Stories are in no particular order

Walter Louden I think the big benefit is being local and in some way small because you know people as individuals

Zoe Harland

Can't thank Michelle and Darren enough for the on going support they have been showing myself and my family,you go above and beyond to always help in any way you can .I really would be lost without you both, thank you so so much xx

Tracey Ball Your both amazing💜💜xx

Sharon Vernon Welcome Sam everyone is very friendly here so do reach out and ask if you need anything

Lynsey Hutchings It's tough.........watching your baby go through something you can't stop. So many of us on here have been there and done that.
A few year ago I got myself in to such a bad place. My child was at school. I wouldn't even go for a wee incase the school phoned me .......
This group is full of fab people who are always ready to listen and surpport you x

Stella Mcvee It's nice to have friends whom care about you x

Julie Cooper You are very welcome 😍💜 you are both amazing with all you do & more 🥰Thanks for all your support take care luv Julie xx

Julie Cooper You are amazing 🥰hope you & family are all well. 💜Take care luv Julie xx

Closed group member I just wanted to say thank you for all your support and help Epilepsy Sussex. We have learnt more in the last few weeks than the last 3 years.. wish we had met sooner ... you do an amazing job and as soon as we can we want to help out more xx

Julie Cooper It was amazing to have friends who care🥰 Michelle is wonderful 💕 take care luv Julie xx

Closed group member Thank you I'm starting to see that this group is so nice

Julie Cooper When you are ready, & big thanks to Michelle & Darren take care luv Julie xx

Thank you Michelle😍💜for your support earlier take care luv Julie xx

Nardine Parsons

· Hay guy's I would just like to thank Michelle shrieves and the team for kindly picking me to receive one of the medical I'd bracelets, i am very grateful

Closed group member  Thank you nice to see you and your hard work will help lots of people

Closed group member I want to say a big thank you to Michelle Shrieves and Darren Shrieves for all there support and help last night. I will try and talk more so please bare with everyone on here. Big hugs to you all

Closed group member Thank you so glad to find support. You have supported lynette when she needed it

Thank you Michelle & Darren for my brilliant bracelet that turned up today!😘 Take care luv Julie xxx

Cassidy Megan Hi, Thank you for having me in your group. It is an honour to be here. Love all your photos, Thank you also for all your support of Purple Day 💜 Keep up the great work and if I can ever help please let me know 💜

MICHELLE  GROUP MEMBER  AUG 2017

So this time next week my baby girl will turn 18 and

officially being adult . Over the months we've been asking

you to tell us your stories about your battle with Epilepsy

so I thought I might tell the story from a different perspective.
I'm going to tell the story of how epilepsy has affected our

life as a family and how it is changing as Vickie changes

from a child into an adult.
Vickie​ was officially diagnosed with epilepsy when she

was 11 she was having up to 200 absence seizures a day

and I remember taking her into a GP surgery and he said

don't bother to tell me what's going on she's had two

seizures since You've walked in the door. Her first major

seizure was on the 6th of June 6 years ago when she was

that a British blind sports event we had the dreaded phone

call, can you come quickly please we've had to call an

ambulance. When we arrived Vickie was on the floor

surrounded by paramedics and first aiders and I could see

that she was in a full tonic clonic seizure this lasted for

45 minutes and was I think the beginning of our real

understanding of how epilepsy can affect a family.

Her sisters suddenly had to learn how to deal with a

seizure we could never be very far from home and soon got to know paramedics on a first name basis. The schools couldn't cope so year 8 was her last proper education.
All her life Vickie​ has had issues from being visually impaired from having dyspraxia and dyslexia and processing problems but she just adapted and got on with it even becoming a

St John's first aider when she was 10.
But the epilepsy didn't give her a chance to adapt .To stand by and watch your child seizing for over an hour and a half and not knowing if she's going to pull through is every parents worst nightmare but every time we've gone down that road she's pulled through and we thank god daily that she's still here.
As she turns 18 she is dealing with 5 different seizure types and desperately trying to fit into the stereotype of being a young adult.
What breaks my heart is she so desperately wants to go out and get a job she desperately wants to be able to drive a car but she knows neither of these are possible.
People ask me was it worse dealing with her epilepsy when she was younger or is it worse dealing with it now, as a parent it was probably harder dealing with it when she was younger but for her it's most definitely harder dealing with it now.
At the moment Vickies epilepsy is pretty drug resistant but as a whole family we hope and Pray that one day a new drug will come out and she will be seizure free.
We couldn't be prouder of our daughter even though she is struggling with her own epilepsy she is still a huge part of epilepsySussex, actually she's the reason                                          exists.
When Vickies epilepsy was first diagnosed we had no support even though her pediatrician was amazing there was still no other support out there, hence her being the soul behind epilepsySussex if we can we want to prevent other people having to struggle without any support.

