Wheelchair Arrival for EDS and POTS

[@SatumainenOlento]

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]

Options are everything but emotions are definitely present when options are chosen!!! 💕

[@dancingpianofairy]

I felt like such a dumbass for not realizing this was an option earlier.

[@alwaysforeverme3841]

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]

Glad you got your chair. I hope you have gotten more comfortable getting out and about.

[@astoryrewrite2268]

Thank you! 💜💜💜

[@sarahemf]

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]

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!!!

[@KathrinHausermann]

I have CP but also chronic lumbago. Getting my first Wheelchair in 2008 was the best thing and I was just happy. It meant freedom and pain relief and it still does.

[@claireconquers2182]

I’m getting my wheelchair delivered today and I’m just looking up all the videos that I can. This was super informative because I am getting my chair delivered with that company.

[@astoryrewrite2268]

The company is WONDERFUL. And congrats on getting your chair I hope it brings you freedom !

[@angelwings8415]

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.

[@GhostWriterEtc.7]

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]

I appreciate the experience I had with them. They made this not only possible but not incredibly stressful. Which I am grateful for… whew.

[@rogerokelley]

Wonderful color. I love it. Be proud. I know you are 🎉

[@astoryrewrite2268]

Thank you!

[@bogwin9621]

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]

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]

@@astoryrewrite2268 new adventure is in plans. Scuba. 😄

[@jennifermcmillan9518]

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]

Power chair would be so much easier I do get very tired but I’m hard headed.

[@jennifermcmillan9518]

@@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]

@@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.

[@evelacey7492]

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]

Thank you. This is my hope. Thank you for sharing!

[@oliviapetty7231]

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]

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]

@@astoryrewrite2268 AAG is autoimmune autonomic ganglionopathy, it’s a very rare form of dysautonomia. I’m getting a quickie 5r performance

[@rachelannbarkley2329]

Thank you so much for sharing this.

[@astoryrewrite2268]

Of course!!! Thank you for watching and joining us here.

[@jadeofcourse1645]

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]

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.

[@sammyjugheadsumpter7343]

Love this video and I also have numotion for my chairs they are awesome

[@astoryrewrite2268]

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!

[@jenng3649]

I have the same chair from NuMotion, but with a Smart Drive/. Mine is metallic blue!

[@jenng3649]

I also have EDS and POTS and most everything else that comes with

[@astoryrewrite2268]

I wonder if I would enjoy using a smart drive- if it would be helpful for me-

[@Jenng1278]

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

[@louise8752]

I hope the chair gives you freedom to explore outdoors and get back out into the world more. Ease of mobility!! Mixed emotions I'm sure but with time I hope you find a lot of value in it.

[@Harmonica.Mike.64]

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]

Yessss info could go back I’d do my spokes different but yes that’s the chair. I like it a lot.

[@GAINZonWHEELS]

Can’t wait for my own so 11 weeks, other chair is not ergonomic and is not you… know what I mean

[@devnull3278]

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]

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]

@@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]

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]

@@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.

[@toddmiller2966]

@@devnull3278 Did you use Scooter Store Ken Livengood at the NSM office in Champaign? A back that is too tall seems like something he would provide.

[@davidwiss2300]

I like it!

[@jennifermunzinger9141]

My Chair is from Meyra with the e motion m25 duodrive from Alber

[@astoryrewrite2268]

I’ll have to look it up! Never heard of it. ❤

[@jennifermunzinger9141]

Its Both from germany

[@tellyy1122]

i need those wheelchairs

[@astoryrewrite2268]

It has proven to be helpful in many situations.

[@jennifermunzinger9141]

Look good i wait for my New too but my Chair is from meyra

[@astoryrewrite2268]

What’s yours look like?

[@dancingpianofairy]

3:22 lol, I do that with my ankles, too. No calf strap?

[@astoryrewrite2268]

No I didn’t want to feel tied up and constrained.

[@dancingpianofairy]

@@astoryrewrite2268 How would a calf strap do that?

[@solveigst-juste6276]

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]

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]

How long did your wheelchair take

[@astoryrewrite2268]

It took all together- start to finish- about a year.

[@RyeRyeBread]

Hi, do you know what height the backrest is on this chair?

[@astoryrewrite2268]

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]

Time for a walk about!

[@OverboardStudio]

Lmao he has the exact voice of the counselor from South Park

[@astoryrewrite2268]

That’s funny- maybe he is a voice actor on the side!

[@SRF-vm3fy]

i have eds. am i going to get wheelchair too in the future? everyone i see with this syndrome has a wheelchair.

[@astoryrewrite2268]

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-

[@arcelifaustino3137]

hm this kind of wheelchair my friend..

[@pradeeptiwary2131]

Why are u using wheelchair.

[@astoryrewrite2268]

Due to POTS and EDS side effects.

[@pradeeptiwary2131]

@@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]

@@pradeeptiwary2131 they're not really things that you get well soon from.

[@pradeeptiwary2131]

@@mydogeatspuke i m sorry ....

[@Kuyakevsofficial6871]

Wow can you give me a wheelchair