Wheelchair Arrival for EDS and POTS
Рет қаралды 21,176
3 жыл бұрынSo here’s the deal. It’s here. You all have taken part in portions of this journey with me so as I said I am sharing the final moments which is the delivery! I am grateful for NUMOTION as this company has been great. Easy to work with and compassionate. So many on IG have had questions as my first reveal was there so please feel free to hit me up if there is something I can answer regarding my experience in the process. I am still dealing with my own feelings about where I am health wise but this tool is here and ready for when I am ready and can no longer deny it. I wish I was in a different place about it mentally but I am where I am and that is okay! I am not letting the community down for not being over zealous and eager to be in a position to need this mobility tool AND getting it. This is hard. This IS an unfolding process I have to digest and continue to be present for as it not only progresses but everyday is different.
So I hope this was helpful, all three videos. Of course I did not film the paperwork and phone calls that made this moment possible but believe me there were plenty. Thank you for stopping by, take care and love on yourself a bit... I’m sure you need it! We all do...
Wheelchair company I used:
Numotion
www.numotion.com
Wheelchair Evaluation and EDS
• Wheelchair Evaluation ...
Guess what?!
Beginning to dabble with some MERCH for those of you asking... here is a test run! Enjoy!
Story Collection:
tinyurl.com/19v6r77k
EDS Collections:
tinyurl.com/2exjowuj
More info on EDS
www.ehlers-danlos.com/eds-types/
Ehlers Danlos Society
www.ehlers-danlos.com
Join me on Instagram for more connection!
@astoryrewrite
@SatumainenOlento 2 жыл бұрын
Oh dear, I never even though about the wheelchair being an option if my legs give up/I get too tired to move. This makes me feel so much sadness, but also RELIEF to know that options are out there! It is a funny mix of emotions.
@astoryrewrite2268 2 жыл бұрын
Options are everything but emotions are definitely present when options are chosen!!! 💕
@dancingpianofairy 9 ай бұрын
I felt like such a dumbass for not realizing this was an option earlier.
@alwaysforeverme3841 7 ай бұрын
I’ve just come across this video after having been looking into getting a manual for the last month or so for my worsening cfs/me. I’ve recently realised the same thing, why didn’t I think about getting a wheelchair much much sooner! (I’ve hired wheelchairs in airports, but never thought about getting one for home. 🤦🏻♀️)
@zabm3502 3 жыл бұрын
Glad you got your chair. I hope you have gotten more comfortable getting out and about.
@astoryrewrite2268 3 жыл бұрын
Thank you! 💜💜💜
@sarahemf 3 жыл бұрын
I have a powered chair, and I remember deciding the colour based off of what would make me feel more comfortable to use it. And I remember feeling ok this is the moment the moment I become a wheelchair user. I had used wheelchair before but this chair was mine. And I remember people saying don’t use it to much you’ll become reliant on it and you’ll loss muscle, you’ve got to watch your weight ect. I’ve had my chair for 9 months and it was the best thing I have done. I am reliant on it for quality of life, I’m still a part time wheelchair user but I’m getting out of the house more then once a fortnight now I go do thing and have more energy to do things without it. My ot ect thing I should use it more but it’s a process
@astoryrewrite2268 3 жыл бұрын
Thank you for sharing! I have found I am much more open and Comfortable using it when I go out of town. What a pride issue right!!! I am working on it, it’s a process. But I used it in Colorado this last trip and I will be using it this next weekend traveling as well. I haven’t posted anything as far as content because I don’t see any value of content to share but it’s been so helpful when traveling!!!
@rogerokelley 6 күн бұрын
Wonderful color. I love it. Be proud. I know you are 🎉
@astoryrewrite2268 8 сағат бұрын
Thank you!
@rachelannbarkley2329 Жыл бұрын
Thank you so much for sharing this.
@astoryrewrite2268 Жыл бұрын
Of course!!! Thank you for watching and joining us here.
@kristendixon7127 2 жыл бұрын
Awesome video! I just got the same chair from NuMotion today, Super nice people to work with and the chair is incredibly well made, lightweight and easy to maneuver. Like you, I don’t want attention in my chair also and chose white. The chair fits me perfectly. I also have EDS and POTS. Good luck to you. ❤️
@astoryrewrite2268 2 жыл бұрын
I appreciate the experience I had with them. They made this not only possible but not incredibly stressful. Which I am grateful for… whew.
@angelwings8415 Ай бұрын
I’m picking mine up at 8:30 this morning. NuMotion has been very helpful in getting exactly what I need for my EDS Hyper-mobility. I will also have a smart drive, I have a very old very terrible fitting Invacare chair that I’m so happy to get rid of. Quickie Nitrum will be an upgrade for sure.
@evelacey7492 3 жыл бұрын
Looks good! I found I was also apprehensive at first, but as soon as I took my chair out and realised that it made life so much easier it became my best friend!