Closed group member

Hazel passed away suddenly at the age of 17 years on the 5th of November 2007. So almost 10 years now but never forgotten. She had Epilepsy we think from birth but only started taking medicine at the age of 11 years. We knew about SUDEP due to myself also having had Epilepsy since the age of 16. I found out about it on Epilepsy Action. She left myself, her Mum, her Dad Jon, her sister Kim & brothers Zack 13 & Jake 10. She also left 3... sets Grandparents! Aunts, Uncles, cousins & some wonderful friends who we are still in contact with. Now we have 3 gorgeous Grand daughters who Hazel would of loved to meet, one of whom shares Hazel's birthday on Christmas Day! Thoughts & prayers to all the other families from all of Hazel's family & friends

Closed group member

I had no idea that I had it.
According to my Mother, I had it as a kid. At 47, 48. All types of seizures just out of the blue. Bamm. Thrashing violent ones silent ones. I would go void.....wake up somewhere else. Freightnig stuff.

Closed group memberThank you so much for adding me. And thank you so much Michelle Shrieves for our chat really do appreciate it, it really has helped me...xx

Closed group member

I never heard about SUDEP until 3 month's before

Anthony passed

away, he had it

from the ave of

10 month's, and

passed away

at 22, was the

worst day of

my live as I

foung him,

Anthony King

was 22 when he died of SUDEP

Closed  group member I was 15 when I was diagnosed my Dad knocked on my door and asked me to take care of a couple chores when I was done with my homework. I get up to do it and he saw me drop to the floor full on convulsions. Based on written progress reports and report cards from teacher comments going back to grade school doctors believe I had it for years prior to diagnoses

Julie Ann Ward

13 July at 21:57

Epilepzy Sussex are so great . Don’t no what I would of done without them the last two years . Don’t have to wait one year to see them and they make sense what they say . Easy to understand them

Su Knight It makes such a difference that you are so local, approachable and accessible. So much better for residents here. You have certainly made a difference to me knowing you are there most of the time should we need you. God bless you all! xx

Lynsey Hutchings Number 7. Epilepsy sussex are a great, amazing, fabulous charity who not only offer great advice but sometimes just listen. Also do good hugs

Tyrone Darling to Michelle I'll have a chat with them, thanks very much, appreciate your help/advice x

 

                                                    blog from a member Ayesha Care:   Epilepsy,E, myself & I

The Epileptic One

It’s been a while since my last post – too long in fact! So here is a really long

one to make up for it – there will even be a second part to it in a separate blog

because I have too much to say so stay tuned! Some of it covers my personal

views about sensitive topics (particularly terminology) which you may disagree

with and that is absolutely 100% okay. Please feel free to disagree and discuss

your thoughts with me and/or others, but keep it nice. Keep it polite.

Remember to be kind. 

It’s been a busy few months; I’ve moved into a flat with my girlfriend,

had more medical appointments and diagnoses than I can keep up with and

amongst everything else, bagged myself a part time job. More good news is that

 my seizures are less frequent with a higher dose of medication

(and some others thrown in the mix), just the final changes to get the perfect

balance and I should be set!

Fingers crossed, eh?

Now, this job. Okay, okay, its only part time and okay, its only in a retail outlet

but it was a job and with a job comes money. But as well as money, a job gives you

a sense of purpose, a bit of freedom and a bit of independence; all things which seem to disappear when seizures feature frequently in your life. I felt a sense of normality returning to my life; I had something to talk about when people ask ‘so what are you up to now?’. It proved to both myself and others that there is more to me than just my epilepsy and that I will keep going to have the most ‘normal’ life as I can. I got some negative feedback for not having a higher paid or more prestigious role, but it didn’t matter because I felt like I was making some much-craved progress. I started to feel whole again. I (for once) took my own advice and listened to my very own secret to success.

Now, you might’ve noticed that I’m constantly using the past tense in reference to said job.

Let’s wind the clock back.

But first, a quick note.

I will not be mentioning at any point the company I’m referring to. As some of you will know, I am not a fan of naming and shaming; whether that be a large company or an individual person. People from all walks of life can learn from the story I’m sharing without disclosing the name of the retailer in question – if you know who I speak in reference of, be respectful of my wish to not disclose this information. The messages conveyed and incidents detailed below are incredibly important, the company name is not.

It was a really shit week that week and I’d taken myself into town to buy myself new pyjamas to be comfortable at home in – in addition to AEDs, I’m undergoing treatment for suspected endometriosis for which I get abdominal swelling so badly, I can’t wear normal trousers (plus, who doesn’t love comfy clothes? You can never have too many!). I saw an advert in the window to assist in a small store branch for 20 hours a week. On a whim, I applied and was pretty chuffed when I was offered an interview. Within a week I was offered the job and invited to a training induction – somehow, I squished my swollen belly into some work appropriate clothes.

In terms of disclosing epilepsy to an employer, that is up to the individual. There is no law here in the UK which dictates that you must inform an employer of such disability, however there are advantages to doing so. Most importantly they can carry out a risk assessment for the tasks you are to carry out as part of your role and implement appropriate care for you if you become unwell at work. However, as in the past I have been offered jobs, only for terms to be changed or the position to no longer be available when disclosing my epilepsy at the beginning of my application process, I chose to reveal this information about myself once my contract had been signed. I had no information to indicate that this company had a history of discrimination but I was at a point where I had to put myself first and couldn’t face coming this far only to be turned away (again). I am really pleased to say that they took this in their stride, arranged a risk assessment and really seemed engaged in supporting me while at work. To this point I have nothing but praise for them and wish I could properly credit their work and support taking me on as an employee and making reasonable adjustments as and when I needed them. 

