Does it get better?

Hello everyone.

I'm having a rubbish time at the moment.

I was just wondering if things do improve..? Or is a lot of my recovery to just realise things aren't necessarily going to improve..? I'm 1year in. I've been told various things by different people about time scales, etc.

I was hoping to hear what others have to say about it?

Thank you

13 Replies

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  • Nobody knows, it's so unpredictable. Stay happy and healthy and recovery is vaugly a stepped logarithmic graph with periods of "oh my life is like this now" and days of "ooh I can do this now". 1 year in is new, plenty to change yet

  • A year after the head trauma I had I went to headway local office who couldn't offer me much but had interesting services. They recommended I go to my gp asking for referral to head injury unit who after some months saw me and gave me referral to NHS therapist. Which was nice.

  • Hi Pete... Timescales are a slippery thing really. We are all different (before our BI, our BI s are not exactly the same and our bodies react differently and our circumstances may vary wildly) and there are so many factors that affect recovery so there are no hard and fast rules ....

    but it is generally accepted the bulk of recovery happens within the first two years- for some people that could mean after six months or year, for others it may take longer....

    BUT even after it seems the recovery has peaked there will likely still be subtle improvements that may not be noticeable but they are there. Often these can be because we have learned to adapt in certain ways or have found workarounds, but they are there and if they help us in our daily lives then are triumphs, albeit it tiny ones ;)

    At the end of the day I don't think anyone escapes this unscathed. It changes us...that may be a huge obvious change for some or a more subtle change for others but there is no way anyone sustains a BI and is not changed by it ... but we have an element of choice in how we react to our new circumstances and those changes do not necessarily have to be (all) negative - acceptance plays a huge part.

    I found keeping a journal helped me to spot the changes that have come about over time. I am ten years post BI and stuck with the memory of a dead goldfish, but with strategies and support my life is good.

    Try not to worry too much about staging and timelines and just be kind to yourself, give your body and mind what it needs to heal and try to be patient.

    That is my two penn'orth ;)

  • I think the 'One year' milestone can be a bit of a disappointment Pete. We tend to look back thinking what a long time a year is and how it MUST be significant in recovery terms. But brain injury has no time limits ; progress takes as long as it takes ,,,,,,,,,,,,,and none of us, not even the doctors, know if or when that might be.

    So if you can take care of yourself with a healthy lifestyle and accept any help available, whether it's from the physio, the ophthalmologist, any other health professional, whilst accepting that progress might be one step forward - two back, then you're building a sound basis for further improvements.

    I'm 5+ years on and it's only this last year that I feel I've reached an equilibrium. my memorywas atrocious for the first 3 years but, somehow, I feel I've clawed some of it back and have begun to answer questions on 'The Chase' (and even a couple on 'University Challenge' !) And several times this year I've really surprised everyone by coming up with obscure names that they were struggling with.

    My memory will never be as sharp as it used to be and my balance will still be a bit embarrassing at times, but I no longer miss the old me and my life seems as OK as the next person's.

    The passage of time is your friend Pete, so try to embrace every new day ! ;-) xx

  • My son suffered his tbi 10 years ago. We felt like you do now but we have come such a long way. I would lie to you if I said it was easy or still is. We take each day as it comes and always look forwards not back. Stay strong things will get better. Don't beat yourself up or judge yourself just be proud of what you have overcome

  • Morning sidekickpete, 'better' is a slippery fish where BI is concerned, I've just passed my 2 year anniversary, and some days are better than others. I'm 'better' than I was on the day of the haemorrhage, when I was dribbling-insensible-near-dead, and I'm 'better' than I was during the two weeks in hospital, where I'm sure there was quite a lot of "Nurse! She's trying to get out of bed again!" behaviour. What I'm not is 'better' in the way non-injured people think you get 'better' after any other operation, it's taken me this long to fully accept that things are never going to be the same again.

    That wasn't really your question, though, you didn't ask "Will I get better?", you asked "Does it get better?" Yes, I think it does, but it's not a straight-line trajectory you can plot out on a graph, to declare that at a certain fixed point you'll be x% better. Before our BI, we all had good days and bad ones, periods where things went well, and periods where they didn't go so well, that's human nature, show me a person who is always happy, and I will look for the flap in their back, where the batteries go.

    In this shiny-happy Fakebook and Insta-whatever world, some people are competing to show versions of their life that are 'perfect', and I think that's unintentionally offensive, to depict this false-front, where everything's always just right. (Side rant about #SoBlessed filtered photos, where the kids are never red-faced from screaming tantrums, and there's never a pile of laundry that hasn't been put away yet, when some days I'll try to put my boots on without taking my slippers off first.)

    None of us are always-OK, we peak and trough, it's my personal opinion that those of us with BI just notice the difference more, the chasm between what-was and what-is is something that 'other' people don't have to process virtually every day. I'm trying not to rant about all of the adaptations and work-arounds we weave into our lives, that can be very draining because, at the end of the day, they keep us safe.