@astoryrewrite2268 3 жыл бұрын
Thank you. This is my hope. Thank you for sharing!
@jennifermcmillan9518 Жыл бұрын
New to your channel, he there fellow zebra! I just ordered my new wheelchair today. I had to order a power chair because my shoulders are shot but I’m excited for me new independence. I have severe SI joint instability so walking on most days is a challenge. I’m glad you took the step too.
@astoryrewrite2268 Жыл бұрын
Power chair would be so much easier I do get very tired but I’m hard headed.
@jennifermcmillan9518 Жыл бұрын
@@astoryrewrite2268 Do it while you can. It’ll give you exercise. I’m past the point of being able to exercise so don’t take it for granted. I miss it so much. I take walks when I can but those days are few and far between now. I’m almost 50 and in peri menopause and man do I wish I had the estrogen to help with pain.
@gabeangel8104 Жыл бұрын
@@astoryrewrite2268 I used a manual for quite a few years and am now in a power chair. I know that for those of us who have a hard headed nature it's hard to overcome the inclination to keep pushing through even when you know you aren't ok, but I would advise trying to listen to your body as much as possible if and when the time comes that you need to change. In the end I was just putting way too much strain on my wrists, hands and shoulders, and pushing the limits of the fatigue so much that I was just disabling myself more. Now, with my power chair, it's back to being the aid it was when I first got a chair.
@sammyjugheadsumpter7343 2 жыл бұрын
Love this video and I also have numotion for my chairs they are awesome
@astoryrewrite2268 2 жыл бұрын
I have grown to like mine much more! It is very helpful especially traveling. I haven’t yet ventured out into my personal community with it but for very short trips I don’t need to- yet. What color and style of chair do you have? Numotion really was so great to work with!
@davidwiss2300 3 жыл бұрын
I like it!
@jadeofcourse1645 3 жыл бұрын
I have been trying and trying to get a chair for my POTS but my dr keeps refusing even though my PT thinks it's a good idea. How did you get yours?
@astoryrewrite2268 3 жыл бұрын
I’m sorry you are having trouble with this! My rhuemy thought it would be helpful for EDS but my PT said EDS sure but POTS even more so the rhuemy sent script and PCP (due to insurance) sent referrals and PT did assessments and it took about a year for the whole process. Worked with Numotion. They were great.
@bogwin9621 2 жыл бұрын
I got my first chair when I was fat. I payed cash 7,000 bucks. I was desperate for freedom. The second chair was covered and I had lost 80 lbs. it’s a smaller design. Both chairs are TiLite. I use both. I can walk but it hurts. I start to become filled with an angry buzzing ache and soon after I loose balance because my legs don’t respond like I tell them to. I try to sit in time but it happens fast. The more I walk can cause enough pain to make me vomit and that can last for days sometimes. I’m recovering from a day of overdoing it today and it is hard to do. Without my chair I’d live a tiny life. With my chair I can and did solo the boardwalk at Yellowstone Old Faithful. Travel solo. I also recover by not walking so I can walk later. I’m attached to my chair because it is the only safe place besides bed.
@astoryrewrite2268 2 жыл бұрын
Wow! You are a strong person! I am grateful I still have further mobility but life changes so quickly so helpful aids are nice to have waiting for more use. I’m sorry to hear things have been difficult in a limiting way. 💜
@bogwin9621 2 жыл бұрын
@@astoryrewrite2268 new adventure is in plans. Scuba. 😄
@oliviapetty7231 3 жыл бұрын
I’m getting my chair derived from numotion on November 16th! I got the call today! I also have EDS and another from of dysautonomia called AAG
@astoryrewrite2268 3 жыл бұрын
I have never heard of AAG. Numotion is who I used and they did a great job! I appreciated their kindness and effort to care for me!!! What are you getting? 💜💜💜
@oliviapetty7231 3 жыл бұрын
@@astoryrewrite2268 AAG is autoimmune autonomic ganglionopathy, it’s a very rare form of dysautonomia. I’m getting a quickie 5r performance
@jenng3649 Ай бұрын
I have the same chair from NuMotion, but with a Smart Drive/. Mine is metallic blue!
@jenng3649 Ай бұрын
I also have EDS and POTS and most everything else that comes with
@astoryrewrite2268 Ай бұрын
I wonder if I would enjoy using a smart drive- if it would be helpful for me-
@Jenng1278 Ай бұрын
See if NuMotion will let you try it out! It's not for everyone, hut a lot of us with EDS have one. I only got to try it first because they had one at the rehab I was staying at and allowed me to use it and see if it would be something I could handle. My rehab doctor is the one who fought for me to get it. I had broken both legs and an arm and he had pressed for it as it was a status change with my health. I'm a PT user as I have good days and bad days
@Harmonica.Mike.64 5 ай бұрын
Is that chair a TiLite Aero Z? I wish I knew it came in that color, I ordered mine in gray frame with green forks. I love mine but I love green. Nice chair.
