Worrying : Hi all, I've just wrote to... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Worrying

β€’18 Replies

Hi all, I've just wrote to englishmum, if any of you read it I hope you will help to answer, haven't been great since last week disastrous appointment at St. George's, just don't get over the seizures well anymore, when I was having loads it didn't hit me as hard as it is now, unable to write all again, I got a cancellation for my last appointment in London next week. This is the one I'm hoping will tell me if they can and will help me as an inpatient there, I'm scared 😳 they will just go on again about past history that I've never had, I've never been ill, I've never had an operation, no ones died close to me. I've never had a migraine. Am panicking, hidden in my mind as don't want to upset 😭 my partner, he has to get me to appointments, get me through the painful seizures at every appointment without knowing how worried and scared I now am. This is my last chance to get help and move forward with help, I've had none yet from any professional I've seen. I'm scared they will say the same answer I've had (too severe and complex) for us to deal with, can't face it being said again and just left. 😭😭😭

18 Replies
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EnglishIslander profile image
EnglishIslanderFND HopeVolunteer

Please try to stop worrying. Ive been through this and it doesn't help. Try to look forward and rest as much as possible. Professor Edwards will not stop until he's found a way to help you.

I too am waiting for inpatient treatment again so maybe see you there :-)

Hi I think the fact you are diagnosed with FND and being seen means you have a disorder that they should be doing something about. Also I would tell them that dealing with FND is bad enough but this whole process of being placed in the depressed etc box 'has been unpleasant' maybe not use stressful so they can put you in that box but be firm you will not continue with being mislabelled.

I did grow up with a not so great childhood but I had great friends and support, and had great coping skills from a very early age. I know you don't have this but I'm just saying I actually thank my parent now for making me become the person I am. I observed them then learned to do the absolute opposite of everything they did. It made me determined to get to where I was in life (before being diagnosed with FND) I had a great life and it also made me more aware of others in less fortunate circumstances and through work I would work more closely with those people. I can feel when someone is having a hard time and I want to help. Even when I came back to the uk I met someone going through a hard time through bullying (something I want to eradicate, need to speak to Bill and Melinda Gates) and not having any help and although I was unwell it sent me on a mission to get some answers. I hate to see people hurting.

Previously Said person although I have changed my phone numbers a million times over the years still manages to get a recent number and call me maybe once a year. Usually to deliver bad news. I take this news then say goodbye then don't think about them again. They do not cause me or ever have depression etc. I am stronger than that. And they are weak.

But I have went through this too. I saw a CBT person when I came back here and she was obsessed with talking about my childhood. I told her I don't think about the bad, only the good but she even went as far as to say 100% of people who have went through abusive childhoods go on to abuse others. I was highly upset at this as I have spent my life caring for others and am proud of that.

I even worked as a bouncer years ago while studying, me and 12 guys in a nightclub and we had a chat and decided if we saw anyone leaving at the end of the night with young girls who were a bit worse for wear we would stop them and ask them are you a couple, ok what's your girlfriends/boyfriends name. Usually the guy would have a smart answer and the girl would be too drunk to talk. So we would separate them, put the girl on a chair in the cloakroom, get the staff to keep an eye on her and we would all put Β£1 in to get her a taxi home. We ignored ranting male thinking he had scored and asked him to keep moving outside then we would give the taxi driver Β£13 and ask them to take the girl home. In those days that amount covered the whole of Edinburgh. It made me feel good to work with guys who felt the same. Let's protect these young girls.

So when it comes to psychology I think it's total hit and miss. I realise some get great psychologists but there are also many out there trying to make a name for themselves.

This person I saw described me in words I have never been called in my life and when I politely challenged her that that was not me at all, she waved a book around by an author she had just read that said the part about 100% of abused become abusers. I told her as I come from a health background that I understand there is a proportion of people who do. Iv worked with families where children see so much abuse then act out, and I know that many sexually abused children go onto become paedophiles from my studies.

But her words upset me so much because I have dedicated my life to protecting children that I saw another psychologist who did a thorough assessment and is higher up the food chain than the previous one and she told me 'you are none of these words'.

It was causing me tears and sleeplessness and in the end was just an idiot with bad views. I even told her, iv studied 3 undergrad degrees and a masters all with psychology in them and although I'm not a psychologist I have written a lot of papers and many years ago to prove a point that psychology can have polarising views I wrote a paper that was absolute junk but I backed it up strongly with obscure references just to see if I could get a pass mark for writing something that was really just off the top of my head nonsense and I got a pass mark for it. Goes to show. There are no concrete right or wrongs in psychology.

I also told the 1st psychologist waving her book. In a few years time someone will come along and debunk this authors theory as this is the norm in psychology. She couldn't be swayed even when I said and many health professionals agree with me that you could get the DSM-V and get everyone you know and going through symptoms diagnose everyone with a psychiatric disorder. This is because you only need a certain number of symptoms in each disorder to be classed as having that disorder e.g. Feeling tired all the time (I did when I worked a 90 hour week), or having headaches!!!!!!!! 😬✌️

β€’ in reply to

Ooooh you sound lovely, I used to go clubbing but always left with my friends, others as we all know aren't as lucky. You and your friends were great helping young girls learn and safely home. I hope lovely people like you are not becoming the minority, if you were the majority more people would go out and have fun but not learn the hard way. I'm exhausted just getting up now in the morning, it takes hours to un scrunch and less pain. Hate going to bed knowing what the morning has in store for me but can't stay in bed as in pain there too, roll on midnight it will be better then. Thank you for your lovely reply. 😊 Lisa

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My brother also worked as a bouncer when younger. Once this Chinese lady who comes round all the pubs at night selling single roses was being abused by some drunk guys. My brother and his colleagues took them outside and had a quiet word with them. He is also anti violence, and the roses lady became good friends with the bouncers. They would watch her as she walked from pub to pub and scare off anyone being mean to her

β€’ in reply to

Thanks for the lovely comment.

