Step into the life of FND

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Step into the life of FND

Рет қаралды 2,889

Күн бұрын

Step into the life of FND through three lovely ladies who have been brave enough to share footage of themselves with us and have told me about some if their experiences and life changes since having FND.
They've kindly helped me with this video to raise awareness of functional neurological disorder.
Trigger warning! please don't watch if you are likely to be triggered, video contains footage of seizures and tics.
I understand this could be distressing but it is important for others to see what an FND warrior goes through on a day to day basis. Many people still don't believe in FND and that's extremely frustrating for those who have to not only fight it but also constantly explain what they're going through.
Special thanks to -
Elliemae
Carlene
Pauline
and Elliemae's guardian Sharon for giving me permission to use these videos.

Пікірлер: 33

@katiemac85 3 жыл бұрын

I totally understand the grieving for you previous life! I feel the same. Thank you for continuing to raise awareness x

@SassyFNDLife 3 жыл бұрын

It's hard not to think about the person you were before and not miss them. Like it's a completely different person at times! X

@lovefromrosecottage 4 ай бұрын

Just came across your channel and subscribed. I have FND after being diagnosed last May. Thank you so much for sharing and raising awareness ❤️ xxx

@SassyFNDLife 4 ай бұрын

Thank you for subscribing! Great to have you. Sorry to hear you're also living with FND. I hope you're coping okay and getting any help you may require. Xx

@lovefromrosecottage 4 ай бұрын

@@SassyFNDLife you are very welcome. I live in the North East of England and my GP has never heard of FND so its a struggle to get some answers, however I do have an appointment this summer with a neurologist that I've waited over a year for after getting diagnosed in hospital last May. I hope you are OK too and I think you're doing a great job highlighting this illness as it is so misunderstood. Kind regards and take care xxx

@SassyFNDLife 4 ай бұрын

@@lovefromrosecottage sorry you've had to wait so long but I'm glad you're finally seeing someone and hopefully they can offer you some support 🤞 I'm actually seeing a neurologist in London this Wednesday who I've never seen before, so I'll most likely have a update video soon. Thanks again! Xx

@loritrudeau4782 2 жыл бұрын

Thank you for making this video.

@wytewillow00 5 ай бұрын

Hi! I’ve just recently been diagnosed with FND. I not only have FND but also Dysautonomia and Fibromyalgia. My life has been a living h*ll for the past almost 20 years because I couldn’t get a doctor to listen to me while my symptoms just kept getting worse. Finally in November 2023 I got a neurologist who did listen and didn’t just quit after 1 test (usually a MRI to look for MS)! I never had even heard of FND until this past February! My doctor explained it well to my husband and me. Many days I have a severe stutter now. I kept telling the doctors that it felt like my hands didn’t listen to my brain or that my legs decided to go where they wanted to while I wanted to go the other direction!! I use a mobility scooter to get around if there will be too much walking. I hate going into restaurants while walking because it always looks like I’m very drunk :( I’m coping with using “spoons”. It helps, but sometimes I have to borrow some of the next day’s spoons. Between the 3 diagnoses it’s been hard on my husband with the mental part of this. I have anxiety and emotional dysregulation. My husband tells me how strong I am, that he would have given up on life a long time ago. I don’t feel strong when I’m in severe pain.

@SassyFNDLife 5 ай бұрын

Sorry to hear you've had such a rough time of it and it's taken you so long to be understood and get the diagnosis you needed. Terrible how long it took and all that time without support! I've also have the "are you drunk" comments multiple times and it gets more and more infuriating. It sounds like you're a very strong person and massive well done to you to keep going and fighting for the diagnosis! I hope it helps you and that you have been offered some form of support through this.