@astoryrewrite2268 5 ай бұрын
Yessss info could go back I’d do my spokes different but yes that’s the chair. I like it a lot.
@tellyy1122 3 жыл бұрын
i need those wheelchairs
@astoryrewrite2268 2 жыл бұрын
It has proven to be helpful in many situations.
@devnull3278 2 жыл бұрын
I have a weird question! I realize where a wheelchair back fits on each person will vary, but I was fitted with a REALLY high back and it's horrible. How tall is your wheelchair back? That size looks exactly like what I'm looking for.
@astoryrewrite2268 2 жыл бұрын
Not weird at all! I don’t know the exact height of it like in inches but I requested a very low back. And this was the option or the lowest numotion had. They had planned to fit me with a higher one but when we were doing the fitting I made the request myself and explained it would provide me with more ability to move and less reliability on the back where it might make me sit sloppier. I hope this helps?
@devnull3278 2 жыл бұрын
@@astoryrewrite2268 Definitely! I asked them the same and they refused (it's always hit or miss with either insurance or the DME company, heh). But I'm due for a new chair next year so I'm basically demanding it since I have to pay out of pocket since I no longer have employer-based health insurance. Thanks again for the info!
@astoryrewrite2268 2 жыл бұрын
I know it’s been awhile- but did you think about possibly contacting the company to see if they have any grants you could apply for the get a new chair?
@brin57 Жыл бұрын
@@astoryrewrite2268 great answer. If you have good core, a very low back helps maintain good upright posture. I've been in a chair for 45 years and still rock a 9 inch back . If I want to comfortably relax, I sit in a comfy chair or sofa. Your chair looks to be really well scripted for you, which I've seen is not common in the U.S. apparently. I would remove the tip bars as well. They can cause a lot of grief in some situations. Good luck with everything.
@dancingpianofairy 9 ай бұрын
3:22 lol, I do that with my ankles, too. No calf strap?
@astoryrewrite2268 9 ай бұрын
No I didn’t want to feel tied up and constrained.
@dancingpianofairy 9 ай бұрын
@@astoryrewrite2268 How would a calf strap do that?
@jennifermunzinger9141 11 ай бұрын
Look good i wait for my New too but my Chair is from meyra
@astoryrewrite2268 6 ай бұрын
What’s yours look like?
@jennifermunzinger9141 6 ай бұрын
My Chair is from Meyra with the e motion m25 duodrive from Alber
@astoryrewrite2268 6 ай бұрын
I’ll have to look it up! Never heard of it. ❤
@jennifermunzinger9141 6 ай бұрын
Its Both from germany
@GAINZonWHEELS 7 ай бұрын
Can’t wait for my own so 11 weeks, other chair is not ergonomic and is not you… know what I mean
@solveigst-juste6276 Жыл бұрын
If you get fatigued while in an outing with someone on your wheelchair, is there a way they can push you with this wheelchair model?
@astoryrewrite2268 Жыл бұрын
There are optional customizable handle that can be added on but mine doesn’t have them. I do get pushed tho when I’m fatigued.
@alaynatamura5394 2 жыл бұрын
How long did your wheelchair take
@astoryrewrite2268 2 жыл бұрын
It took all together- start to finish- about a year.
@RyeRyeBread 10 ай бұрын
Hi, do you know what height the backrest is on this chair?
@astoryrewrite2268 9 ай бұрын
No sorry. I’m not sure. When I was being measured for the chair I literally just tried a few and told him which one I wanted. It was the lowest me they had
@davidwiss2300 3 жыл бұрын
Time for a walk about!
@OverboardStudio Жыл бұрын
Lmao he has the exact voice of the counselor from South Park
@astoryrewrite2268 9 ай бұрын
That’s funny- maybe he is a voice actor on the side!
@arcelifaustino3137 2 жыл бұрын
hm this kind of wheelchair my friend..
@SRF-vm3fy 2 жыл бұрын
i have eds. am i going to get wheelchair too in the future? everyone i see with this syndrome has a wheelchair.
@astoryrewrite2268 2 жыл бұрын
Everyone’s body is different! I have friends and family that have never needed much in the way of a mobility aid. So you may never need any or much extra assistance or you might find that life requires it-
@pradeeptiwary2131 2 жыл бұрын
Why are u using wheelchair.
@astoryrewrite2268 2 жыл бұрын
Due to POTS and EDS side effects.
@pradeeptiwary2131 2 жыл бұрын
@@astoryrewrite2268 ohh i am suffering from Transverse Myelitis.....hope u get well soon....anyways nice wheelchair....such wheelchair brand not available in india ...god bless u
@mydogeatspuke Жыл бұрын
@@pradeeptiwary2131 they're not really things that you get well soon from.
@pradeeptiwary2131 Жыл бұрын
@@mydogeatspuke i m sorry ....
@Kuyakevsofficial6871 Жыл бұрын
Wow can you give me a wheelchair
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