It goes a bit downhill from here, when I was branded as ‘the epileptic one’.

“The Epileptic One”

“Where’s that girl? The epileptic one, she here?”

They didn’t know I could hear them. They didn’t know I was crouched behind a stand, basically right next to them. They didn’t know the impact it had on me as my inner self wanted to curl up and disappear. I wanted to melt into the floor; blend into the stand of stock I was tidying or even just stay where I was, crouched down and out of sight.

I stood up and looked into their eyes. I had no emotion to show. Thoughts racing around in my head; thoughts which had no words attached to them.

I have a name. My name is Ayesha. It may be a little hard to remember, you may say it wrong for a while, you might have to (not so subtly) read my name badge or find my name on a sheet somewhere before calling me over. I understand that and all the while you are trying to remember my name and trying to get it right, I’m happy. But to publicly announce my medical condition in such a derogatory way hit me so hard; much harder than I ever would’ve guessed. Based on my experiences with the higher management (who carried out my interview and risk assessment), this was the very last thing I was expecting.

I am not the epileptic one. I have epilepsy, epilepsy doesn’t have me.

In that moment (and for the rest of the shift) I could not associate with all the progress I thought I had made. I felt dissociated from myself and my identity and maybe for those few hours I fit into their perception of ‘the epileptic one’ as I unknowingly tidied the same items multiple times and didn’t react when my name was called; absence seizures. They called me the epileptic one and for a while I felt like it too. I spent a few days in bed and wondered how to progress from here. The anxiety I had pushed aside to get the job was back; what if, what if, what if? Oh god, oh god, oh god.

The next day, I dragged myself out of bed, made a cup of tea and plonked myself in front of the laptop where I drafted, scrapped, redrafted and drafted again a letter to the store. They are continuing to attempt to resolve my concerns. Whether I will return or not, I am not sure. I don’t know how to return to an environment having been pigeon-holed so early on (just 5 weeks in). However, they too are entitled to their say and I will absolutely give them opportunity to resolve as much of the situation as they can. Or maybe I had the right idea before and should go self-employed. Maybe, maybe, maybe.

 

This whole experience does pose the question of if ‘epileptic’ is deemed an appropriate term to use when speaking in regard to someone with epilepsy. Maybe this scenario hit me even harder because personally, I do not associate with the term ‘epileptic’. As said previously, I have epilepsy, it does not have me.

It is important however to recognise the significant effect of context in either case (whether you use the term epileptic or not) as my experience was derogatory and discriminatory. There was no reason for the individual(s) in question to even mention my epilepsy, even if they could not yet remember my name. Many individuals refer to themselves as epileptic and that is entirely up to them. Even considering this, I can think of no situation where requesting for ‘the epileptic one’ would be deemed as acceptable.

What are your thoughts? Is epileptic a term you are comfortable to use or not? Or do you have no preference? I’ve started on doing some research into this for an upcoming post and would love to hear your thoughts – let me know via the contact page! No names or personal information will be included, just a summary of people’s opinions. There is no right or wrong answer; let me know what you think!

In the meantime, keep being you and your badass self. Whether you identify as epileptic or having epilepsy/seizures or are simply reading this out of interest/support, you are wonderful and so loved.

If no one has told you that they love you yet today; I love you x

 

 

 

 

 

 

 

 

Closed group member Walter louden is my nurse and before him i lost faith in the nhs. I did not except i had epilepsy and he has been amazing with so much support. He gave me this site too and Michelle Shrieves has both support me and helped when i was having a bad seizure. Thank you for all you do and to the group members stay safe and kept smiling i know its hard but we are strong xx

Closed group member Michelle Shrieves thank you ❤️ this group has been great from the moment I joined it xxxx

Kris Payne 95% of that praise must go to Michelle and Darren who work tirelessly to keep EpilepsySussex up and running, thank you both for what you do

Julie Cooper Hi I am not Sussex lady, I am good friends with Michelle 🤗 I was from Essex origianally moved to Cornwall when I was 10. I am supporting these as Michelle & Darren been good support to me 💜take care luv Julie xxx

Closed group member Michelle Shrieves yes I know and am forever grateful. You are all amazing and always know where you are to get help. Thank you again everyone! X

Michelle Shrieves Sharon Vernon I do remember that first meeting well, you and mum in the back of the welfare van, we love helping you all xx

 

Sharon Vernon Michelle Shrieves you spent hours talking to us and helping us we want to help you more and promise in the future we will x

Sharon Vernon Totally agree when we found you guys we just felt like we had friends who understood and could help! As you know on many occasions you were wiping our tears away. You are a charity that really helps not just blind words xxx

Julie Cooper Thanks for all your support today Michelle 💜💜just listening to me means so much take care luv Julie xx

Victoria Shrieves I must say how proud I am of my mum and dad and the support they have given to everyone including myself. Along with the rest of the charity members who also provided support

Julie Ann Ward Hi Karen you will get the answers you need from Epilepzy Sussex . It will make sense the way explained . We support each other . Your not alone and never feel like that

Julie Cooper Thank you Michelle 💜& Darren💜 for your support & friendship.💜🦋 R.I.P. Hazel 25/12/1989-05/11/2007 Take care luv Julie xx🦋💜

Chloe Stanton It was thank you and Michelle Shrieves so much, dad had a fab evening. It's good fun x

Maureen Payne

How did you manage to get a photo with Kris in it? Well done to you all hope you have raised lots of money and awareness for Epilepsy.

