Life after brain injury?

Hi Everyone,

I had a 'moderate' brain injury in 2014 at work and life has been a bit of an uphill struggle since and have just joined this site. It would be nice to chat with anyone who has had similar.

I am still not back to any form of work (much to my disappointment) and am receiving treatment from a variety of specialists, but the hardest thing to explain to others and sort out is the way in which I feel my brain and cognitive functioning has changed. I have had all of the formal tests, which only just confirm what I already know. I know that my accident could have had far more serious implications, but to me my whole world has changed and I am not sure how to get it back!

14 Replies

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  • Hi, and welcome.

    Acceptance, it's the hardest word. Any brain injury, severe or moderate has an effect on the person unfortunate enough to suffer the injury. You have changed, you are a new version of you and the trick is to learn to adapt and accept that part of you. It can take days, weeks, months, it may never happen. But, and it's a big but, you must try to accept that the old 'you' has gone and the new version will take you through the rest of your life.

    Talk to anyone who will listen, anyone here for example. Chat to Headway, give them a call. We'e all here for you. Many of us are decades into 'recovery' myself included and we're always here to help.

    Oh, and laughter is the best medicine :)

    Best wishes,

    Baron/Andy

  • Thank you SO much for the very uplifting comments. I will definitely start talking more to others about how I am 'really' feeling. I suppose I just thought I would be able to 'get back on that bus' again, as I really miss what I used to do - running schools in challenging circumstances. Yes, I was a dreaded Headteacher in my past life, but hopefully an unusual one as I was expelled from my own secondary school a long time ago - a bit rebellious!

    You are right, the old me has gone which feels a bit sad at the moment. However, the new one might be a bit more interesting and the skills that I thought I had must be in there somewhere - I hope!

    Many many thanks

  • it's still fairly early days, as Barron has said acceptance is the key, that it is a V2 of you now.

    But V2 i'm sure can have fun! and it is still early days I'm just before you? mine was december 13.

    And I still notice improvments

  • Hi there and welcome !

    Life after BI can be so challenging - particularly the bit about explaining to others how you really feel ( I sometimes don't even know myself - let alone how to express it to other people - colleagues/health professionals and friends/family) .

    I had a CVST last October - coming up for that " dreaded" anniversary - but hopefully will get the " all clear" medically in November. But it definitely changed me - as a person- in all sorts of ways . Having had time to analyse it a little from a bit of a distance sometimes - I'd like to think it might even be " a new, improved recipe me" .... Never know !!

    It does take time and we all have to go at our own pace - but be reassured that you will find a lot of folks here who understand - often without you having to write it all down ! - and who may suggest things to help - or just listen and empathise .

    I'm working almost full time now and feel like I have most of the function back that I had - just have to explain why I get tired sometimes - not overdo things and planning rest times . Just more dealing with emotional stuff and the fact that my partner of many years left after just kissing me goodbye at a &E and never to be seen again.

    Anyway , hope you are finding some comments on here useful - Onwards !!

    K x

  • I left my former life behind in feb04. I'm getting to quite like my new one!

    I used to be an air traffic controller, now I work part time in a primary school supporting children with additional needs. I love my new job, not only because I thought I'd never work again, but because I genuinely love the smiles and stories and fun I have with the children.

    There are times when I can't workout how I managed to do so much prior to BI.

    I get frustrated and annoyed and angry and tearful still when things don't go the way you planned, I still find things I can't do but that just means that I work hard at trying to do it in a different way.

    It took a while for me to realise that once I'd stopped trying to be the old me, the new me flourished.

    Welcome and good luck on your journey.

  • I must say it has been so lovely just to hear others experiences, but more importantly to know that I am not alone with the way I am feeling! Positivity I know is the key, but I just find it so hard to motivate myself some days, often feels like one step forward and two steps back! I am learning to rest and take one day at a time, but very slowly! thank you all for your very uplifting responses. Greatly appreciated. 😄

  • Hi Annie

    Have a read of my blog where I explain the struggle of trying to cope without any help medium.com/@realashjones/li...

    I hope it's useful to you and could help you avoid some of the pitfalls. Have you spoken to your local Headway branch yet?

    Take care

    Ash

  • Thank you- no I have not spoken to them yet. I have put the date in my diary for attending the meetings. I notice they have a help line- good to know! Look forward to reading your blog. Take care and many thanks

  • Welcome to the site!

    Life with a TBI can be very frustrating at times! Well, that's how I see and feel it.

    I must say, when I was about 8 months post TBI, I just wanted it all over, and be able to work and ride like I was before. Now, after getting very run down, trying to make myself better, I am taking things much easier! (Now just over2 years post TBI)

    Try and get involved with your local Headway, and you can start on some Voluntary Work when you feel able.

    Acceptance of the Brain Injurt is the hardest thing to overcome, and also Pacing yourself, so you dont get over tired. Brain Fatigue can happen very easily, so be careful not to overdo things.

    I feel that the Brain must be 'worked', gently, and it never stops healing!

