Living with mild TBI - where to start?

Hi I've just been diagnosed with mild TBI following a silly accident in June. I feel like everything is getting on top of me. Sure I'll start getting some guidance on how to live with this when I see my neurologist for a follow-up on Wed but wondered if anyone on here had any words of wisdom in the meantime? I feel really alone, don't really understand the changes I'm feeling and freaking out at the prospect of this continuing for an unknown period. If this is mild I can't imagine what mod to severe is like

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  • Hi Emz28, just a few words of welcome, this is a good place to get support and help or just get rid of your frustrations and anger. Headway have a help line you can ring for support and advice too, use it if you need to they understand all your issues. Comeback to us when you are clearer on what you need help with, there is a wealth of experience in coping with any issues you have. We don't judge and are happy to support any problems you are up against, meanwhile it's a scary place you are in right now, be kind to yourself, dont be too hard on yourself, it is a long road but rushing doesn't get you to your destination any quicker, rest when you need to, I can still sleep for England 18 months down the line, speak again soon, love Janet xxxx

  • I had a severe tbi 13 years ago, there are times we all feel alone and when I do I come here to remind myself that I'm not

  • Hello, how you are feeling is totally normal! I found acceptance is key. To be honest, the neurologists didn't help, so don't pin all your hopes on them! Neuropsychologist was what helped me and they pointed me in the right direction to mindfulness which changed everything. I still have days when I don't know what's going on, but they are less frequent and less scary as I know what's happening, and I know tomorrow will be a new day! Acceptance, day at a time, mindfulness :) x

  • Hi Emz28,

    My fall was also due to a silly accident in the Kitchen, 13 months ago now. Diagnosed as Mild TBI, the main problem in the early months was knowing what was going on and what the future may hold. As kellysuriol says, acceptance is key, but the problem you will have, as did I, is what are you accepting. Unfortunately know one can tell us to what extent we will recover and over how long. I was expecting to be back at work and returning to normal within a few month at the most. It was only when I got to 6 months that I began to understand the unknown nature of any TBI. I finally began to accept my new limits and started to manage the limitation just before 12 months. This is when I suddenly appeared to start to improve again. I have begun to realise this is probably not the case, it that I have accepted myself more.

    I hope this will not happen with you, advice is to try to accept how you feel at present and plan to your limitations. Anything else will then become a bonus and will without a doubt help your recovery. Check my profile to see how much of what happened to me relates to you. Send me a message if you want to chat. This helped me so much when I was at my lowest a few months ago.

    Take care and best of luck. x

  • Hi, I'm really sorry you are going through this. It sounds so like how I felt after my 'minor' TBI. Things I wish someone had told me: firstly, it feels very lonely, but you are NOT alone. You have found Headway, which is the best thing you could have done. Order some of their leaflets - you can order from their main website. I found the leaflets incredibly helpful. There are ones on minor head injury (general intro), on coping with tiredness, on the psychological effects of TBI (that's a good one) and lots more, even one on how to explain it to your GP, I think.

    Also, don't be afraid to ring up the Headway helpline. There are plenty of people, sadly, dealing with minor head injury, and it is never too 'minor' for advice, reassurance and support.

    A minor head injury can have physical, neurological and psychological consequences. It's an awful lot to deal with, especially as some of these results can take a while to show themselves. I was very impatient to get my old self back, and had to learn the hard way just to accept that the brain takes it own sweet time to recover from injury. Don't beat yourself up about it. Recovery will come, but your brain needs to work very hard to get there! In my case, the first year was hellish, the second year was a period of introversion and quiet recovery, and the third was getting back to something like normal. But everyone has their own period of time, some longer, some much shorter.

    I can understand your confusion and your feeling that everything is getting on top of you. These are very common feelings, I think. Things are 'getting on top of you' because at the moment, your injured brain finds it hard to process more than one thing at a time, and also finds it very hard to make decisions. That's normal. Don't worry, it does get better!

    Last things I wish I'd been told are:

    1. Be kind to yourself. You have been injured, and you need time to recover. Just because you're not in a plaster cast doesn't mean it's not real!

    2. Don't be afraid to tell other people, and to be a bit selfish to get what you need. E.g. if you find noise and social situations hard to deal with at the moment, just tell people, and pull out rather than stay and suffer.

    3. Keep in touch with Headway, and with this community forum. Everyone is really supportive.

    I wish you all the best.

  • Thank you so much for all your kind words and pointers. Really helps to know there are other people who know where I'm coming from :)

  • I think sometimes that when people hear mild/minor injury they assume it is insignificant, hardly worth worrying about. Mild/moderate they give a little more credence to and obviously severe is just devastating.

    It is not just you accepting and altering your lifestyle to give you the greatest recovery but then also teaching the world and his dog that not everyone responds the same, not everyone will be a ok after a couple of weeks.

    You have had some sound advice as it seems is normal for the people here at headway! It is one place you can be sure of getting help practical advice and a shoulder to lean on in times of stress.

  • The Rivermead post concussion questionaire is a useful tool for tracking and scoring the severity of symptoms- see how they change over time and maybe highlight ones that you could focus on as priorities

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