Nobody told me

I've been quite just trying and seeing how this link works ,reading other people's posts and what not.

Just a quick question, I had a brain injury and all that last year , but not a single person told me that my life would be up side down and never the same . I remember when I was in hospital I couldn't wait to get out , I did everything every one said while I was there ! But not a single person told me about depression fatigue and all that followed since I left ...

I just wanted to say that and get it off my chest

22 Replies

  • I think you will find that most of us have had similar experiences as with the brain it seems to be wait and see. Everybody's recovery is different and how much recovery is experienced regardless of severity of bi is different. It seems the hospital and doctors take the 'wait and see' approach so they are neither influencing you with a negative or a positive.

  • Ok thanks 🙏

  • I think this is very common just from being on here!i think everyone's supposed to b so grateful to b still alive after a BI that the side effects shouldn't matter!but they do,they take over so that ur not who u once were!its finding ways to deal with it and finding help that seems to b the hardest part,even years on!its my partner who has a BI after being ran over 6 years ago and he's still struggling to manage his emotions,constant fatigue,lack of sleep,lack of motivation,terrible headaches,loss of smell and taste and constant ringing in the ears!not to mention vertigo and the inability to do slot of exercises resulting in weight gain that he's trying really hard to loose!no one tells u these parts and when seeking help not slot of GPs will listen often treating it as depression which it's not!im sorry if this reply doesn't help u much but I find this forum amazing for just chatting and realising so many people have the thoughts and symptoms u have and u feel less alone!also if u need pointed in the right direction there's always someone on here who can help xxx

  • I should have been sat down and told maybe this maybe that . But nothing that's what's making me mad 😡

  • I couldn't agree more,I think people should know more about BI!its not a thing I even heard of until I met my partner and came to this forum and I'm amazed and saddened at the lack of help all of these people receive xxx

  • I think you have hit the nail on the head with your comment about finding and accessing help being a big problem for many of us. Maybe they also don't tell us anything because there is no bi services to then give us the specialist help required once discharged. It's better to say now't than to tell us we might expect to have all these problems but we're not doing anything about them!!!

  • Your right about the lack of service, neurologists will deal with the physical side and then discharge you to other services, physios will only deal with physical. They probably don't want to warn someone as they seem to just want to discharge patients as soon as possible. My partner never received any support, they patched him up and sent him on his way. He just thought this is how I am and went into denial. When he saw his rubbish previous gp they put him on antidepressants and put him on a waiting list for anger management as well as to see a therapist. For me they couldn't wait to get me out the door, the physiotherapists were terrible they were struggling with me and just kept saying shouldn't I discharge myself.

  • Unfortunately Patrick, this is what everyone finds. You get looked after in hospital but once you leave you are on your own with no idea how to manage this 'new you' that you have been given. I am sure that if there was more help in the beginning it would cost the NHS so much less money overall as people would be helped back into a more 'normal' life than many of them finish up with. I was told by the consultant after my husbands bi,' other parts of the brain can take over from the damaged part'! If this is so, why don't we have properly managed therapy to show people how to make the most of this. Just leaving people to get on with it doesn't do much for long term recovery. If someone had a leg amputated there would be physio, fittings for artificial limbs, pyschiatrists etc, all involved in helping that person learn how to cope, but with brain injuries - nothing!

  • New me new you , again this is not good enough. We should have been told. Simple

  • Morning they never do I think the emotional and mental issues such as depression, fatigue and confusion are just as important as the physical. They should prepare you that you also will grieve for yourself because the life you had isn't there anymore, and life will bring restrictions that weren't there before. I think doctors could do with having some more training covering those areas even if its just to warn a patient, but also learning to listen to a patient. The doctors I've met ha e only been capable of talking to and over a patient. They could learn so much more from letting a patient talk, new variations of symptoms and new ways to deal with them.

  • I couldn't agree with you more. They are doing more harm not telling people it's common sense to tell people that maybe maybe etc

  • What they are missing is if they told you everything from physical, emotional and mentally you would have fore warning. It feels like they discharge you and throw you out in 'no mans land' and they hate it when you dare to ask to see them again.

  • Hi Pat-rick, I think b ow you will know it's par for the course. I'm with you I'd rather have been told, even during meetings that happened in rehab I was never actually told you'll never get back to where you were.

    But, I can see some people wouldn't respond well to that, I'm angry about not having been given information about all the avenues I could go down to improve the outcome.

    I understand that the NHS can't provide the actual treatments but tell people about what may work for them and let them choose to try or not.

    We'll help with info where we can, just remember keep trying and practice, practice, practice, that's what makes new pathways in the brain. Xx

    Janet x

  • I think that there is a real fear among the medics and even the support services to talk about the emotional challenges that people and their familis face after BI. They pay lip service, and they focus on the things they can fix. They need to provide free accessible ongoing counselling and more support group where people can say it as it is for themselves and work out strategies. Accepting loss and a new more challenging life, and the struggles is not a easy journey. Without support it leads to depression but depression is not the issue it's a lack of openess and support. There is no point telling you at the beginning because they have so little to offer. Headway and forums and love ones like this is where you can begin to deal with the reality of BI. If carers and friends were supported to care were the ones who could help emotionally on this BI journey.

