When I joined the Encephalitis Society in 2019 it was the personal accounts of members, carers and survivors that really helped me.
Has anyone else found these recourse useful? If so in what way?
I could relate to parts of the stories, it made me feel less alone and reminded me it was/is ok to have some struggles or low points.
Has anyone submitted their story or been part of a My Brain and Me video?
I have found that been more open about my experience has helped and writting has aloud me to get feeling or emotions. Out of my head in a way that is safe and free from judgment.
Written by
RED1224
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Well I did submit my story a while ago it must have been about six weeks ago I think . But it looks as though it has got lost and I will probably have to try again. 😑
However I will have to have another look at the stories in my own time and will let you know I promise.
With regards to partticipating in 'My Brain and Me...
Well first of all I am housebound with my OCD, secondly having to travel all the way from The Wirral 'across the Mersey' from Liverpool to London would be far too traumatic for me but maybe next year eith a bit of luck?
Finally meeting a crowd of strangers they wouldn't get a peep out of me with my paranoia either..
Thank you so much for sharing your story with us Paula-38! It can take up to a few weeks to process member's stories, but you are welcome to send it in again as well
I have just sent my Lifelong Encephalitis Story in again yesterday It took me a whole day and a half it was really hard work and ever so emotional , so I did it in two parts.
Well I did submit my story a while ago now maybe over six weeks ago I think..
But it looks as though it must have got lost and I will probably have to try again. 😑
However, I will have to have another look at the stories in my own time and I will let you know I promise.
With regards to participating in 'My Brain and Me'...
Well first of all I am housebound with my OCD, secondly having to travel all the way from The Wirral 'across the Mersey from Liverpool' to London would be far too traumatic for me, but maybe next year with a bit of luck?
Thank you for sharing, RED1224, it is so helpful to know what is useful! Anyone who is interested can find our written members stories here on our website: encephalitis.info/Pages/Cat..., and a playlist of video member stories here on YouTube: youtube.com/playlist?list=P...
Well... It was difficult to try to find ine that I 'could' relate to really but just 'little bits' of Alison's story, Chelsea's Story, Dawn's story and I CAN certainly relate to most of Paul's Story... but not all. Because I had it as a one year old and unknowingly at the time, I must have had it ALL my life which makes a huge differnce, so I can't really say it has changed MY life at all... but I do sympathize a lot!! AND until the last month I have never really thought of myself as an e survivor really because it has been normality to me. How weird does that sound..? Some of the stories are very sad cases and I feel so sorry for them.
I can't really relate to life "Pre Encephalitis", experiences "during getting diagnosis being in hospital any symptoms acute phrase of the disease" etc. that side of things if that makes sense to anyone here.?
I wasn't even told about it until 9 years Post diagnosis by my parents but after that nobody mentioned it again. Because I honestly don't know and unfortunately wouldn't be able to answer any questions referring to that , which "maybe somebody else maybe able to better than me". 🤐 sorry about that.
But as long as people imagine what it might be like if they had have LIVED WITH IT ALL/MOST OF THEIR LIFE and that IT NEVER CHANGED THEIR LIFE AT ALL so I suppose would be a tricky one to relate to and/or understand.
I sometimes do imagine what it must have been like for others who had a good start in life and either as a teenager or adult then being struck down by a disease called encephalitis and that some are very sad cases and others are left with various disabilities whereas I wasn't refereed to or registered as disabled what-so-ever. But I DO totallyunderstand that it must have been a nightmare for those people and their families!!! I do sympathize a lot though!!!
I would say I was pretty similar to that of the average person with a couple of differences but there again everyone is different in general anyway. be a tricky one to relate to and/or understand I suppose, because as far as I am aware, I don't think there are many who could.
I know that I haven't been in that position that most have... where they 'usually can relate to one another" about Pre Encephalitis, shared experiences of during the acute phrase of the disease and Post Encephalitis...
But "I certainly DO understand how it can change some people's lives and they DID have a good life prior to diagnosis and then suddenly have to find ways to adapt to their new life and then they don' t always have the skills to fight back.😊 Apparently I lost ALL my Cognitive skills, although it took me a good 30 years to regain them again. However during that period of time, I knew that I had to be patient with myself which I was, and thought well..
" It will come when it's ready". I also thought "NOTHING IN THE WORLD WAS GOING TO STOP ME FROM DOING THE THINGS I ENJOYED DOING" I WOULDN'T HAVE HAD THAT... NO CHANCE!!!! and you know what? It didn't "even though I had to be supervised at all times incase I were to have seizures" inbetween hospital admissions and coming home and had to stay at home for a while before I could carry on as "normal" again. This was because my resistance was low and the chances of picking something else up otherwise I "would have been back to square one" like in the very early days but as the years went on this became less and less, therefore I started having longer breaks before it happened again then several more years went by then I had my last one. I was well aware of this BUT I WAS EVER SO DETERMINED to carry on as "normal". This is why I couldn't be a nurse which is what I would have liked to have done but also my paranoia WAS.that bad I wouldn't talk to a soul bar my parents so that too didn't help so I went on to C.L.A.I.T and earning all the certificates for that (incl C.L.A.I.T Office) and I enjoyed that since I left School.
However I am still helping people out in a different way thats all " which I quite like doing " and it gives me something to get up for now as well as giving me extra motivation to help me to fight my OCD, and gives me a break from ruminating over my OCD, so it's like a 'form of therapy really i.e it gives me a structure to my day, even though I am "part time" I am doing something productive and constructive"if that makes sense. Because OCD Action recommends and so did Springfield. The last time I ventured anywhere was 8 years ago now.