I also used to do security backstage for concerts many moons ago. It's less glamour than it sounds. 15 hours of running around like a maniac keeping everyone happy.

But once 9pm hit and the main band was on stage, if it was a boy band and I'm talking the time of boyzone, westlife, five and steps, all lovely people, I would go up on stage and sit next to a roadie tuning guitars or something and watch the crowd for paedophiles.

You could see them a mile off. The crowd would be all these girls going crazy, also mums, then dads looking bored but it was the men not watching the stage, not moving around or clapping or talking to their daughter, they were busy scanning the young kids.

I would get on my radio to the floor supervisors and say 'section H around row 12, describe the guy and say pull him out.

Supervisors would be running and the guy in question would leave quietly. It was either that and wait for the police and no way were they waiting to explain their 'innocence' at a kids concert with no kids 😬

nurmihusa profile image
nurmihusaβ€’ in reply to

Creepy!

β€’ in reply to

Sorry forgot to say I get your pain. I used to gaze at my bed pre accident and say I love you bed. I loved sleeping. It had to be 8 hours.

Now I go knowing il be up in 2 hours to take pain meds and move around the bed. Then a few more times. And mornings are a killer. I'm still sleepy but my lumbar spine is saying get up stand up and it's taking 3 hours to stop the pain from moving around. Bought a new bed today so looking forward to trying to get a full nights sleep when delivered πŸ˜ŠπŸ‘

β€’ in reply to

I loved my bed too, I use to get pillows all plumped up, sweets and crisps and relax and read a good book. Can only read now on iPad, I downloaded kindle and my dad bought me a stand for it so my neck doesn't bend, I never remember what I've read but enjoy still being able to read. I never even thought of peodaphiles at concerts but now realise as you've put, an ideal hunting place, what a world we live in, those little innocents enjoying their favourite bands, mind you am jealous πŸ˜’, I loved westlife myself, loved their voices. Shame they all split as bands today are not as good.

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I worked with some military guys and we did long shifts and when we got home I got them all telling their beds they loved them. I wished I'd been there to see them πŸ˜‚

At home I used to have candles on and a selection of books depending on how tired I was. I can't read now apart from a little in bed. I need to get a stand as I can't bend my neck. It's really frustrating. And I switch off really quickly when I used to be able to speed read. I guess a little is better than nothing. Glad you have kindle.

I was pretty protective of the kids this was in the years when people camped out for tickets so I worked at the SECC and the big boss saw young girls sleeping in a bus shelter so he decided to open up a hall, have the lights and heat going and 2 female security to work night shift looking after these kids. We would queue them up for the morning ticket sales. They would be up all night singing westlife songs etc. So we got to know a lot really well. some were crazy and would travel all round Europe - on their pocket money, going to every concert so they would tell you everything. I was always saying how much pocket money do you get?!!!!

β€’ in reply to

Sounds like you have so many great memories, lots of laughs and an unusual past, this stand is brilliant for my iPad, unable to work up to date phones so this has been a lifesaver and especially for reading, can't describe what life without my iPad would be. I private messaging my family as struggles on the phone, at least I can contact them when I remember. As for pocket money, my brothers and I had to wash, wipe up, put away, walk dog, tidy bedroom but wouldn't say we got a lot as mum and dad had to work, but we value money as we never had a lot and we all used to clear up wherever we went.

β€’ in reply to

Yeh I like variety in my work life so iv mixed it up a bit, I get bored easily and would rather run around crazy for 20 hours than sit reading magazines. Sadly that's on standby.

I like my iPad that's when i usually respond here and check all my emails because I'm in bed and can prop it up.

I think we got an ice cream from the ice cream van growing up. Kids today πŸ˜‚

Hey was just thinking should we all say we are on standby with our FND? Meaning we can daydream about what we will move onto in our lives as we are going to get the better of this. πŸ˜ŠπŸ‘

β€’ in reply to

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nurmihusa profile image
nurmihusaβ€’ in reply to

On stand by. Yes. That.

nurmihusa profile image
nurmihusaβ€’ in reply to

Sounds like you were dealing with...an abuser. Her "treatment" certainly sounds like abuse to me. Just sayin...

Yes she was physically and verbally abusive but very convincingly lovely to outsiders. As I got older I gave her warnings that if she didn't stop nasty phone calls etc i would desert her. She never believed me until I actually did it 8 years ago. Best decision ever.

The worst thing was I actually felt sorry for her as she told me she grew up in the same situation so I thought she didn't know any better.

She also also isolated everyone so I don't have any family, just one uncle, he doesn't talk to her, and he has been an eye opener as iv had chats with him since I came back to uk to find all the stuff she told me growing up was lies. She had a perfectly normal childhood. She has no excuse for her behaviour. She has everyone fooled.

Lisa-anne.

There are "more chances" for us. New options open up every day. Allow the fear to subside. The "chances" we get will increase.

Much love to you my sister. My best to Trevor.

Dan / Seattle

β€’ in reply to

Thank you 😊 dan, and I hope your better and your daughter is better too, much love to you and all yours, Lisa and Trevor xx

Dear Tobie, I'm glad 😁 your still getting out, at least next week I'll know wether I'll get help or not, it will be a decision made and I'll no longer be in limbo, just got to get there and find out. Will post outcome if any when able after Wednesday. Am so glad I've been able to help you it gives me pleasure. Big hugs πŸ€— Lisa xxx

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