Other than this community and health unlocked platform, does anyone attend any support groups, charity organisations or meeting?
I recently found a great group called Silver Lining they are an organisation for people affected with Brain injuries. I attend the art group each Thursday and a walking group each month.
Well if they had telephone support groups that would make life a bit easier for me like I do with OCD Action for people who are too scared to go out or havent been out in years like myself because of my severe OCD, and other people who can't get out for various reasons. But they don't exist with the Encephalitis Society which means I can't attend eveents unfortunately. but obviously I would have loved to, otherwise.
I haven't officially being disgnosed with a brain injury but the Encephalitis Society suspect I have an A.B.I but no-one else ever mentioned it so I was quite surprised and a bit shocked when the ES mentioned it. Have you officially been diagnosed with an A.B.I ?
However I will have a look online for Silver Lining.
I have not had an official diagnosis but from talking to other member, encephalitis society staff and further reading. I would suspect the I have a ABI just from some of the after affects of Encephalitis.
Well, if they had have had telephone support groups that would make life a bit easier for me, like I do with OCD Action for people who are too scared to go out like myself or people who cant get out for other various reasons but I know that this doesnt exist with the Encephalitis Society which means unfortunately I can't attend any meetings events or support groups . When they first started out in the 90's I went to some with my parents when Elaine was there and was in the process of getting my epilepsy under control which started when I was 1 year old and was forever in and out of hospital every time I picked something up set my seizures off etc and was akways on a drip . They changed my medication when I was 10 and by the time I was 18 they stopped. This was the time the ES first came out but when I was there I saw mostly disabled people and any leaflets they had only would benefit those people . I have never been classed as or registered as disabled or even had a diagnosis of an A.B.I have you? All the other problems I had were mostly cognitive and emotional if anything so I suffered silently with paranoia depression anxiety and the ability to absorb information quickly as in a TV storyline this got misunderstood and/or misinterpreted for having a lack of understanding which made me so infuriated nobody could understand me somehow. Many years ago I used to say or do uncharacteristic things but am much improved on that now. Its just that i dont make sense when I talk , or dont stick to the topic, or can't keep up in conversation if they are going too fast this causes panic attacks. I always hated people listening to my voice, incase they didnt like it so I always avoided talking and have been a very passive person and often people used to say I was acting dumb or was ignorant. I have come out a bit better now, yet if I ring up anyone who I dont know or stranger I will change my voice to a phone voice coz it sounds better to others I fear . I'm hopeless at expressing myself and talking anyway.🤐 I have had my OCD this bad since 1994 when my seizures stopped. Lets hear a bit about you?
I go to a monthly event at my local Headway. Search that . There's branches all around the country that do different events...
Good luck.
I attend OCD Action Skype/Phone support groups every other Tuesday and Thursday evenings and the odd week there is two evening groups in a week but thats only once a month. ocdaction.org.uk I have used their helpline and email help . I have been doing that for years now and I find them extremely helpful!! In the past I have used several different communities on here like OCD community, Anxiety and Depression community and it did help a bit and at the time sometimes my OCD was being triggered off so in the end I stopped it.
Yes absolutely!! 😊
