Help i guess?

[Matthugh]

Hello, its been a while since i talked on here.

I have been diagnosed with FND for awhile now,but ive run into some annoying things that have been happening in my everyday life.

I use the metro train for travel because i dont trust myself to drive yet, and ive run into people who stare or complain about me using the "disability area" of the train from people asking me to move from my set so people with a disability can sit there,im 16 i look healthy and i pretend to be healthier than i am. Im getting tired of having to explain myself and "prove" im disabled to people. Its to the point where i wonder about using a wheelchair just to stop the harrassment. I have balance and weakness problems and im trying to keep using my legs so i dont loose the muscle i still have. Does anyone else encounter this?

[GentleFlower]

Hello Matthugh

I look healthy and look really fit with a great muscle tone structure but I suffer from motor weakness, fatigue, seizures too and pain amongst other symptoms.

It was advertised recently that people on trains need to be more considerate because there is now knowledge of invisible disabilities. There are even new toilets that say invisible disability on them on high way services stops in the motorway now.

So you can either buy yourself a disabled badge to pin on your clothes to wear or clip on like pregnant women do which I wouldn't be that happy to do or one that says I need a seat please. Or with the disability sign similar to the signs you see of an image in a wheelchair, I'm sure they have something on Amazon.Or tell people to their face that you have an invisible disability.

I used to work in London and know how that feels, although I lost my job because I fell ill going home and that was the last time I stepped foot in london without crutches or my wheelchair.

However I know how selfish and cruel some or most commuters can be. You know your problem so be confident and not cocky just say it nicely say" I have an invisible disability and require a seat so please can I sit down or that is why I am closer to the door". You don't really have to go into detail or explain yourself unless you want to and a conversation starts with someone who is genuinely nice an interested etc I always take those opportunities to educate those who are unaware of oblivious to FND!

I really hope that this helps you out a little.... But us in the younger generation have that issue of looking too healthy to be disabled. And it's wrong.

Good luck on your route into london. Do update us if things improve 👍🏼🙂

[Matthugh in reply to GentleFlower]

Thank you so much, i was feeling frustrated when i wrote that. Ive more recently gotten back into doing martial arts again (trying to use muscles and see if they inprove) and finally going to consider going back into my work as an actor. Ive been speaking to my social worker and therapist about getting a dog for my symptoms. I have mobility, weakness and seizures too, although i have plenty of other things on the sidelines like panic disorders ,depression, and chronic migraines. I feel it might be a good route to consider getting a service dog for the many tasks id need help with. Have you found anything thats helps you on a daily basis? If you don't mind me asking =)

[GentleFlower in reply to Matthugh]

I suffer from mobility difficulties, motor weakness which is the same I believe as muscle weakness, dissociative seizures too, depression, anxiety, insomnia and all sorts from the list of symptoms mentioned on the neurosymptoms.org site like most people I've suffered almost all.

A dog is amazing when you are indoors and shut out from the world and helpful regarding encouragement to walk etc and great emotional support company for hugs and strokes it's relaxing.

However, it is difficult to look after the dog with FND. So I would suggest unless you have a partner you live with or friends and family who can help in the day to take the dog out or an accessible apartment, house or flat where the door can just be left open or a dog flip on the door for the dog to go in and out of the house to go to the toilet then it can be cleaned up later, then I would say not to get a dog. As you probably have noticed it is hard enough to look after yourself yet alone a dog?!

I have suffered 22months and I don't really find anything helpful. Except sleep when I can. I find being with the people who I love helps me forget my symptoms and it's a brilliant distraction. I am lucky to have a very supportive family though. I am still working on understanding my condition better because I want to have a family and children soon.

That's the best way to help yourself. Understanding triggers, discovering resting periods in your daily life to balance energy use as I suffer from chronic fatigue, things like that I guess. It's very hard. However I hope you find things to help yourself cope with your symptoms.

[DMA1664]

If you go online there's a disability card that you can buy for 16 quid for two years. Think you need to send proof like PIP, ESA or doctors letters. Worth a look. Been in the same position and how people really stare as well isn't pleasant. But hey be the bigger man and good luck.

[pickleweed]

Tell them that you have a functional neurological disorder, which is a brain disorder, that makes you weak, even though they can't see it. I've felt guilty when I've stepped out of my wheelchair in front of people, but I say, "I can walk short distances."

[Samigarrib]

Hello Matthugh,my name is Samiksha and I was diagnosed with the condition in November 2017.I am not sure whether anyone can compare to me but my seizures can last from 15minutes to 6 hours which is very debilitating.I am happy to hear that you can still get on a train and get from A to B whereas I cannot without being accompanied.Be proud of yourself and yes we should be recognised for Invisible Disability but at the same time you have a great approach to trying and being as normal as possible,keep strong and remain inspirational.....

[Matthugh in reply to Samigarrib]

I can almost relate to your experience! The longest time ive had a seizure was almost 2 hours and took at least a week to walk without tears,I cant imagine 6 hours.

Ive also found the thought of possibility having a seizure in public to be very upsetting so i tend to go nowhere without a friend, Being alone causes panic attacks for me now and its hard not to think of the possibility.

Which is why ive been looking into getting a service dog (cant handle a horse 🤣) .im an experienced dog owner and trainer, so it sounded like a decent idea. Ive done the research and read over the ADA law. Now im talking to my doctors to see if its a possibility in my future to be a handler.

Thank you so much for your insight.

Keep on being you!

(If you'd like to talk feel free to contact me =D)

[DNE92]

Hi. I’m on the FND Hope UK Board. At the moment I am putting a portfolio together because The Edinburgh Tram will only accept Disability Cards from Edinburgh residents and none others issued. It also does not accept the Older Person Bus Pass unless you live in Edinburgh. I intend to see if Age Concern Scotland and Alliance Scotland wish to get behind it. I’m then going to give it to a non-Government MSP to hopefully raise in the Scottish Parliament. I have also been in contact with 2 FNDers in England- 1 tackling the bus pass and another the London Underground because of the same reasons as yourself. PM me if you are interested in any of these. Cheers Lou McConnell- Trevillion.

[Matthugh in reply to DNE92]

Sounds great to me!

Good luck!