  • pat rick1 no they just kick you out. i dont suffer from depression, fatigue yes.

    you see the thing is, they cant really tell you, because its all guess work on their part, they havent had a brain injury so they dont know whether well suffer aggression and mood swings, noise intollerance, inappropriate behaviour, epilepsy, fear of strangers become a recluse.

    find yourself a hobby, i draw and do watercolours,very badly but its fun and i enjoy it and i can do it at home, i also do photography ( my wife and i belong to the national trust ) and although i dont like crowds we get there early so i can take my pics not just of the house and landscape, but i like to paint flowers as well.

    oh i forgot to say welcome and look forward to chatting again


  • Hi Pat-rick1. Sadly it is the case for so many. My husband pushed me out of hospital in a wheelchair, I had speech and memory problems as well as constant migraines and yet when I saw my discharge notes a couple of years later they said I had made a full recovery! 5 years later and I am still having physio, take regular meds to cope with the headaches and am still trying to get the balance right to not get too fatigued. I was on a medical ward and seemed to be the youngest by some way. I'm not sure if they weren't used to bi or just too busy and needed the bed.

    The best help/support/advice I got was from Headway. They really understood. Life is different to how I imagined it might be but I am glad I'm still here to see my children grow up. There are good days and not so great days.

    I'm sorry it's been so tough for you. I hope you have some good days.

    Best wishes Blim

  • No they don't tell you and i guess it's because not everyone's bi and recovery is the same. Thank god for sites like this where you can be assured that what you're experiencing is not out of the norm. Hang in there Rachel x

  • Hi there and welcome. We will always be open if you want to chat or let off steam- which you will - on your journey which, otherwise, can be really lonely at times. We all feel much the same - the NHS is amazing and saved my life but the follow up and the preparation for what to expect was, certainly for me, lacking - I had a few leaflets given to me but I essentially had to create my own rehab and therapies (music kept, and still keeps me, sane) and research places like this site. The after effects of brain injury are sometimes invisible so more emphasis seems to go on physical illness- this needs to change but until it does, there is help out there and lots of great sources of help and I am sure folk on here can advise you of things in your area.

  • Thanks abi x

  • Morning All,

    This is a subject very close to my own heart as my BI (Neuro-surgery) and subsequent raiotherapy/ongoing chemotherapy have put me through the wringer.

    When I mentioned my developing cognitive impairment to an occupational advisor (Who was supporting me in conversations with occupational health and my employer) at The Beatson (West of Scotland Cancer Centre), they happened to mention a programme being run by NHS Scotland's neuropsychologists in association with MacMillan.

    The study is called Transforming Care After Treatment (TCAT) and although the group was pimarily related to the investigation and understanding the damage and side effects of chemotherapy on cognition, attention, emotion etc, there are a lot of similarities with Brain injury. This was a voluntary programme with a number of former patients across different genders, age groups and diagnosis.

    1. Awareness:

    Everyone in the group felt that there was no mention of the potential for cognitive impairment, be this from surgeons, clinical nurse specialists, neurologists or oncologists. Following debate amongst the group it was mentioned that this may be because there are a lot of unknowns. As said above, everybody's brain, BI and treatment can vary, as can individual's responses to treatment.

    I mentioned this to my surgeon during my first annual review yesterday and his view was that we simply don't know enough about it yet, there is not enough hard evidence, as it were. I can see where he's coming from, isn't science about having evidence to substantiate things and help to develop a solution? "Of course we have evidence!" I hear you cry, "We've all been telling them this for ages!" This is how it starts. There is a growing number of patients raising this awareness that something 'isn't right', but the effects we're suffering can't be quanitified by physical or visual examination (Who knows your brain better than you?), although the community has now acknowledged "chemo brain".We can do some truly fantastic things in the realm of neurology and neurosurgery now but in reality we still know VERY little about the human brain, and I think there is a reluctance amongst some of the more sensitive professionals to speculate and 'set the fox amongst the chickens'. Some patients might drive themselves bonkers thinking about whether it will happen to them, what it might mean, etc etc.

    2. Fatigue:

    From an individual experience, my fatigue post-surgery was signifianct. Not only was my brain attempting to recover from the trauma of the surgery, I had experienced two post-operative infections in the wound (One of which was life-threatening) which significantly prolonged my recovery. Not only that but my radio and chemotherapy are hampering my brain's ability to repair itself as quickly as it may have done (As my surgeon put it last night "Your brain took an absolute hammering, got irradiated and is now being rinsed by very powerful drugs..."

    I must add that I am a TERRIBLE patient, I'm impatient and didn't want to accept my limitations.