@Truerealism747 3 ай бұрын

Do you have heds I have CFS fybromyalgia classification years I've had pots to.now diagnosed autism ADHD fnd is highly comorbid with fnd ime awaiting to do sleep apnea test and try ADHD meds for pain 27 years CFS 6 years fybromyalgia which all same condition and lost my mum.last year to severe ms heds autism in to

@MikSonus 10 ай бұрын

I’m glad I discovered this channel. Very inspiring.. warrior queens 👑 ❤️

@SassyFNDLife 10 ай бұрын

Thank you! I'm glad you found it 😊

@MikSonus 10 ай бұрын

@@SassyFNDLife ❤️

@harlows.journey 2 жыл бұрын

I feel so invalid because I didn’t have a sudden “oh no” moment. I haven’t ever been the healthiest. It slowly got worse and worse until I could barely walk.

@SassyFNDLife 2 жыл бұрын

Everyone reacts differently. Doesn't make you invalid at all. I'm sure you're not the only one to have felt that way. Sorry to hear you can barely walk.

@tinanash194 7 ай бұрын

I can relate to soo much of this. I live on my own and it can be very frightening at times.

@SassyFNDLife 7 ай бұрын

I can imagine living on your own is very scary when you're having a rough day/days or even weeks with FND! Do you have anyone come in to support at all?

@tinanash194 7 ай бұрын

No I don’t

@tinanash194 3 ай бұрын

Me too and I live in a flat with stairs.

@brianbordenkircher52 3 жыл бұрын

I miss my old life

@SassyFNDLife 3 жыл бұрын

You aren't alone. I've spoken to lots of people who have grieved for their old life. I have too. I suppose it's all about adapting. Even when we don't want to

@ktrean2054 2 ай бұрын

Oh gosh Pauline's walking symptoms are exactly mine. This has helped to much as you start to doubt yourself. Its so hard to understand whats happening.

@SassyFNDLife 2 ай бұрын

I'm sorry to hear about you're walking symptoms but glad you know you're definitely not alone! Sometimes your mind plays trick and you start to worry but your walking symptoms are very much real.

@ktrean2054 2 ай бұрын

@SassyFNDLife Aw thanks. I have stroke like symptoms with numbness in my face and sometimes I can't walk at all. Every episode leaves me exhausted. I was a very fit, active person before this, you definitely feel liked you have been robbed. Thanks for sharing 👍🏻

@SassyFNDLife 2 ай бұрын

@@ktrean2054 totally understand where you're coming from. I was a community carer, walking about everywhere and then I went from being a carer to being cared for with all these symptoms to wrap my head around. It's a slow process to accept this new lifestyle! Something we'd never thought we'd have to do.

@paulinepreston5789 3 жыл бұрын

You are so right Sarah - the strain on the joints is awful - they become very painful. I already have a meniscus tear in my knee on my weak side.

@SassyFNDLife 3 жыл бұрын

Ouch 😬 sounds painful. I'm currently waiting for a knee brace to be fitted, just a fabric one to hopefully prevent some of the snapping backwards of the knee.

@paulinepreston5789 3 жыл бұрын

@@SassyFNDLife aw l really hope it helps you

@julanekeen482 2 жыл бұрын

Hi such brave people . I’ve just been Diagnosed but I have no understanding of find can you help please

@SassyFNDLife 2 жыл бұрын

Hi there! Are you getting any follow up appointments with neurology or physio? The FND Hope website has good information on it and if you're on any social media platforms (Facebook or Twitter) you can join the FND Hope groups on there and that community is very helpful at coming together to help with any questions. If you have anything you would like to ask now I'm happy to answer to the best of my ability!

@mattrozdoba5660 11 ай бұрын

Who took the vaccine prior to being diagnosed?

@SassyFNDLife 11 ай бұрын

Not me. I was diagnosed over a year before the pandemic.

@tinanash194 7 ай бұрын

I e only had the first one Astra Zenica but I won’t have any more. I heard they can cause neurolocal problems. My FND started before the pandemic but I ignored the symptoms and put it down to clumsiness, being accident prone etc