    Good luck, and all the best!

    😉

  • Hi Annie

    Welcome

    I had a "moderate" TBI whilst on holiday Oct 13 by falling down six foot onto the concrete below - last thought "Sh*t, I can't" then nothing until I knocked on the apartment door, with blood on my top.

    Long story short - Turkish hospital overnight best forgotten, flew home next day. GP diagnosed whiplash, treated with painkillers, 3 weeks off work - then sent back by locum GP who thought it would be good for my psychologically. Did not cope will at all despite my best efforts and colleagues who treat people with neurological problems gently suggested I might like to get the doctor to think about the brain injury rather than musculo-skeletal injuries - got referred eventually diagnosed an NHNN Queens Square. Was off work for the best part of a year.

    Once I was over the physical effects of whiplash I looked perfectly well - so my counsellor, family and friends could not accept the problems, I'd had been depressed when going through some pretty grim experiences (court case, losing house, shedloads of money etc) so people just assumed it was all psychological/emotional.

    Thank heaven for Headway and this wonderful site - this was where I discovered that I was not alone, not "making it up", and got a wonderful amount of support, advice, wisdom, hope and laughter. Fortunately my GP returned from maternity leave and she has been great - listens to me, has been persistent in finding places to refer me to get help, and very encouraging too.

    Acceptance is vital, I was told here and my neuro said same and also "it will take time". My neuro colleagues said - recovery will take time. But I, and everyone who cared for me and my employers, wanted me to recovery completely and quickly. Acceptance is a continuing challenging. My recovery has been slow but I am now a lot better - cognitive issues mainly (zero attention or focus, attention very poor, memory once something goes in is not bad, planning, organising, sequencing actions pretty dire) which as I work as a PA has major impact. I am working almost full time but nothing like to the capacity or efficiency as before. I have difficulties with noise sensitivity (love my special ear plugs). My minor physical issues are my fingers don't work very well with fine movements or judging the pressure required to hold things - so I drop things without warning - not good when it is a full cup of coffee just as you are ready for work!

    I found Headway helpline particularly helpful to prepare for medical appointments as they helped me be clear about what I wanted to say, and also know what they might say and what services are available. They were more knowledgeable than the medical professionals about services referrals etc.

    I have used all the services on offer from NHS plus some complementary therapies as well.

    As you see, I can talk a lot when it is writing. I am not here as much now I am working but if you need to "talk" I would be happy to do so as our BIs sound similar - just send me a private message and I should pick it up.

    Good luck with it all and keep posting, (oh, Strictly Come Dancing starts tomorrow night - keep daaaancing!)

    Vanessa

  • Hi Venessa,

    It was really refreshing and VERY reassuring to read your reply. You are experiencing all of the things that I suffer from and its nice to know one is not alone! My accident is strange from the perspective that I remember nothing, apart from a gate hitting my head. The rest of the time I was in an induced coma and woke up not quite knowing where I was! I am awaiting further treatment for PTSD and have a number of issues which are similar to yours. Since the accident I suffer from weekly migraines /daily headaches and balance issues which I am still trying to sort out with traditional and alternative therapy. I think I am coping with all of the above and developing strategies in some form, but I am struggling with the cognitive effects of the accident - all of which you describe so well. I also feel a bit sorry for my family and close friends as they try to help but I just feel like I don't know me any more. However, taking on board all of the other messages, I suppose it is about learning to live with the new me!

    I am finding the ongoing legal case wearing, but am learning to hand over things to others!

    Thank you for your very kind words of support- greatly appreciated. I will message you if I can figure it out! 😄

  • Hi Annie. It took me two years to figure out how to explain how it feels.

    Mine is 'like I've woken up and I've got an unwanted new friend that I can't get rid of, she embarrasses me and let's me down, she makes me look like an idiot. I was really mean to her at first, but then I realised how mean I had become. So I held out my hand and me and my new found friend went to the shops together'.

    That's how it is for me. I had a RTA October 2012. You need to go out and discover something new to focus on. Beat the confidence before it really sets in. But Be careful not to exhaust yourself.

    There's not many people out there who has the therapists/treatment you have. Get the best out of it. Do everything they tell you to do and always remember that they won't make you do anything that will hurt you.

    Something good can come out of something bad. I now make wire pictures, which I didn't do before. I'm doing really well with it. I run workshops for Headway West Sussex group now.

    Annie from me and my new brain, to you and yours, know that things will be difficult, but you must keep your head above water. You CAN do this, your determination will help you through.

    Look at my website, which I created after the accident too. I hope it inspires you.

    Very best wishes,

    Kerry.

  • I forgot my website! Haha. wirepictures.com

  • Hi Kerry,

    Thank you for taking the time to respond and for sharing so much with me. The something good coming from something bad really hit home for me, as I really do believe it. The accident has bought so many not so positive things in my life, BUT it has also allowed me time to spend lots of time with my family, as I was always juggling my manic workload and family before the accident!

    I will have a look at the website, maybe art has something to offer me!

    Take care and many thanks

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