    It does get better, or, perhaps easier-to-deal-with. All of us can look at how much progress we've made, and be proud of that during these periods of stagnation that pop up along the way. They will keep popping up (I'm six months into one, it's vile.) all we can do is keep going. I'm not going to promise you sunshine every day, and rainbows, and unicorns, because that's not realistic. I'm not going to suggest that on some arbitrary date you'll wake up and not have a brain injury, but I will point out that you do keep waking up, even on the days we feel like we're trudging through knee-deep sludge, which is in danger of sucking off one of our wellies, and leaving us to sock-hop, we keep going.

    A long-winded way of saying "Some days are better than others."

  • Every day we make very, very small improvements and it is only looking back a year do some people see any progress.

    I am not one for poetry or great sayings but strangely found the words of pop song strangely apt.

    "Life, it's ever so strange

    It's so full of change

    Think that you've worked it out

    Then BANG

    Right out of the blue

    Something happens to you

    To throw you off course"

    "Slowly, oh so very slowly

    Except that

    There's no getting off

    So live it, just gotta go with it

    Cause this ride's, never gonna stop"

    play.google.com/music/previ...

  • Lots of very wise words here! Whether one already has injury or illness it is never sensible to predicate anything on the concept of a 'certain' future. Life isn't like that - but after head injury the ride is likely to be bumpier than for others...

  • Thanks everyone.

    I kind of already knew there was no real answer. I'm just in a huff at the moment.

  • Feel free to huff away Pete ! : ) We all have 'huff' days - it can get tiring, working round physical/cognitive issues just to accomplish normal everyday tasks that we seemingly did so easily and took for granted prior to injury !

    General medical opinion used to be that you make the most progress in the first 6 months, then continue up to 2 years. However, taking into account Neuroplasticity it is now accepted that there is no time limit on recovery - we can potentially continue for the rest of our lives, albeit at a slower, less dramatic rate. The brain is a clever little switchboard - it will do all it can to reroute pathways around damage, where possible.Physio and cognitive exercises can help to stimulate this process : ) Angela x

  • Hi there a dont want to be the hearer of bad news but i suffered my accident in 2009 fell fractured my skull and subdural haematoma( bleed on the brain) at the beging u thinks thers nothing wrong with u but then it got harder for me a was realising a couldnt do the things i used to do life got hardrr for me but not impossible.not everyone is the same and a wish u all the best in your recovery and the future.taje everyday as it comes because were lucky to still be here some times u feel that then somedayz u feel like giving in .but 1 thing thats important and can bring u some solace is here on the forum because u know thers other people out here with the same problems if not worse.so all the best in the future craig

  • Hello Pete Some very wise words above - Gaia makes a very valid point -"those of us with BI just notice the difference more". One year on from my BI my husband pointed this out to me when he asked me why I was questioning everything that wasn't quite right for me. He told me you are doing really well, although it is almost a standing joke in our house that you don't give me a message to pass on because it will simply disappear into the ether because I will forget. Complete opposite pre BI. Dependable reliable Clare - that was me. No longer.

    I don,t know if this is the same for every-one but since my illness I do have a tendency to analyse things that I do and if I am honest, I do know that I over analyse on occasion. This I have discovered for myself leads to and enhances those feelings of frustration and anxiety that I am not progressing either period or even just a little bit. We all of us have personal standards and whilst I think this is important and useful, I am slowly learning not to be too hard on myself and to give myself credit for what I am achieving.

    It is taking me a long time to accept the "new" me but I tell myself that slowly slowly I am getting there. What i do know is that I will never get back to "there" - wherever that was, because I have in truth forgotten what "there" really was. ( I see a pattern emerging here)

    BI is a difficult condition to deal with as unlike any other injury we and others cannot "see" it or " physically touch it" and like yourself Pete I feel these frustrations the illness brings on a daily basis. I also feel sadness for the loss of the old me. My only way to deal with this is to take time out on occasion to really acknowledge my irritation and sadness and all those pent up emotions of regret and anger etc and to have a "chat" with myself and basically give myself permission to feel like this for a little while. Works for me. I can usually return to "life" a tiny bit refreshed and ready to carry on - until the next time, which I do know there will be a next time- at least for the foreseeable future.

    Personally for my own sense of sanity I am ignoring whatever any one says about time scales because for me that doesn't work. I look at timescales and to be honest I feel threatened by them, as if they are telling me you should be at this stage now and worse still, you have reached the point of no return - No Thank You - this is not helpful for me. No, with support from my GP, family and friends I will make my own way. When all said and done we are all different. Please look back on what Cat says, she is so right "progress takes as long as it takes" (hope you don't mind me quoting you Cat).

    I will finish now but will say that I recognise what you are saying Pete and understand when you say that you are having a rubbish time at the moment. I often find myself in the same place as you are. I have good times and also do have bad times one year on from my BI. I guess it's ongoing........

  • I'm 15 months on from an SAH and it's mostly when I look back that I realise how far I've come but I also realise I still have a way to go........but the graph is an upwards curve. The SAH exacerbated an already arthritic knee so after years of asking, I finally got a knee replacement. So, every cloud, eh?!

    Just live in the "now" and the "now " will keep getting better.

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