AYESHA GROUP MEMBER

 

Welcome!

I’m Ayesha and I’m 24, living near Brighton.

I have Epilepsy; a neurological condition which prevents my brain’s electrical signals from regulating themselves as they should.

Some days are good and I can do almost

anything without hesitation. Some days are

bad and everything feels like I’m climbing

a mountain without any equipment.

‘Ah Epilepsy, you have fits right?’ –

Yes, but it’s so much more than that.

I have seizures – I fall to the fall and

convulse, or I stare blankly into space –

I am tired, I fall over, I forget things,

I get crippling headaches and light

sensitivity, I spend half my time in the

GP surgery or at the hospital,

I have days where

I feel low and I think ‘what’s the point?’,

some days I really struggle for no reason

other than ‘just because’ – and that’s okay.

Epilepsy is a part of me but it isn’t who I am.

Aside from everything I’ve just said,

I’m also a down to earth,

creative young woman just

starting out my life. I love country walks,

baking, hanging out with my friends and

trying to figure out what I want to do with

my future. I want a career. I want children someday. And just like so many other people I know, I want to be heard.

My goal is to get people talking. I’m not a doctor. I’m not a specialist and I don’t have all the answers – I’d be ignorant if I thought I did. I’m just a human being living with Epilepsy; something which is part of me but doesn’t define who I am or what I do.

I am not sick.

I will not give you my Epilepsy if you get too close.

What I will give you is my perspective. An insight into life with an invisible illness that I feel often gets forgotten and/or overlooked because (from my experience) people assume that they know and understand Epilepsy without asking what it’s like for me.

Ultimately, I am most interested in giving you a combination of the facts and how those facts translate into the chaos of the real world, because Epilepsy is far from ‘you have fits, right?’. Epilepsy is considered an invisible illness for a very obvious reason; it’s invisible. But, just because you can’t see something doesn’t mean it doesn’t exist or that we shouldn’t talk about it.

Let’s talk about it.

Let’s stop this ludicrous game of Chinese whispers with hushed voices behind cupped hands in a room full of noise. I’m here to interrupt the game. Make a racket. The kind where people stop to listen (I mean really listen).

I’m just a single person telling my story; but all the while you keep reading, I will keep writing.

Group member  Rebecca Jade

· Haywards Heath#

Had such a wonderful day yesterday!!!! May of been a tad windy and a bit of rain but didn't stop us having a lovely day at hickstead watching the show jumping & seeing all the lovely horses, thankfully a seizure free day to 🙏🏼

So thankyou

MY  STORY:Group member  VICKIE  

Julie Cooper 🎄Merry Christmas Michelle & Darren thank you for being there for me take care luv Julie xx

Julie Cooper Thank you so much Michelle 💜 😍for your kind words, we have celebrated our Grand daughter Lexi's 5th birthday. She shares it with her Auntie Hazel 😍she loves this. Her birthday cake had purple hearts on for Hazel. How sweet is that for a 5 year old? Take care luv Julie xx

Gina Rickard Thank you. Back you guys

Closed group member  You superstars. Posts like these are so helpful....have a splendid Christmas guys xxx

Michelle Shrieves And you group member  xx

Darren Shrieves Thank you group member for your kind comment , we try to be informative we all our post with the time we have to source them .

Closed group member  Well it's true- you do a fantastic job and I think it's fair to say that we all really appreciate it :)

Su Knight

· 29 December 2017 at 17:12

Hope you're all ok and having a peaceful break x thankyou for all that you do and for being there!

Closed group member

You really have. I've taken up your whole evening and will let you go to bed lol.
Speak soon
❤❤❤❤

Suzanne Barker Well it's true- you do a fantastic job and I think it's fair to say that we all really appreciate it

Julie Cooper

· 29 December 2017 at 12:36

Thank you for being there for us over Christmas. 💜Wonderful knowing you were there take care luv Julie xx

Closed group member

Thank you Michelle, I know you've just been through this, I really appreciate your help and support! I've had to wait to stop being quite so angry, as I know this won't help! Ok, so I'll write it all out then phone. I've taken on more work so I can help her through this bit,. And yes expecting to end up at appeal! Thank you again, will keep you posted, and hopefully won't have to pester you for advice! X

Closed group member

Was so lovely meeting with you all yesterday brooke enjoyed the cuddles, thank you for all the information you are doing a great job, there really isn't enough help and support for people with epilepsy a huge thank you for what you do  xx 

Closed group member

Thank you Michelle Think it's great to have a big support network down south! and look forward to getting involved. I'm currently based in Brighton so not to far. I think after having to leave my last job due to epilepsy, I'm more than happy and excited to get involved....

