- Видео 97
- Просмотров 43 872
SassyFNDLife
Великобритания
Добавлен 17 апр 2021
This channel is all things FND related. I'll be posting content about my progress, setbacks, symptoms, equipment, coping strategies, treatment I receive and much more. Created for FND patients, carers, family, friends and anyone who wants to expand their knowledge on this disorder.
Urinary retention - 3 years later
3 years ago I made a video about going into urinary retention.
Lots of appointments and test later and I'm on the waiting list for a suprapubic catheter.
Jump to my video to see the what's and whys.
Lots of appointments and test later and I'm on the waiting list for a suprapubic catheter.
Jump to my video to see the what's and whys.
Просмотров: 178
Видео
Not here to "Live my life out loud"
Просмотров 7372 месяца назад
I don't post on socials to "live my life out loud" or to get attention. I've seen a few comments regarding this. I use these platforms to share my experience and here's my reasons why.
Using mobility aids
Просмотров 2454 месяца назад
Mobility aids are there to help us, guide us to move forward and not hold us back!
Neurology appointment about seizures
Просмотров 3236 месяцев назад
Neurology appointment about seizures
@TheBigCatSanctuaryUK The Big Cat Sanctuary
Просмотров 997 месяцев назад
@TheBigCatSanctuaryUK The Big Cat Sanctuary
Join me again for FND awareness day - 2024
Просмотров 2118 месяцев назад
Join me again for FND awareness day - 2024
Accessible hotel . . ? I don't think so
Просмотров 164Год назад
Accessible hotel . . ? I don't think so
Caterpillar to butterfly transformation 🐛🦋 @InsectLoreProducts
Просмотров 42Год назад
Caterpillar to butterfly transformation 🐛🦋 @InsectLoreProducts
The kind of support network we all need
Просмотров 333Год назад
The kind of support network we all need
I'm 17 with fnd and it's no fun
@@Fndwarrior oh I'm sorry to hear that. Fight for Neuro physio, it's incredibly helpful but you have to work really hard at it.
Great video, thank you for sharing on this topic…FND patients are often refused or discouraged from using mobility aids/supports in the medical sector. This leads to additional isolation and restrictions, it is a disservice to FND patients…cruel even. Mobility aids are helpful in managing impaired energy reserves, mobility restrictions, they improve accessibility and autonomy . So thank you for talking about this important subject 💜. Patients should not have to argue with their clinicians for access to tools that improve quality of life. Where are the double blind controlled studies to justify restricting FND patients from mobility aids? I can’t find them. Yet, patients are put under undue pressure not to use them. The approach is insane and leads to patients distrusting the understanding of the clinician’s knowledge on the condition. FND patients do not use mobility aids because they want to, they use them because they have too. When symptoms improve, the aids are naturally used less often or not at all. Patients should have the lead on determining what is most helpful for them without being confronted with theories that have not even been validated. It’s a disgrace with high cost to the the well being of patients and their carers. I admire you speaking up on the subject.
@@SusiBrown absolutely! I have been told they won't give me anything in the past because they don't want to disable me more from having it. But it would help me get better and eventually hopefully no longer need it! Luckily we saw a brilliant OT but not everyone is as fortunate. Like you said, we don't choose to use them but if we didn't we'd be even more isolated.
Thank you for sharing your story I was diagnosed with fnd in September and also have facial spasms which cause migraines
Such an amazing lady with an amazing other half ❤sending lots of love and good vibes to you xx
@@ToniRandall-v4n don't know where I'd be without him! Hope you're doing well ☺️
Sending you all the love sweetheart. Keep on keeping on. You're not alone and your partner is doing an awesome job too ❤❤ p.s lovely cat
@@chantelle1654 thank you! Really appreciate your lovely, encouraging words. Aahh she had to make an appearance! 💕
You are a brave lady Gabrielle , thank you for your Testimony 🕊️🌹
Excellent talk Laura 🕊️🌹Thanks so much ❤
💯 agreed! Guilt about sleeping during the day has plagued me from the beginning. I have spent lots of time trying to be kind to myself now and understand that the fatigue is not going anywhere and having a rest when i need to it OK 🫶⭐
@@FNDRevolution it's definitely hard to adjust to it and not feel guilty for simply resting. But we have to do what works for us! ☺️
💯!!! I was diagnosed 2 years ago and only no feel like i can share and help with others. Thanks for sharing ⭐🫶 #strongertogether
I was recently diagnosed with FND. Thank you for sharing your story. Stay strong. Your family love you.
