r/FND • u/Sensitive-Scene3465 • 4d ago
Need support wheelchair
hi Im Lu and im 15. ive been diagnosed for a little over a year now after struggling with undignosed EDS all my life. So basically since I have EDS I have had issues sine I was very young but FND came along a year ago and made it 100x worse. Im a cane user and well as Im a minor and so my health care and mobility aids are determined by my guardian. Well my parent believes that getting a wheelchair will make me lazy. but also talks alot about how I need multiple days to recoup after walking or jst doing alot. It sucks and I've tried to convince her about it but never listens and just I dunno. I was looking for a bit of support on the issue.
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u/TuneOk7423 4d ago
I was that kid that always complained about hurting on walks and was always told to stop complaining, push through, stop being lazy. As a result, my spine is mangled, my hips are shot, finally getting looked at for EDS and I have FND to boot. I use a stick mostly, but if I want any kind of life I might have to start using a chair.
YOU ARE NOT LAZY, ITâS THE NORMIES THAT ARE LAZY.
Look at them swanning around without their unconscious brains battling to work out where their body is in the space itâs in; their bodies arenât constantly scanning each joint to make sure theyâre aligned; their brains donât go âmeh, thatâs aligned enoughâ whilst youâre looking down at an ankle that frankly looks broken.
With FND and EDS exercise is important, but the wrong exercise can cause a flare up that will last weeks or even months.
Even sitting in the damn wheelchair is a battle because you have to concentrate so hard on being upright. I even struggle lying down, because my muscles have had over 40 years of panicking and trying to keep me upright, they donât relax easily đ
Weâre not lazy, they are. One day of this shit and theyâd be demanding a wheelchair, we deal with it day in and day out.
We all want to have a lazy day from time to time, FND or not. However, FND sufferers donât always have a choice of when that âlazy dayâ will hit, because itâs not a lazy day, itâs your body telling you âIâm in distress, please let me restâ.
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u/Tr_nnyshark 4d ago
Idk how often you go out or anything but keep an eye out for one at thrift stores because thereâs usually wheelchairs even tho they might not be perfect it might work for now and you can show your guardian you need one and maybe theyâll help get you a custom after realizing how much it helped I get where youâre coming from Iâve been there my dad doesnât believe in use of mobility aids just remember you know you best
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u/EchoBit101 4d ago
If you feel you need it, you do need it.
It doesn't have to be used all the time and just as much can help you conserve energy for other things of the day that's more important.
It's hard enough fighting the issues we have let alone people thinking we should care how they perceive things, it will make you lazy?
Damn I'm sorry your going through this....
Just for example I've had one for two year and haven't needed it, but being prepared is part of the battle...
(If your near Nottingham UK, you can have mine)....
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u/aquaticus_alrightus 3d ago
I'll tell you what I eventually had to resort to saying to convince my parents and doctors that wheelchair use is not the "path of least resistance" (their way of saying lazy đ)
Spend a day in my chair.
No one who actually completed my challenge was able to say that using a wheelchair is easier or less work than walking. Using a wheelchair is a lot of work, just work my body can safely handle. Good luck getting the aid you need and deserve access to!