Closed group member

Thank you for adding me I was diagnosed 15years ago with Epilepsy when I was just a teenager. Still learning things about it. It's not a widely discussed subject amongst my family

Closed group member

Thanks... It's nice to be connecting with people who understand

Group member Tiffany Gunston Thank you for today!! You guys were brilliant!! Xx

Group member Suzanne Barker

It was great to meet you! I will wear my wristband-and use my mug during my tea break at work- with great pride

Closed group member
Thank you so much, in my experience it's a lonely world, epilepsy is still not understood, thankfully I don't have it but have cared for my mother since I was 6 & it's just awful for everyone involved

Closed group member.

It's a pleasure, love love love what you guys do and couldn't think of anyone better to support

Group member Katrin Vanhelsing You have to be strong. I have epilepsy too and now I live alone with a very intelligent cat, who knows when I need to relax before I do. My advice get a pet, they seem to know more about it then we do, and definitely more then my neighbours do or anyone who does not suffer with it

Closed group member

Our numbers keep growing! It shows how much it's needed.
Embarrassingly it was only a few weeks ago that I noticed the 'coincidence' of the initials...
Obviously my powers of observation have slipped somewhat!

Closed group member

I'm good and thanks again to you and all the other members for their advice with my question the other day.

2016   SUDEP Action Thanks for supporting #SUDEPAwarenessDay #UnitedAgainstSUDEP.

Closed group member

Thank u I live in brum have had epilepsy since I was 7 now 34 some time grand mall outhers petty mall I had a grand mall the outher week crosing the road and stoped the traffic lol I got to laugh about it or you will cry

Closed group member

Thank you for adding me.
I've been an epileptic for 43 years on medication for 37. I only found out about this group today, but how inspiring to be able to share some of our thoughts and problems

Group member Tariq Ahmad

This is horrible, I had the same experience on the way back from teneifer and wouldn't let me fly home I'm time for Xmas was asked to leave the plane was so embarrassing and when off the plane I had only me partner at the time to help me not fall and hurt myself the staff just chatting away miles infront of us. Was taken to a hotel which they said they had paid for but hadn't. I ended up having a full grand-mal seizure at reception due to it all getting to much and had to call my family back home to get them to pay for the accommodation. This one definitely goes down as one of the top worse seizures experience. So upset with easyjet will not fly with them again. Hope your ok love and your right they need more training. Xx

Closed group member
Thank you so much, in my experience it's a lonely world, epilepsy is still not understood, thankfully I don't have it but have cared for my mother since I was 6 & it's just awful for everyone involved

Closed group member

Hi Michelle. I know this sounds silly but is it normal to feel down with epilepsy. I had my first blackout in 6 weeks today but I don't think it's enough to warrant my dosage to increase. I will keep an eye on it. I have also been quite stressed recently as my brother is recovering from major surgery and also having lots of home improvements so am feeling that everything is getting to me atm. Also it gets me down not able to drive. I know this is essential and it's for a very good reason but sometimes I wish I could just jump into my car and drive off somewhere. Thankfully I have a very supportive husband who always listens to me but I don't want to keep burdening him (although he says I am never a burden). I was wondering if anybody else gets low or if it's just me being silly. Thank you for listening x

Ben Sab group member THANK YOU FOR BEING THERE FOR ME. IT WAS WONDERFUL TO HAVE SOME ONE TO SPEAK TO AND GAIN INFORMATION. THAT HAS BEEN A VERY BIG HELP TO ME.

Tamara Sington Group member

your group was recommended to me by our consultant i have to say i think you will be of help to us. i checked you website out and i thought it was great i like the story section, i will ask my son if he would like to add his story if that's ok.

Closed group member,

Definitely I felt very isolated and my friends didn't really understand, to be honest I'm so glad I found this group the E nurse put me in contact, best thing that's ever happened, I've had so much sensible advice and know that even if I just need a moan it's no problem no one will judge me x

Closed group member  Thank you Su Knight , yes It’s horrible! I don’t know what I would have done if I didn’t found this group it’s been allot of help. X best of wishes to you and your family

Heading 2

Closed group member

Hi Michelle. So sorry was not in touch earlier. Been very manic this week. Thank you so much for the lovely coffee morning last Saturday. It was lovely to meet you all and I learnt so much from you and now know that I am not the only one going through this. I took your advice as I had another turn yesterday morning. Could have been quite dangerous as I was sitting on end of my bed drying my hair with a hairdryer and next minute I was on the floor with hairdryer still in my hands switched on. Luckily It wasn't my straighteners. Anyway saw gp yesterday and he has increased my dosage to 500mg so hopefully will calm it down. Also my BP is high so I have to go back in 2 weeks to have that rechecked. I have also been referred by my manager at work for counselling with our occ health team to see if they can help with my anxiety so fingers crossed. All this is down to you so thank you very very much xxx