    In hindsight, the best things you can do to combat fatigue are:

    - Listen to what your body is telling you! If you're exhausted, try and rest! It won't thank you for pushing yourself beyond your limits and you need energy for your brain to rest and recover. If you have tasks you need to do, try and do them at your 'best' time of the day.

    Even if your BI happened a long time ago, don't assume your brain has done all it can to get better. This is the most complex organ in your body we're talking about, it developed (and may still be developing) over years!

    - Do try and get some kind of exercise. Nobody expects you to be a triathlete, but my view is that if I can boost my fitness levels gradually, my body won't need to work as hard, I'll have more energy in general, and if I can improve the blood and oxygen supply to my brain, great! Not only that, but when I'm exercising I can 'tune out', reduce sustained concentration and my mental fatigue actually lessens.

    - Dietary adjustments/ 'Brain food'. It goes without saying that a healthy body is a good idea, but oils such as Omega 3, 6 and 9 are proven to be beneficial to brain health. I'm now taking fish oil supplements on a daily basis.

    3. "Plasticity"/Effort:

    Again, as mentioned in an earlier post, there's evidence to suggest that the brain can "recruit" other parts or areas to assist with or take up the function of a damaged part. Functional MRIs post-op in some patients have seen areas "light up" that wouldn't previously have been associated with that task. Based on what the brain is used for throughout life, it is possible for the brain to 'reorganise' itself and form new connections. This is more evident in younger patients but has been seen in older people too.

    Another way of thinking about plasticity is to say...when you want to do something or think about something, your brain sends electrical activity from point A to point B, think of it like a motorway, if that's easier. MAYBE in BI patients, your 'motorway' has been closed or damaged, which means it can take bloody ages to get to the desired result. So! If your brain exhibits plasticity, it might take a different route "A roads" or "B roads" to get that information to its destination, which takes a bit longer but avoids the problem on the 'motorway'. In theory, your brain should become more familiar with the new route over time and find it quicker/easier.

    Post-surgery, the operation to my motor and sensoy strips meant that I had reduced muscular control and sensory/'feeling' input on my left side. Over time this has begun to recover, BUT, I find that if I am particularly tired, I start to experience difficulty again. I spoke with my surgeon about this and speculated that if my brain had shown plasticity as above, and another part of the brain was 'sharing the load', in the event of fatigue would that part decide, in essence, "Hold on, I'm too worn out to do both, I've already got work to do, nuts to the extra!". There was no definitive answer to this but my surgeon agreed it was a reasonable layman's metaphor and quite amusing.

    Something my TCAT group discussed was two MRI scans of a pre and post chemo brain. In the pre-chemo scan, the patient displayed only a small area of activity to do a certain task. In the post-chemo scan of another patient performing the same task, their brain lit up like a christms tree! It was having to work an awful lot harder to achieve the same result, which may explain why we feel 'mentally fatigued'.

    I've got to caveat everything above by saying I am NOT a medical professional (I actually work in telecoms!), everyone's circumstances and treatment are different, but I am very, very keen on learning about our 'difficulties' and always quiz and question my specialists and take advantage of any group activities or studies. If I can learn about it, I can understand it, and if I can understand it, I can beat it. Everything above is from my own recollection, I hope the metaphors and examples make sense and are thought provoking.

    Here endeth the semon ;)


  • Wow Alex have you been sneaking in my brain? I had to read your post twice - just to check. I have thought similar thoughts to yourself after my BI (Encephalitis) last year, but have never been able to collate and verbalise those thoughts. Thank you.

    Your post is proof positive (to me) that it is the patients who will teach the professionals on how to best assist us all with our daily and long lasting difficulties. To some degree I can forgive some "professionals" their lack of understanding. Why? Because the brain is the most complex and marvellous complicated human organism that exists and for me this is further complicated by the uniqueness of every individual brain. Talk about a needle in a haystack!

    Personally I know I couldn't help three different people with three different brains,because it is too damned complicated. So I have an easy cop out - I am not a medical person. I do however accept that the quality of medical support is rather patchy and depends on where you live how succesful a person is in gaining adequate support.

    For myself one consultant condemned me to lasting regression and probable death with a mis diagnosis of my condition when I became ill last year.This was a man who did not listen to his patients. It was only when my family raised one hell of a stink that a neuro-consultant was called in and my recovery became established. The point I am making is that it took people who were well, to fight for a very sick person, to be able to receive the medical attention required. Not everybody has the family support I had and I guess that there are some out there that have not been so lucky. Scary stuff.

    For all the negative stuff I have experienced there are very many positives. I am here - is top of the list. Followed by having access to this site (when I remember how to use it) -Patrick I have found it to be of some comfort when I have particularly bad days to pop in and read other people's posts - it kind of helps me to know that I am not on my own and I am not going out of my mind feeling and thinking often quite obscure thoughts. I hope for you that you can find this site offers you some support.

  • Hi Clare,

    You're quite right, with our particular issues I think we are definitely going to be leading the professionals, rather than the other way round.


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