@@Nathan-vn5tg thank you. Sorry to hear you also live with FND. I hope you're not having too much of a rough time if it.
I am From Bangladesh
Hi. Did you receive your diagnosis based upon a process of elimination with no obvious physical etiology?
@@hannosolo yeah I have MRIs and a lumbar puncture to rule other conditions out.
FNDers have experienced so much blame and shame. Over time their voice diminished…the silence is deafening. You’re an amazing mighty warrior, you’re videos are more valuable then you will ever know. FND challenges many current assumptions about the brain and body, it could be used as a bridge to expand understand but instead, it has been ignored and even ridiculed. I have great admiration for those with FND who share their experience and pull FND out of the shadows. You’re awesome❤
@@fndtogether-tnfensemble1228 thank you so much! That's really great to read. And you're so right, sometimes instead of getting help and support we get the complete opposite. I really appreciate your comments!💕
So sweet thanks
May I ask. Did you have a neck injury when you were young? I injured my neck when I was 21. I'm now 45 and only recently had an event which I thought was a stroke at first. But have been told my my GP that I have fnd. Basically I feel weak in my right arm and leg. Only 4 weeks now. Before this I was running and going to gym and working no problem.
@@moggyslifehacks1819 i didn't have an injury but one day I woke up when I was 12 and couldn't move my neck at all or sit up. Then that kept happening every so often and they said it was all the muscles spasming. Do they think that your symptoms may stem from your previous neck injury? I'm sorry for what your going through right now, it's such a massive adjustment. Are they offering you any help like physio, CBT or occupational therapy?
@SassyFNDLife thanks for reply. They don't know what's caused it. My GP thinks it was covid. I did have covid when the symptoms started so it makes sense. My right side of face now going numb. Trying to remain optimistic. They've started me on an antidepressant and referred me to neurology. God knows how long it will take to get seen 🙏 How are you keeping these days?
@@moggyslifehacks1819 unfortunately numb face is a common symptom of FND. I really hope your neurology appointment doesn't take too long, the quicker you get some treatment/guidance from them the better really. It's definitely important to try and remain positive. My symptoms are always there but I have good and bad days, so have to remind myself on the bad ones that the good will be coming back.
@@SassyFNDLife thank you and best wishes
So true for me this chanel has helped me a lot and has helped me to educate others so thanks for what U do ❤
@@moonshine-bule I'm so glad to hear it! Thank you for your comment, I really appreciate it and it helps me to keep creating 💕
@@SassyFNDLife would it be ok if I screenshot this and but it on my socials
@@moonshine-bule absolutely!
Love your videos ❤. I hope you have a wonderful time.
@@fndtogether-tnfensemble1228 thank you! I'm glad you enjoy them 😊
Thank you 💜💜💜💜
Hi angel luv u ❤❤❤❤❤
So basically the Consultant is cautiously ruling in psychogenic absences. This will be a most positive outcome with hooe for complete recovery.
@@lindasmith8771 yeah, ruling in the fact that it is most likely functional seizures 🙂
Well done lovely at least you’re trying and managing to walk with your rollater . You certainly are a fighter not a giver uped xx
Thank you! We have to try as best we can. I'm lucky to be able to get out and about, especially in the lovely weather we're having.
Me😂😂😂. Pretty much😎😊
You can relate! 😆
Thank you for sharing your experience. I was diagnosed with fnd in 2016. I don't feel so alone. Nobody understands what we go through daily . I fear when remission happens because I have to deal with ignorant people. " I told y'all she was faking".
That's awful you have to deal with those sort of comments. It's definitely real and is happening to you, never doubt that. It's hard to find others who can understand what you go through but I hope you find people who atleast want to try and understand.
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.
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.
@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 👍🏻
@@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.
Nice😊😊😊😊
Nice😊😊😊😊
Well done you…
Thank you.
Onito
Wow these are very good and so cute!. You should design t-shirts. 😀
Unfortunately I can't take credit for the designs as I'm practicing then out of the adorable drawing book. They're so cute though, it's a great book and can't wait to try more out!