Closed group member

Im glad ive found it and everyone hear sounds so nice thats like a first in my life and i will ask anything appropriate that i can think of

Closed group member , Hi this is a great place to be, I've had loads of support. x

Closed group member ,

Thank you for letting me join you. Loved talking to Michelle a fountain of knowledge. How much did you make? X

Closed group member

We are very good at laughing about things , its very true if you don't laugh you'll cry .
I'm sure most people on here can tell you weird places they've had seizures, my daughter has had them from everywhere to on a bus, in McDonalds in the Drs ..
All we can do is say thank god you weren't squashed. :)

Su Knight Absolutely agree, it was a God send to me, when I needed help for ME after 10 years of trying to cope alone, where no one around me could help or totally understand. Michelle and others really helped me just by talking and listening. I'm so grateful for their support

Closed group member

Hello everybody. Thank you all for welcoming me into your group. I feel very privileged

 Group member Lynsey Hutchings

· 20 July at 10:17 · Seaford

Sending your E hero to school in tears as they don't feel well then spending the day with your phone waiting for a call. Epilepsy is 💩

Writing by Maggie Shearin

Hi I had epilepsy as a child (caused by a bang to my head) from the age of 3 till 7,and st the age of 55 I can still remember the feeling just before a fit, I always knew when I was going to have one, I used to say the funny feelings are coming,then I would wake up in hospital(I was always taken to hospital after a fit)after the age of 7 I was left with migraines and to this day still suffer badly with them, sorry that was a bit long winded lol x

Group member Suzanne Barker

· 15 July at 21:37 · Bexhill

Just wanted to mention an experience today at work which has deeply touched me. So we were out on weekend activities (I'm a care manager at a special needs school). It's nearly the end of term so we're all shattered (ooh trigger alert!) and I've got the old monthly misery ( another one!) and didn't sleep more than a couple of hours last night (and we have a hat-trick!). As it's the end of term, rather than taking a packed lunch we took the kids to lunch at a restaurant and I ...develop a blinding headache and am generally feeling rotten. Just a headache though, not the sort that in my case can precede a T/C, but unpleasant nonetheless.
As we're a "special school" the staff are very Epilepsy aware and I have never hidden my condition from my colleagues. Just as well as I've had my fair share of myoclonics, absences and one tonic clonic while at work.
One of my colleagues notices I'm not 100% and so I tell her that I need to go outside for a while. Bless her, she asked me if I "needed some company outside".
Nicest euphemism I have ever heard for "are you about to go belly up?" I have ever known

Closed group member  Thank you Mechelle.
I had a need. To complain about a friend of mine. Who has told me my Epilepsy degnosis is a sham. And that my medication is rediculous

Group member   Lorraine Godden

· 27 July at 20:30

Thank you everyone that's been asking about me I'm getting there I had a power port fitted I'm my chest fingers crossed not looking forward to having my stitches coming taking out when I feel better I will meet up for coffee

My  story 

Lynsey Hutchings

Group Member

 

Thinking about it I could possibly say that our epileptic adventure

started as early as 2009.
It became a bit of a joke that whenever something exciting was going

to happen (school trip, family gathering) Abbey would wake early with

a headache vomit and then go back to sleep, because she'd been ill

no trip, or she'd suffer during the family event with a bowl.
Reading up on this kind of thing now she could have been suffering

abdominal migraines?

Fast forward to 2013. I started to hear strange sounds in the middle of

the night like someone jumping on the bed. After the 2nd night of the

sounds I went in and found her having a grand mal.
I called the gp the following day and we got referred to EGH, as we all

know waiting for an appointment feels like forever.

We 1st saw a Dr in may 2013 we were asked to try and record a few

seizures before our next appointment. Well we did this very quickly

so I started calling to try and see him again. Eventually I got a cancellation

appointment and he agreed it wasn't right.

We went away in may and when we got home there was a copy of the report

that said  before he'd seen the videos he thought we may have been #

describing self gratification!!!!!!! I didn't know weather to laugh or cry.
Again I got on the phone and after 30 grand mals that I witnessed we were put on epilim and our Dr was changed.

Nocturnal juvenile myoclonic epilepsy is what we were diagnosed with.

Sometimes they were in bed but other times on the landing and even the bathroom.  We installed a stairgate and to begin with we bought her a little cat coller with a bell that she wore around her wrist so we could hear if she got up or was fitting.

In 2014 we changed to keppra,  this was another tough move as she had to slowly come off the epilepsy and build up the keppra. We did this during the summer holidays which was a good move as she spent the six wks stoned or asleep.

From the day we started on the medication the grand mals seem to be under control,  the occasional peti mal still happens but we have lots of tingles especially around her periods and we are throwing catamenial epilepsy in to the mix.

We've now started on clobazam to run along side the keppra during the special hormonal time.
The plan is to start it on day 26 of her cycle and finish 2 days after her period. We really haven't mastered this yet definitely a work in progress...................

