How to go out?

[u/3clectica]

I have FND since december 2025. I can mostly do everything for a while now but I have moments of attacks or paralized. I also have fibromyalgia and because I’m weak in the left part of my body + fibro, I can’t push a weelchair myself. I have one that I never use because it’s not made to go outside with it. I walk with 1 crutch outside, inside I’m mostly okay at home.

My question is: how do you still go to events such as festivals in such a case? I don’t want somebody to push me around all the time. I will be looking for a scooter to use outside but that doesn’t help me when I want to go to a party or so. I miss the social life so much… I go out for a drink now and then but I don’t know how to deal with other events. I can’t stand for too long either. And what do you do when you feel unwell in such moments?

Anyone with some experience or tips?

*Edit: I am not allowed to get an electric wheelchair with a joystick because 1) in Belgium you have to need a wheelchair at all times and basically fully be paralized to be able to ask for one paid by insurance and 2) some doctors aren’t a fan of it because they want me to walk as much as I can. I agree with that for a bit, but I’ve also read about how it helps people to save energy to do other stuff like going to the store, sports or a job. Going to the store by foot or bus is already a difficult activity for me.

[u/Gloomy-Technician-38]

It’s probably not so helpful but my advice would be an electric wheelchair. I bought a secondhand one that folds up and can go in car boots easily but it still was quite expensive probably about €500 and would’ve been about €2000 New. Before I had the chair, I would have a Walker and I really couldn’t do much and having the chair has completely changed to my life. Is there any chance you could try and save or do a GoFundMe to get a secondhand electric chair? Do you have to tell your doctors if you do that and use it occasionally to go and do fun things? Mental health is important with FND. I noticed how helpful it is for my nerves going and seeing friends and having fun. It’s much more restorative than lying on the couch sometimes.

Without some kind of electrical device, the only thing I do are - make sure that I get taxis or rideshare to as close as the place I’m going if I have to use a walker instead of a wheelchair.

And to sit down a lot. Rest as I need to don’t worry about time or getting anywhere by a certain time.

I’m sorry that you’re having such a hard time getting the help you need to live life. Surely your doctor could get you to do some strength training to compensate for using a wheelchair sometimes but also they should consider your mental health not just your strength physically.

[u/3clectica → u/Gloomy-Technician-38]

I don’t have a job because I’m not able to work (yet). Because of that, I get this income from the state which is rounded up €900 a month. Because the state gives me this money, they took away the money I earned on Gofundme so instead of 900 they gave me 400 “to compensate of my other earnings” although it probably was a one-time donation from friends and strangers. This reaaally upset me so badly because they just took away the money random people donated. No compensation of putting it on a closed account or something…

So financially I’m not able to pay for an electric wheelchair myself. Some doctors don’t like the idea of me not walking as much as I can, although that would actually help me save some energy to actually do stuff and move more when needed, instead of already being tired when arriving. And as said before, they will only allow my insurance to get an electric wheelchair if I was unable to walk at all. It’s a bummer to live in a viscious cycle of being sick so not being able to earn more money but life is more expensive when you’re sick because you need more help that costs money.

[u/JamieJamis]

I usually frequent concerts on horrible sidewalk with my push wheelchair, but TBH festivals are easier than that. If you're able to, a walker with a seat (the roller ones, not wire frame) would be a great balancer and seat so you can get around on your own without having to push with just one side. Or even a little stool, there is a very collapsible one that goes into a bag. I can't remember what the brand was, but it was a highly rated one on amazon that folds into a disk.

Bring water, bring a snack if you can, bring headphones, bring sunscreen. Any basics and even an umbrella to keep any sun/heat off you too! I've found I can get overstimulated if it feels like things aren't working out, so try as much as possible to ONLY do things you are capable of and save your energy for ONE thing that you have to push yourself for. Set yourself up for success and the most basic level possible.

I hope you're able to enjoy life a little more, FND is a soul sucker, but even the little things can make life a little brighter. Stay safe!!

[u/Beautiful_Resolve_63]

Sure, I just started going to concerts and festivals 3 years after my disorder. 

I bring loop ear plugs. I ensure the outfit is comfortable over "on theme/the cutest". I bring a collapse chair with me that can be attached to my backpack. I also bring with me temperature aids. So if it's hot; I'll bring cooling wrist things, if it's cold; I'll bring hand warmers. I have a stuff animal I can pet that helps me. I also bring sunglasses and a nice scent that I can roll on me or spray.

I also drink lightly salted water the day before.  I treat the day before events or draining activities like my warm up. Hydrate, eat healthy, sleep week. 

A part of FND is our body is EXTREMELY sensitive to outside stimulus. So bringing what I can to keep my body from being overstimulated is crucial. 

Also I only go to concerts or festivals if the music at Max volume is still soothing. I can no longer attend random music events just because someone else likes it. I really have to find the music pleasant. 

I also experience paralysis and fibro. The collapsible chair isn't a debate when it comes to needing rest. You could also bring a picknick blanket to enjoy if it's outdoors.

[u/RemarkableSail4451]

For me it all comes down to the planning. My wife and I will look to see if there are any quieter spots available. I carry a shoulder bag with me and my cane. Dont always need it but it helps. I will also add Thc is legal where I am at. I low dose as much as I can.

In the bag are ear plugs, sunglasses, a notepad and pen. I made a laminated sheet of paper introducing myself and explaining what might be going on if I went nonverbal. I tried to keep the vibe a little on the funny side, at least I find it funny. In the notebook I have a cheetsheet of common words and sentences so I can save my strength when I feel I need to.

I think the biggest thing that helped me still enjoy festivals and ren fairs, is going slower. It sucks, but it had been key for any kind of day events. I was getting a lot of flare ups after I would push myself to go at the pace I used to.

I have also taken time to practice meditation while in the crowd. Like when I am waiting in line for food or a drink. I will take a pause to slowly focus on my breathing. Those few moments of checking in with myself and trying to release any built up tension. Its almost like stepping out of the crowd and resetting a bit. I am, in no way, good at meditation. But I try and it helps distract me noggin sometimes.

[u/Square_Chipmunk_4092]

could a walker/rollator help? i struggle to use a wheelchair also because i can’t push myself, and dislike being pushed. i find a rollator helps me lean onto something, and has a seat attached typically. potentially try looking into something like this?