@@SassyFNDLifewhy don't you havr a go at drawing your own designs. You can use those as your reference and develop some really cute characters. Those are quite simple it's simple graphical shapes and cute googly eyes. Maybe think of your favourite food and see if you can create a character out of it, doesn't even have to be food either can be simple objects. Just an idea if you are feeling creative. Love to see more of your art keep posting. I'm an artist too by the way and i also have FND. I love your channel and how you are raising awareness to FND. Keep up the great work! 🧡
@@angel79892 that's a good idea. I'm thinking definitely a chocolate chip cookie with a bite out of it! It's given me ideas to put into practice 😊 sorry to hear you live with FND too but thank you for your kind words and following my channel!
Amazing, can't wait to see that chocolate chip cookie character!@@SassyFNDLife 😀🧡
So glad you have been offered something
It certainly makes a change to be offered something on the spot and not have to fight for it.
The one with the hedges is a flower bed.. it’s not supposed to be accessible for anyone
Actually that's Horizon 22's rooftop garden which is fully accessible. Everything in this video is in it because it's accessible. That's why I have called it "accessible London" Lovely rooftop garden and highly recommend people to try and visit it.
@@SassyFNDLife there’s no way a wheelchair fits between those 2 hedges
@@CrispeeCrisps15 it's not meant to fit between those hedges, neither is anyone meant to walk there, that's just the garden.
Good for you, well done getting there. Its been nearly 2 years since my accident and finally accepted FND will be here for a while... so time to make my best life. Take care you
Acceptance is definitely the first step. I hope you're getting on okay. I continue to learn more about this disorder no matter how long I've been living it. Take care!
Thank you to all the warriors for this fun and informative video about FND. Great job!!!
Glad you enjoyed it! 😊
Hope the appt went well!
Thank you ☺️ update on that coming soon!
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
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
@@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
@@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
Wow you were brave but an amazing experience xx
I have on going neck spasms 24 /7..its jinn possession
Do u want to be boyfriend and girlfriend y or n
Your a very attractive woman
Your a very attractive woman Gabrielle
Are u single y or n
any health update??
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.
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.
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
Its jinn possession..i had seizures since ruqya its calmed down
Hope things have improved for you since this video - I have severe seizures myself and have fallen down the stairs - no fun 🥺
I've definitely had my ups and downs since then, like I'm sure many of us unfortunately have! Sorry to hear you experience them too, they can be quite dangerous! I've been told by neurologists that functional seizures can't hurt me but it really depends on where they happen!
@@SassyFNDLife Bless you. I don’t think Drs really know what it’s like to live with any type of seizures. I have Epilepsy myself, but even those have many types and a person can still fall - even with minor ones.
@@KCsBabies absolutely. I've known lots of people, myself included, who have hurt themselves from falling or during a seizure.
@@SassyFNDLife Sending hugs 💐
Congratulations on getting in your feet. I hope your progress has continued to grow. Truly inspirational 🫶
Thank you! There have been ups and downs but the ups are always amazing and far out weights the downs.
@@SassyFNDLife Yeah, the up’s make everything worth it. 🫶
Amazing well done you x
Thank you! X
I'll do this later tonight! Where should I send it? I'll also message my fellow FND havere
Ah brilliant! You can email it to me, or if you have Facebook, Instagram or Twitter it may be easier to DM me. I'm at Sassy FND life on everything. If not I can give you my email.
Günaydın güzel siz kız güzel
I get an aura before I go into a full scale seizure and can usually get to a safe place to have my seizure, though sometimes I go into an absence seizure right in front of other people. Some people who are aware of my seizures notice my absence seizures and try to bring me out of them . The one person who was most familiar with them though, has died.
I'm glad you can usually get into a safe space but it can take a long time for someone to be familiar with the seizures and guide you through them, I'm sorry to hear they have passed.
I’ve just been diagnosed with FND in Wednesday
Sorry to hear that. Have you been offered any help, treatment or support?
@@SassyFNDLife not as of yet but slowly coming to terms with the FND diagnosis any advice or support would be appreciated greatly thank you in advance x
@@theautisticcat198 have you thought about asking your GP for a Neuro physio referral? And I know CBT/talking therapy can seem scary or not worth it but it's good to talk it out with someone, especially when you've had a diagnosis and are living with a disorder that's changed your life.
@@SassyFNDLife I’ll request that