Writing by Vickie Shrieves

I've had epliesy now for nearly 6 years i was diagnosed when i was 12 after many years of struggling with sezuires and being kicked out of multiple schools beacuse i was having too many sezuires, my fits are currently under control with the help of medicine and have been for nearly a year now. My parents took over a charity ( Epilepsy Sussex ) in order to educate people about epliesy and help people who have it, from people joining the group who h...ave Epliesy and for them to be able to meet other people who struggle with it, Parents or people who have loved ones who struggle with Epliesy, My parents and family have been the biggest support through this struggle, Purple day is a day where we support and celebrate people all over the world struggling or who have over come there Epliesy people's support and knowledge means so much more then people know. I have my Freinds family and loved ones to thank for all the support I've received. 💜💜💜 #epliesy #livingwithepliesy #support #purpleday

My story by Tamara

Group member

My son Adam was a normal healthy child , until he was involved

in a massive car accident he was out with his father who decided

that drinking and driving was fine.
Adam was left with massive head injuries I honestly believed I was

going to have to watch my 13 year old son die.
But he was a strong boy and pulled through. He re learnt to talk

and walk again.
The only lasting effect was that he was left with epilepsy. He had a

lot of big seizures to start with but slowly the consultants sorted these

out

with a mixture of meds.
We had 6 months of no seizures and moved to Sussex basically so

he didn't

have to have any contact with his father.
Out of the blue 8 months ago he had a huge tonic clonic seizure at

school they were back.
I was beside myself I'd left everything I knew to keep him happy the only

support I had was my mum and she really didn't understand.
The consultant gave us the information for  EpilepsySussex Group and my

mum found a youth group for kids with epilepsy.
The youth group was a no no , Adam wasn't interested and I heard some

bad things about it.
I needed information and support and I'm pleased to say that I've found that with 

EpilepsySussex Group. To be honest they are my life line.
We will deal with the epilepsy after all it could have been so much worse I still have my son.

Closed group member

Hello ☺ thanks for accepting me into the group. I'm still not completely confident about talking about my epilepsy but it's lovely to know there is people close by going though the same things (not that I'd wish that on anyone!lol) x

Group member Lynsey Hutchings Thank you so much I really appreciate u asking others x

Closed group member

Thank you! I'm liking this group already - feeling very welcome :) I've only been diagnosed recently so it's nice to know there is a local group! x

Closed group member ,

Hi all, I'd just like to say that after having a couple of chats with Michelle and joining the group I'm really impressed, it's made a big difference in my confidence so a big thank you.
And I'd like to wish everyone on here a wonderful Christmas x

Closed group member

Thankyou very much I have been in touch with his consultant and he wants his meds increased, he is going to review him after the Mri and then make a decision regarding the meds thanks for your advice x

Group member Tim harris.
thankyou everyone who has pledged money even though you don t know me !! thanks also to darren and michelle for their support even in the cold and rain and the coffee and lift home much appreciated xx

Closed group member

A great big shout out of THANKYOU!!!! for all the support and help you've given to me and my family. I wish I wasn't on the other side of the country, I'd like to give you a massive purple hug! You guys are amazing, I can't quite believe I found you. Three cheers for the most brilliant Eastbourne epilepsy group! 👌👍👏👏👏👏👏 xxx

 Closed  Group member  

· 16 July at 13:09

I'm blessed to have an awesome boss. He has been very patient and understanding when I am having Epilepsy related issues. I don't know how I get through the work week otherwise

Closed group member

Thankyou very much I have been in touch with his consultant and he wants his meds increased, he is going to review him after the Mri and then make a decision regarding the meds thanks for your advice x

Chloe Stanton GROUP MEMBER  Your amazing Michelle Shrieves thank you for sharing and helping support others. ♥ 😘 xx

Chloe Stanton GROUP MEMBER I'm so glad i have got to know u both and the group really is a blessing feels like a massive weight off when u know there is people going through similar things and can give advice.XXX

Closed group member I was 15 when I was diagnosed my Dad knocked on my door and asked me to take care of a couple chores when I was done with my homework. I get up to do it and he saw me drop to the floor full on convulsions. Based on written progress reports and report cards from teacher comments going back to grade school doctors believe I had it for years prior to diagnoses

Closed group member  I had no idea that I had it.
According to my Mother, I had it as a kid. At 47, 48. All types of seizures just out of the blue. Bamm. Thrashing violent ones silent ones. I would go void.....wake up somewhere else. Freightnig stuff.

Chloe Stanton·Group member:
  22 July2017 ·Epilepsy Sussex is such a wonderful group. Very happy I found you guys the support is amazing. Michelle Shrieves thanks so much for arranging the coffee morning it was so good to chat with people who truly get it and share stories and advice.

Group member Lynsey Hutchings Number 7. Epilepsy sussex are a great, amazing, fabulous charity who not only offer great advice but sometimes just listen. Also do good hugs

A story from a member

Hi both

Here is my story of how Epilepsy has affected me as a mother of a daughter diagnosed at 14 years of age.

