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Hi, fellow POTSie here. I totally get the point feeling "normal" and not recognizing the underlying medical condition. Retrospective, I would say I had POTS like problems since I was 12 years old. I often don't understand, why specific things seem so hard and exhausting for me in comparison to my peers. I constantly had to do "more" and tried harder. It's such an relief to get finally the correct diagnosis, especially if you have felt guilty all the time for several things. English is not my first language, maybe I missed the information: is your sister on the hypermobile spectrum too or has diagnosed EDS? One thing coming in my mind: I'm an ambulatory wheelchair user too (POTS and ME/CFS, Hypermobile) and getting more dump is rellay helping me sitting in my wheelchair. It's less exhausting. Maybe it's something to figure out, but maybe it's not possible with your other health issues. My customized chair has more dump but I added even more with a wedge shaped pillow i placed reverse.

Love your vlogs Are you able to walk for any period of time or have to your your wheelchair

Sweden is great this time of the year...i've been to gotteborg a couple of times! Greetings from Greece!

Thanks for sharing the journey, I love Sweden, you have a beautiful country. Greetings from Spain

❤

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good for you anything to make your life better thnx

Congrats on your new wheelchair! Having the right fit makes a difference. I have my first fitting with a new wheelchair OT on May 1st. It's an excellent way to kick off Ehlers-Danlos Syndromes and HSD awareness month! Can't wait to have a lightweight titanium rigid frame chair! I'm going for fold down push handles. Don't want them available to strangers to randomly push. Had a rental for a week last year and two men randomly pushed me without asking or announcing what they were doing. I'll be trying to get a RGK Freewheel covered by healthcare. It's a 12" front wheel that attaches to your footplate and the sides of your chair. When locked it pops the casters off the ground making it easier to go over tram/streetcar tracks, broken pavements, and construction. I'm holding off on getting power assist until I've had a chair for a bit. That way I'll know what I actually need. I've tried a Smart Drive and they're great. For full-time power assist out of the house electric hand bike attachments like the "PAWS Tourer" by Rehasense are fun. PAWS has cruise control and a walk function. But because it's an electric bike attachment that requires your hands to be around heart height it's not a good every day option for me. There's a nice shorter TH-cam video showing how it tackles snow.

That looks be some great wheels! Must be nice to relieve your shoulders of the constant pushing? And it makes me so happy (as a complete nature lover) to see accessible nature paths

Congratulations to your new chair 💐👍🎉! I'm in an O4 chair with Alber EmotionM25 smartdrive. A negative is, that I couldn't do wheelies with the smartdrive. But without it, I'm exhausted like you mentioned. I only can push myself inside on smooth ground. I have a dump, but this would the only thing I would change on my chair: Having more dump. I sit more stable and it's easier to handle the chair. My AlberEmotion came with thin pushrims... Eventually I would change this, because my hands are hurting. On my normal wheels I have Carbolife Gekko (thicker, with rubber). But actually I haven't the capacity to go thru this process (insurance stuff). I love videos about different chairs. They saved my life, getting my first chair and he is only so good, because of youtube! I would love to see more videos about your smartdrive, if you have tested it. Pros, cons etc. Greetings from Germany😊.

It’s interesting to see the difference and just how personal a wheelchair’s fit can be! I have a Ki Rogue2 as well (i’m in the USA) and personally, mine has a bucket/dump as well as bigger casters. I have the bolt-on pushrims which are just like the ones on your new panthera, but the ki version lol. Had a slimline cushion as well, also borrowed, and I personally hated it- so stiff 😭. I also have EDS and i’ve faced similar issues with thinner pushrims, but it’s more of a tendon and wrist problem for me than dislocating my fingers. I ended up getting thicker pushrims but they haven’t been delivered yet. A tip for the smartdrive: you can adjust the speed settings and the velocity that builds up to that speed in the app. Out of the box I think the speed limit is 70%

you did this really well, my professor didn't even bother explaining and said, "orthostatic hypotention" look it up online so yeah i actually appreciate the simplified explanation

beautiful vlogs ❤😊😊

I just subscribed! I’ve been chronically ill for three years now and am diagnosed with POTS and ME/CFS. I have a lot of joint and muscle pain and hyper mobility and EDS like symptoms so I’m trying to figure out what’s going on. I have never (that I know of) dislocated anything before, but I know there is more to EDS than that. Do any of your videos explain symptoms and things to look out for that indicate EDS? I’m trying to learn more, I’m sure you know how it is with doctors, it’s important to have knowledge because they don’t know much. I just traveled for the first time in my wheelchair in September. I’m traveling again on Sunday to my specialists so hopefully it all goes smoothly. I wish the sunflower lanyards were used more in the US. People don’t know what that is, so people here don’t use them. It would be nice for airports to have quiet rooms for disabled people, but I don’t think most airports do here. Im always happy to find new chronically ill TH-camrs!❤

Lady, do we show the middle finger?! 🤨🧐😂

I’m getting the same chair! I’ll have it in about a week!

What a great little home! I'm very pleased for you. Way better than all those stairs!

Nice chair. Just got my new chair yesterday. TiLite Aero Z. Lovin'it! Just subscribed today.

Hello sister, please mention your chronic illness name ?

👍🏻👍🏻

cute space! Love that the table is reachable from bed!

This made me feel so much less alone ❤ thank you for sharing x

Kia ora! Congrats on your new wheelchair. It looks really sleek! I'm still in the long process of getting my first one.

Hi! I'm also a wheelchair user and I like your table and chairs. I have a desktop pc in my little apartment and there is no room for a table,dining table.I always eat at my pc desk I'm jealous of your table. :) I hope you are doing well,have a nice day.

Linda silla Emelie, anhelo tener una igual.Saludos desde Perú 🇵🇪

Thank you for this video and for speaking out. Steph and Ruby were both my best friends and i was incredibly close with them both, they fought so incredibly well despite all the awful things and trauma they had to deal with and experience. The health system needs to change! This can't keep happening! I hope your well and again thank you for sharing this video <3

How much does it cost?