I WAStoo scared to initiate a conversation incase they might not like my "horrible voice' and for some apparent reason I thought that well if I didn't like it then I anticipate that others wouldn't neither which I know was stupidity, so I tried to better it and avoided talking at all I have always been like that but now I do talk; although "if I'm talking to a "complete stranger" I always try and change it to a phone voice which makes it sound better because it sounds like listening to a child talking which is embarrassing "I have been like that since I first started talking always hated people saying they recognized MY voice" that made me "ever so anxious with paranoid thoughts" thrown in , and I am STILL absolutely hopeless at starting a conversation off because I struggle with' not knowing how to "start it off" because this is where I "get stuck" then there maybe a delay before I talk again, as well as "how to put it across", so I would find it better if the person I am talking to could iniate the conversation epecially "strangers and casual acquaintances" if they don't mind.
But ..Yes I CAN certainly relate to your after effects though which DOES help.
What is C.L.AI.T? Sounds like an important part of your life when you went on to C.L.A.I.T and earning all the certificates for that (incl C.L.A.I.T Office) and you enjoyed since leaving School.
What skills did you learn? I have to admit become more interested in IT skills recently. Preferring to be outside as being in from of a screen would give me a headache.
Well if being in front of a screen gives you a headache. I am just in the middle of a compulsion at the moment but will certainly come back to you later though.
Sorry about the delay in replying. I learnt what a spreadsheet is and how to use one, databases, word processing, typing skills, memos, different icons on the computer some are easier than others for beginners but after some time you learn the others, the toolbar, cut and paste, copy etc and save it to a filename.
How to use photocopier and printer and practically evrything about how to use a computer and how it works random accecss memory, 'RAM' computing processing unit 'CPU' emails, floppy discs and CD Roms etc plus much more. You can always ask at your local College if you could do a part time C.L.A.I .T course i.e say 2 hours twice a week or 3 hours once a week is all I can suggest really. But you would have to enrol "early on" in August in order to get a place for it . I will leave it open for you. 😊
Sounds good IT skills are essential for these day and age with more and more been done on a computer. Have you been able to put your skills into action since doing the course?
Well I have done in the past at College even though I did drop out a lot due to relapses with my OCD and I used to have a PC but ita that many years old it needs a technician to look at it , so now I have only got a tablet because nobody is allowed in apart fro.m my dad and that I have been in for 8 years unless its something thats inpossible to avoid.
So in the near future when things are running as normal shops etc my dad says he will treat me to a laptop and printer . I also was about to do an English GCSE exam twice and the first time it was bexause I started getting panic attacks and then I was struck down with OCD so I had to leave before that. The tutor said that I coud have got a B grade if I had have stayed.
Then the second time in 2012 , I needed extra time for the exam and the College wouldn't give me any for OCD, they didn't even know I was epileptic because I had been free for a long time.
In fact the only ones who knew were my parents, the neurologists, and GP.
It was a pleasure meeting you today, I am now reflecting on that information. I "really DO appreciate your peer support" thanks for that!!! It's starting to kick in a bit now.
I have someone I can relate to now for the first time . 😊
Massively talking to other members and people who understand has been such a game changer for me. Family and friends can try to empathise or sympathise but it is not the same as getting feedback or advise from someone who has lived through encephalitis.
It was nice to meet you and I am glad you are getting something from it. This form of support is great because you can reflect and take as much from the experience as you want.
Awh thank you SO much RED1224, I really DO appreciate every bit of it!! 😊
I find you more understanding than I anticipated and knowing that as well as someone I can relate to for the first time is marvellous!!! It has "made my day"!! 😊
I really did enjoy our meeting today! Sharing encrphalitis experiences something I had not done before plus loads of really interesting information with regards to what the Encephalitis Society do, and "new things coming out all the time"! This has made a huge difference to my life knowimg that I am no longer alone.
I am so pleased that we are getting along quite well as "casual friends". 😊
I think that the more "casual friends" we have the better it is all round.
I think that OCD Action would be able to help you keep your Social Phobia under control and how to prevent any relapses.
I am in the process of trying to share my story on the website, but the trouble I am having is that I can't draft it and return to it later because it keeps going off on me and I have so much to say, so it has been making me drained because I kerp trying to persevere but had no success as yet. I don't know where to start. I wulx appreciate any suggestioms folks.
I cannot readily express how much they have meant to me. I suffered mania in 2015 for the first time in my life that lasted months. No physical checks were run on me at all I was just put straight into the mental health system.
after the mania the lights switched off and I dissapeared. I was unable to speak a whole sentence or construct a thought for over 2 years and I have virtually no memory from Ocober 2015 to Early 2018.
it took me another 4 years to recover. For 4.5 years I didnt know if I was the same person (the same beliefs, likes, reasoning, reactions). In the next 2 years I recovered fully (with some blind spots). However so many early symptoms I had and the overriding cloud I dealt with after, no one could or tried to explain and the mental health teams never engaged medical physical health doctors or specialists.
I wrote a book which was a cathartic exorcism for me. I truly believe it allowed me to give a voice and a life to what had happened, which relieved me greatly and was the first time my family and friends knew what happened as I knew it , However I didnt know what it was and have wandered in the dark on that for a year until I came across encephalitis, brain on fire, then the forums, Finally everywhere I look I see things I recognise and can associate with. It has lifted such a weight I had. It has been one of the highlights of my last seven years.
to give context after 7 years I was finally able to fully engage with my daughter and discuss life, the universe and everything after 7 years of not being able to properly express myself. Finding this group is up there on one hand with that
Thank you for existing. Thank you for being so welcome.
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