Newbie

Hi there, I've just noticed this site. I acquired a BI back in 2000, at age 12 and I've forever looking for support/understanding of what it does to us! I don't have any physical symptoms, so it's is purely just a 'hidden disability', but I greatly struggle with socialising and even family and my now husband have no idea. Would be great to chat to someone in a similar position! :-)

21 Replies

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  • Welcome in, there are loads of really helpful members on this forum, we're all at different stages of this 'adaptation' process, and there's loads of really useful advice and guidance on here.

    There are plenty of "Oh, I thought that was just me!" threads about all manner of strange stuff. Strange to 'outsiders' who don't have a BI... which you're not any more, this community is incredibly supportive, and, when you've had a search though to find any 'questions' you might have, you'll see that everyone here is really sympathetic.

    We're not angels, and I don't think any of us claim to be perfect, most of us are just working with what we have, as a way to not stagnate in the 'poor me' corner. Socialising is a big one, and there will be lots of previous threads dealing with how much more difficult it is for a person with a BI, for a multitude of reasons.

    Jump in, ask questions, have a browse through threads of interest, there's usually someone 'about', due to some of us having altered sleeping habits.

  • Hahaha we're definitely not perfect! Thank you for your reply - I'm already looking forward to utilising this network and hopefully helping supporting myself by being here! Katy :-)

  • I'm not as open as BaronC in terms of Facebook, I have a wide range of work-people on there, and I don't think they'd 'get' me throwing a tantrum because my t-shirt 'smells of nettles'. I admit that I cage myself a bit on other social media, to avoid well-meaning 'friends' turning up with cake, or men in white coats.

    This forum is different, because, when I wake up at 2am, wondering which bus I'd have to catch, to get to somewhere I'm not actually going, I can talk through some of my weird-irrational thoughts.

  • That's quite refreshing in itself - I suppose with having mine at a young age and growing up with it I've had no choice but to be open and try and form a life/friendships despite it, but yes there is that other side that I don't share, can't share - not even with my husband - why I wake at night and how much I want to just chat and be told it's ok and put my thoughts to rest I'd instead get extreme annoyance at waking him up for something so ridiculous a thought! I go to CBT regularly however I'm not sure it helps - perhaps this will start helping me to deal/overcome and not panic as much in the moment knowing I have folk I can chat too Katy :-)

  • Hello and welcome, good to see you here! You are far from alone, trust me, settle in and make yourself at home. Everybody here knows precisely how you feel, we've all been there, I promise you

    By the way, if you're on Facebook, have a look at 'Notes From The Brain Damaged Baron (that would be me) to show we know how you feel

    Baron/Andy

  • Thank you, just found it. It's very refreshing to think there are a lot out there without physical/obvious symptoms! Just shocking how long it's taken me to click there must be support out there! Thanks again for the swift reply, Katy :-)

  • Hi Katy. There's plenty of support if you know where to look. Sadly, few people bother to tell you at the outset do they? Most of us were let 'hanging' and allowed to find our own path. It aint easy. Keep fighting, keep smiling

    Andy

  • Always try my best! It's all we can do eh?! But it never feels good enough, I do have two wee boys now so that helps with the focus! I suppose with every BI being so different, and no one understands so they avoid it! Thanks again, Katy :-)

  • Yes, I join the others in welcoming you aboard. Brain injury is very much an invisible disability and, because we look pretty much ok and seem to be `better` and `it was a long time ago` does not mean life is easy and the changes, some very subtle, may not be understood by anyone who has not had a BI. You will find this a supportive site, there is scant emotional help out there for us so it is down to BI ers to help each other.

  • Yes, I've always been on the lookout but it's not really been first and foremost- until my husband was diagnosed with PTSD (he's an veteran.) it seemed the world got bombarded all of a sudden with support for PTSD (although only vets...) and BI is still a taboo subject with limited support... thank you for your reply, Katy :-)

  • Hi Katy,

    Welcome to the forum. Lots of people here will understand or be able to relate your thoughts however irrational you might think they are. You can always call the Headway Helpline (free) for advice, or just a chat about what's happening with your recovery. By the very nature of the injury,mint can take a long time to realise things :) I certainly did. I'm only just starting to see how things are now and get used it, so you've done really well to get this far without the right support. I also was sent for CBT which was just the most appalling experience, and just caused more trauma. Look forward to reading your posts when you want to drop in :) and good luck with your continued recovery.

  • Hi ya newbie. Glad you found us, we nose well most of time lol. 😜 I think all of us know this social ing thing. I know I do. I have no husband , no family near and one friend. If I don't see her I spend all time on my own and like it. We are here to help we're we can or just chat if you want xx

  • Ohhhh just read that back Katy and prodictive text got me a few times. I don't have my glasses on so can't really see but Iv just sprays false tan on my face. See we are just normal people with a difference. If you read through my posts you can see I generally cope well but do have my meltdown moments. I think we all have them but be honest on here and the loving support you get is fantastic xx

  • Hi Katy............good to meet you !

    My life has changed dramatically since my brain haemorrhage in Dec 2011 and, from being socially very active, I now prefer to be alone or in the company of quiet, calm people. :o

    And that seems to be a theme amongst many others here. So it's therapeutic talking to like minded friends who make no demands and can identify with many, if not all, of our issues.

    Hope to see much more of you m'dear. ;-) Cat xx

  • PS we do have some 'silly' moments from time to time too ; watch this space ! :D x

  • Thanks to you both, the support and messages I've got so far since joining only last night is almost over whelming! Really looking forward to chatting Katy xx

  • Hi Katy and welcome.

    It's amazing the support and guidance we get from each other here.

    You might download the Headway leaflets to help the family understand.

    Welcome and look forward to chatting.

    Love n hugs

    Xoxo

  • Thank you :-)

  • Hi and welcome to you,iam the wife of an A.B.I survuior.IT'S hard all round but you can get through,and keep healing

  • Thanks, nice to hear your on here too xx

  • Pleasure

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