Hello u wonderful people

Coming up two years since my son was punched and nearly died from a split artery in his neck...I thank the angels he survived...he has brain damage and now classed as disabled... To everyone he seems normal cos he looks it but far from it..when he left hospital we were discharged with no support at all....I have had to fight for help, benefits and support....dont really know why im posting this.....just want people to understand that my boy might say bad things..he doesn't mean it, he has lost his filter...I wish people wo

ould understand but life seems so shallow..... Brain injury awareness is shit....sooooo many people are suffering and need global awareness xxx

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  • People are pants. I'm 6 years on and I still say the worse things ever, insulting , upsetting and being harsh with others. I spend most of my time alone, well with my dog, I try not to speak to people incase I say the wrong thing or in the wrong tone. When I think back to just 2 years after the crash I know I was horrid, really horrid but I didn't know then.

    He was just in his teens wasn't he if I remember right, I don't really remember so that was a weird thing to say.

    Did you know you can get a brain injury card now, it's by headway and the police. It names 4 things on the front that are worse for him. Mine says mobility and speech ect for the first 3 then at number 4 it says "I can be aggressive " in my family we all joke about it, me aggressive never 😂 . Maybe you can look into that so if people are nasty, offended or judgemental you can show it too them. I swear by mine

    Love to you both, it sounds like your doing well x

  • Couldn't agree more Sambo ; life is pretty challenging for most of us, and pretty crap for some.

    I seem to have settled for a second-rate life now, after 5 years, 'cause any available aftercare never actually amounts to much.

    But it is what it is, and I try to remember all those scientists and researchers working day-in-day-out, looking for new ways to improve quality of life for people like us, and others with chronic conditions.

    .............and I'm still grateful to be alive !

    Love & best wishes to you and your son. Cat xx

  • Hi and welcome back

    Sadly a lot of us (me included) are like your son, not only do we lack the sensitivity in what we are saying but also the control to stop once we have made our point. Sometimes the worst thing can be it can be instantaneous, just like some one has flicked a switch and off we go.....

    The life after a BI is hard for both the injured and family, sadly nothing much seems to be changing in terms of support and rehab and as Cat says above it is just a matter of settling for what you have.

    All the best

  • Hi Sambo, Yes people are so very shallow! It's a sad world out there. I agree entirely there is such a lack of understanding about bi and that's what makes it so upsetting and so much harder for those of us who have been inflicted with this horrible problem!

    How nice it would be to be totally heard, for others to realise that just because we look the same does not mean we are back to our old self, if only they could be educated to see how fatigued we are, how weird the inside of our head feels, how we have no control over our feelings sometimes, how we can struggle to find words and then be a chatterbox the next minute! I'm sure plenty people say...oh they were fine when I saw them yesterday, they can so manage etc etc!

    The hard fact is...until it is brought to light by professionals then we will never be heard, nor understood and that can be by our family and friends too, which then makes it even more sad and hard to deal with to the extent that we prefer being home alone rather than upset ourselves by not being understood or feeling like we aren't quite in the company even when we are sat at the same table!

    Be proud of yourself for supporting your son and being one of those who do understand our predicament, your type are few and far between believe me! I do feel for you, it can't be easy seeing others looking on not understanding why your son is saying what he is, I think I'd actually find that more difficult as it's instinct to defend your own child no matter their age!

    The medical profession need to be commended for the work they do to save us, that's for sure, however there is a huge gap when it comes to after care and to raising awareness of bi, probably down to a lack of funding I imagine but yes I agree it's def pants!

    Take care and best wishes to your son.

    xx

    x

  • Hi

    I totally understand how that feels. I'm afraid I'm also 'out there' dressed in normal clothes and mixing with people, waiting to engage with the next unsuspecting person to challenge me, and then be surprised by my response. I have a tendency to be very convincing that I right in some circumstances, leaving people scratching their heads and thinking they've made a mistake.......this is very upsetting later when on they way home I realise it's my mistake. I'm embraarased to go back to some shops. I mean that in a good way....they've been more than helpful.

    As for telling the truth in all situations . Yes, it's not a popular way to win friends - I'm afraid my family has still not gotten used to that. It's especially unpopular the less frequent ti becomes. The more you recover, get this almost under control, and then let an unfortunate remark slip out, the more surprised and annoyed they are. This is all because of looking normal. People just forget there's anything the matter. I hope that as time goes on your son improves. I've had help from a neuropsychologist. You can ask your GP to refer him for this.....they can help find ways to redirect your unusual behaviours. It's worth pursuing. If it's possible to get help for him now it will help him for the rest of his life. Don't give up.....it's too easy for health authorities with stretched budgets to leave care to parents that should be being provided by professionals. Go back to the doctors and tell them what kind of support he needs with his various problems. Good luck.

  • Yes, do get him the card from Headway. We had a bad experience recently and my husband can show his card (when he remembers he has it) that explain that he doesn't necessarily understand what is happening. It is free - make sure he has it somewhere prominent.

  • Sorry to hear this - you make a good point that an awareness campaign is needed! Perhaps a badge?

    My saying what I think and swearing etc has been a problem but now it is just me, my husband and my 'young people' it is OK - 'Mum is just weird but it is OK to swear in her presence'! Actually it does being me closer to the YPs that I have few 'grown-up' hangups (no racism or sexism mind!).

  • Cal says things then says ' I shouldn't have said that should I?' So he is realising what he has said is inappropriate. I sent off for a headway card for him, and it is really good. It would be better if he would use it though. He is reluctant to use it because he wants to 'be normal' again, doesn't want to be different. In time I hope that he will get used to showing it. Thank you all for your support, it means so much. x

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