Nice best wishes 4 "Coronavirus" here... Anyone else watching during the War?
I think I have POTS it’s been this way for a month… I can’t stand long or go to the bathroom without feeling I’ll pass out so I’m going to get a wheelchair…idk what people think, I feel like I need it… it’s so hard to function now…
Hello! I’m sorry to be so late in replying. How are you doing? Did you get tested for POTS?
@@whitney8931 well testing yes…but not diagnosed yet. He said I need lots of salt and he wants me to drink 4L of water a day…. And they sent me home with a heart monitor yesterday and they’ll monitor my heart for 27days… i waited two months for this cardiology appointment ugh what a pain
I’m sorry. The waiting is so hard. Especially when it’s so easy to to orthostatic testing in the office to determine if you have POTS.
@@whitney8931 yeah… I just hope I can get diagnosed with something but with the right diagnosis a