I was dumbstruck when I received a call from my ex husband in Cyprus stating that my lovely daughter had had a seizure on her first visit to his new home abroad. She was in the local hospital, who wanted her to stay in overnight for monitoring, but understandably she did not want to stay in a foreign hospital on her own, so they discharged her. She was 14 and her 12 year old brother was sharing a room with her, so you can imagine the panic he experienced when this happened as they both got ready in the morning. The airline had lost her luggage so everyone put it down to the stress associated with that. That was 10 years ago now.

The next seizure she had was in the shower back at home with me, shortly after getting up. It was very upsetting for me to witness that for the first time. Why is this happening? Why her? I really wanted to take this away from her and was desperate to know what was going on, was this a temporary thing and what I could do to help? She received a cut under her eye, so that was the end to early morning showers. We developed a strategy to cope. Go slowly first thing, cup of tea and breakfast for first half hour, or if time allows stay in bed for a while after taking her tablets.

Jen was diagnosed at Hurstwood Park, Haywards Heath with myoclonic chronic epilepsy. The help at the Eastbourne DGH was minimal. Just assessing medication level really. Other seizures occurred which resulted in various injuries, such as 2 bad burns to her arm while using hair straighteners and a bad cut to her chin which needed stitches. Bad enough to have the seizures in the first place, but it's also the injuries sustained that is the major concern.
Still, we coped and Jen went to Winchester University at 18. However, she wasn't happy there and was having many seizures, so finally I packed her stuff up and brought her home. Very brave to give it a try but at least there was a hospital on site so she could take herself there. Somehow she always has the presence of mind to get dressed, pick up her keys and phone before she goes anywhere, which is fascinating.
Things levelled out and Jen went 2.5 years without a seizure, and had been learning to drive, until 31.12.15. So frustrating! Jen was so upset as she feels that her life was put on hold. She has had seizures since then and each time she feels its another month or so away from driving again. It has also affected her confidence to move out or find a boyfriend.
The new consultant at the hospital was useless so she complained to her GP, who referred her to Brighton. What a breath of fresh air Dr Aran is! An English woman for a start! And an epilepsy nurse called Nikki! What's one of those? At last we are getting somewhere. At the first appointment recently we found out Jen can get a free bus pass. Why did no one ever tell us that before? It's been 10 years!
I wrote out the last 8 seizure dates for our first appointment and worked out that they only happen once or month, but not every month, so I mentioned that I thought they were hormone related, so Jen is now keeping a seizure diary.
On Boxing Day 2016 Jen had a seizure at 7.45pm in the shower with no injuries thankfully, but that upset me so much I was crying. I haven't done that for years! This was so unfair! What was happening? I was confused. 10 years of knowing things were ok after the first 30 minutes of the day now changed to 'Jen could have one anywhere at any time now'. I was afraid to go out. I felt so low as I came to the realisation that I needed support for me. I looked for help, found Eastbourne Epilepsy Group on Facebook😊and went to the next meeting not long after. It was so good to talk to people who either have epilepsy or care for someone who does. They are such a lovely bunch of people and I learnt so much. Why is this information and support not made available? Thank goodness for these lovely people. They helped me to work out that Jen had taken some cold and flu tablets with decongestant and caffeine and that this can react with the medication. Knowing the time in her cycle it was probably a combination of the two, as I learnt that she will have a low seizure threshold at certain key times. Thank you so much Michelle and Darren! You have been such a help to me just knowing you for less than a month. I now feel much more relaxed and comfortable about the situation and feel that I have the strength, knowledge and support to deal with anything that comes my way. I felt so alone and helpless but now I have people who understand my situation and what I'm going through. Not only that I get practical advice to help us manage the condition. God bless you all being there x

Closed group member

On the morning of the 21st feb 2004 we lost my little sister to SUDEP. My brother found her fallen out of bed, she had had a seizure whilst asleep. She died in her sleep from sudden unexpected death from epilepsy. As a family we had never heard of SUDEP. Diane had only ever had 2 seizures and looking back now, maybe her change in lifestyle contributed to her death. There needs to be more awareness of SUDEP, 42% could be saved with awareness. I fundraise for the charity SUDEP Action and am always raising awareness to help inform others of the risks wherever I can. I have a great network of support from other bereaved families on Facebook and my ‘purple family’ have helped me through some grief stricken periods. I would be honoured to work with Epilepsy Sussex and help raise more awareness of Sudep. If any one would like more information please contact Sudep Action

3VA - Voluntary Action in Eastbourne, Lewes and Wealden shared your post.

· 23 October at 08:32 ·

Thanks to Epilepsy Sussex for helping us all learn more about Sudden Unexpected Death in Epilepsy (SUDEP) on SUDEP Awareness Day, which takes place today

         Embroiderme

· 10 June ·

Loved doing these caps for Epilepsy Sussex - check out their page to find out all things epilepsy related, including upcoming events in and around Sussex!

A great  day out at Harbour park

by the Hart family 

                              By Lynsey Hutchings  Group member 

 

4 years ago today (25/07/17) we were told what we already had guessed,

that we have an epilepsy warrior.

1461 days later she is still fighting

daily and tries so hard not to let it get to her or stop her from doing anything.
We are so proud of you, keep on doing what u are doing we are all

behind u abs

UPDATED Sep 2019

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