Best experience of being part of the encephalitis society community?

[RED1224]

Has anyone got a best experience/s, interaction or memory?

For me it was attending my first event with my wife.

Meeting other members and staff

Having a friendship and support group now of members I have met though different events.

[Paula-38]

Well ... when the Encephalitis Sosiety first came out back in 1994 when my seizures stopped altogether and later that year was diagnosed with Profound OCD my dad saw an advertisement in the local newspaper from Elaine Dowell, asking for any Carers of children who had the disease, and he signed up and then I went to some support groups with my parents because we hadn't heard of encephalitis before..

It did raise awareness but they were mainly disabled people physically and/or intellectually whereas I was suffering in silence from what I now know is paranoia as I was always a very quiet person and was too scared to iniate a converstion at all, people had to initiate the conversation so I reluctantly replied in a very low voice or write it down etc.

I didn't want anyone to know for fear of being embarrassed and paranoid wspecially going into the unknown... also my experiences with people .

I think it might have been late 2018 when I started doing some research into what causes OCD and was curious if encephalitis was a caus...... My dad contacted the Encephalitis Society again to see if there was a link between encephalits and OCD because all the OCD experts don't evrn know what actually causes OCD. My dad started the ball rolling again, then they wanted to speak to me but at the time I found this really embarrassing and was very paranoid . Given plenty of time I gradually started to open up 'bit by bit'. I then started to get aquainted with them and now a year and a half later they my full life story and my lifelong journey with Encephalitis and putting a name to it was such a relief. I found that they were thr best listener I have ever come across and they understand me which I have never had that before. 😊 This staff member now knows me well which is something new for me!

I don't know any other staff but I am just starting to get aquainted with them because they are strangers to me and I'm hopeless with strangers.

I just wish I had have known all this back in the 1980's

I think maybe the

E.S and OCD Action medical advisers etc to try to find the root cause because nobody knows what causes OCD even the experts in the field have never got down to that as yet.

Since January this year, I have been supporting the Society in every possible way I could from home anthe Connection Scheme and I was given 4 contacts and via that I made a new friend and some new aquaintances, and of course you are another new friend I've made. I have only been a volunteer for about the last month now and in that short space of time it has increased my motivation a lot and it's a good distraction which helps me to spend less time ruminating about my OCD whereas before I wasn't even getting a break from it... It's quite therapeutic for me, keeps me busy, I enjoy my role helping out to raise awareness and inform families of children with encephalitis because there has never been enough resources out for them . I don't want them growing up from an early age not knowing what is wrong with them like I did.

[RED1224 in reply to Paula-38]

I am glad the volunteering has given you something to look forward to and it is rewarding helping others.

The connection scheme sounds like a success for you with a few friends coming from it. This is how I have felt when contacting and maintaining communication with someone who has an understanding of Encephalitis.

[Paula-38 in reply to RED1224]

Well, I feel I have made a new friend on the Connection Scheme and another one on this forum.. which is you.🤗 The others are new aquaintances at the moment.

[Paula-38]

I really do "appreciate everything that The Encephalitis Society does"!! AFTER WELL... OVER FORTY YEARS I am finally getting a bit of help from them which I APPRECIATE VERY MUCH!!!! 😊But who would REALLY BELIEVE ALL THAT AFTER ALL THIS TIME doesn't make sense does it?

I would have thought this is usually the way,WITHIN THE FIRST DECADE AFTER DIAGNOSIS... BUT .. NO!! I NOW know that if I "had have been" getting it back then which in my opinion "could have gone a long way" but no mention of it ever again. It's so weird.

[spicekin]

Meeting others who have been through it I feel. Jonathan

[RED1224 in reply to spicekin]

Hi Spicekin I agree that meeting other who have been through similar experiances, getting peer support and meeting members at different events is so beneficial.

[Paula-38 in reply to spicekin]

Years ago I always felt very intimitated because at the time I had NOTHING in common with any of the people I saw at meetings back in the early 90's, when the Encephalitis Society first came out. The people I met were very poorly, and had various disabilities which certainly is understandable for the majority of people with Encephalitis. But there WAS not much talk of people who have/had just a few problems thereafter, and where they didn't interfere with their lives that much.

However this year after becoming a volunteer and meeting "someone I can relate to for the first time" is absolutely amazing really ! I never thought I would have had that opportunity to be honest. But it'd because the Encephalitis Society are bringing new things out all the time now and I appreciatr that.

[Jensibel]

I've attended several events put on Encephalitis Society. My favourite was the Thames boat cruise - the famous patron Martin Kemp (as in Spandau Ballet, Krays, EastEnders) was on board. Thinks it was his welcoming party. I swooned a few times - still got a crush on him now 😂😂.

Of course, meeting the team and other survivors on board was also great!!