2 years since my injury and I'm starting to realise the person I was isn't around anymore, and I'm not sure what to do about it. I contstantly think that as I seem OK to people I should just shut up and get on with it, people have a lot worse outcomes than me and I should just be greatful to be getting on with life.
I left hospital after my brain surgery during covid and thats the reason I think I had no support or advice from anyone. They checked me on the ward and said I only just passed the cognative tests to be discharged, but discharged I was.
I'm now starting to understand that I don't like this new me and constantly worry about letting people down and them thinking that i'm just stupid, lazy and just moaning. They tell me they don't think like that but I head tells me not to beleive them.
I had coucilling of some sort from Mind and it helped a little but I've realised there seems to be a difference between Mental Health problems that are caused by physical Injury and those that are not. So the help only went so far. I'm going to see the doctor next week and ask to see someone but I think that will take so long I'm not sure if it is worth the effort. After 2 years I can't see what will help.
The problem I have is my brain works on a logical and emotional level.
Logic knows that I have been injured it was actually a serious injury and the outcome should probably have been a lot worse I got quite lucky. The problems I’m having are not as bad as so many have. But they are problems, they are ones I’m having problems coping with and they won’t get better. So I read and understand the facts and great information from headway but my emotional barain won't let me do anything with that information.
The emotional part because of that says I should just shut up and get on with it as no one wants to know about the problems I’m having as everyone has their own issues and doesn’t need me burdening them with mine, after all I should be happy I’m alive.
It is so annoying, upsetting, frustrating that I know and can see these 2 different sides but there is nothing I can do to work out what to do with it.
Still I'll ask the doctor but I'm so pessamistic, I'm already thinking nothing anyone says will help.
What do Nuero proffesionals do? I don't even know what one I should be trying to see?????
Thanks for reading my ramblings.
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Bushman1926
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All I can say is even although it feels that there is no support we/I am here for you. I do believe that there is help but am still to find it. but you are not alone.
Hi Bushman your comment The emotional part because of that says I should just shut up and get on with it as no one wants to know about the problems I’m having as everyone has their own issues and doesn’t need me burdening them with mine, after all I should be happy I’m alive."
I totally get, I don't have the answers for you, but we are alive together to find out.
Hi Bushman, this is what I struggle with the most. I know I am not myself. I know I cannot think like I used to, my personality has changed and I hate it. I know what I once was, I can see it but it isn't me.
I had 2 sessions of CBT through my local IAPT (who really do seem to care) then they said it wouldn't work due to my poor short term memory. I have now started integrative therapy, but to be honest it's just the most confusing 45mins every 2 weeks.
The worst is things "leveled off" a while ago, I stopped getting better or worse. So I guess this it.
I had my accident during covid times, so there was only telephone assessments, which were unhelpful. Recently my case has been rejected by Neurology (which had me thinking I'm just making it all up), but my GP has sent another referral.
I spend most of my day upsetting people, letting myself down and overreacting, but everyone says I'm alright so I must be alright yeah?
This does seem like a final hurdle, the last piece of the puzzle to be getting back to normal but I don't see a fix.
Sorry if this is a bit of a ranty reply, (kind of went off on one) just letting you know you're not alone.
just wanted to let you know that yes, things can slow down - and your healing is still going on slowly - your brain may just be working on things you don't notice.
Plateaus happen - but it doesn't mean you'll be there forever.
And yes, it is also true, that some things will hang on and the normal from before won't be normal for the new you.
Emotions do change for people - the first 4 years or so people tend to be quite easily set off - the brain is really hurting and literally irritated. How long that lasts, or exactly how it shows, is different per person. I was very calm even when stressed in my previous life. After the injury anything and everyone got a super irriated and annoyed reaction from me - though I was buried in so much sensation internally I wasn't aware of it. Now, after creeping up on 15 years out, I am even calmer than I was pre accident. It isn't necessarily a good thing - it takes me a long time to figure out how I feel about things, and often people make judgements based on what they perceive your initial reaction to things is. My point just being, things will keep changing, even if you aren't aware of it. It takes a super long time to be aware of things - I am still working on it - some things can be quite subtle and also it is a moving target - as we go through life things keep changing.
My long winded way of saying hang in there, you're still making progress, even when you can't necessarily see it yourself.
I’m in a similar position - coming up 3 years. And sick getting up everybody feeling like a poor photocopy of me. Getting so frustrated as the ‘gap’ slaps me in the face almost constantly at work or with cognitive loading, and that’s before living with the confounding fatigue. Everybody talks about accepting the new me, and tells me tofocus on my strengths, which is hard when they are the old me’s mediocre.
However, I’m undergoing Interpersonal therapy (IPT). This is a 20 session therapy that focuses on emotions and relationships, in my case my relationship with me. I’m about 1/2 way through and I’ve had to go to some very uncomfortable places but it’s really helping. Therapy will not take to the end of the road but it will (hopefully) put you on the right road. And like many things the more you commit to it and are brave within that safe space the more you will get out of it.
I would ask your GP specifically for this, if you are referred to your local IPAT (early intervention psychological therapy) service the usual offering is 6 sessions of ‘standard’ counselling and this, in my view is unlikely to be enough or the same therapy.
Other things that have helped me get closer to being ‘me’ that might help, if you have not already tried: behavioural optometry, concussion physio. I’m also just starting some work on my ears. I wear noise cancelling head phones a lot - over stimulation and distraction.
I’ve also changed my diet: now gluten free and dairy free (total nightmare) but it has reduced brain fog.
Finally exercise , I’m at the gym or doing something daily. For me this helps with the frustration, and I’m able to cognitively switch off while I’m there. For me it’s a differing type of energy.
From my own perspective, at I forget how many years out - I keep saying 10 plus but it's likely closer to 15 years...
People who are freshly injured, and yes, you are still fresh - take quite awhile to become aware of all that is going on with them. Being in some sort of program for the brain injured will help with that to a certain amount, and will also help you learn some coping strategies.
I was told right off to stay completely away from programs whose focus is on mental health - it is very easy to mistake the symptoms for brain injury for mental issues. The therapies and ways of interacting with people with mental health issues, will often set people with brain injuries back.
This is why seeing a neuro psychaitrist or neuo psychologist is so important - they are trained to know the difference and can provide the correct therapy, or direct you to it. I think if you ask Headway they can give you some names - you can see a neuro Psychiatrist at least over zoom, I believe, so that helps accessibility.
Most of the healing happens in the first 3 or 4 years so you do want to get to someone who can help you make the most of the opportunity - and don't panic - you keep healing after that, just not as fast. The neuro psych can and does often refer to others who can help you in a way that supports you, so you don't have to run around trying to find things piecemeal.
Your emotional brain has a point - and it is true that you don't have to run around telling everyone you know what happened to you and sharing every thought with them, blah blah blah.
Your logical brain hopefully will win - it will be the part that goes hmm... I know I was injured, I know I didn't get support or much therapy afterward, people are telling me there is more to this than I can be aware of because I have an injury. I guess I better get some facts and some coping strategies, so I can manage myself and my healing properly. It is ok, emotional brain, to feel how you feel. It really is ok. And logically, I will still go ahead and seek treatment and information on coping strategies, etc etc and because I am not an expert in this, I will seek one. I don't have to figure it out all on my own, because there are experts who do get this, and I am not burdening them - that is their job.
Does that help?
Do look after yourself. This type of injury can cause a lot of havoc if we are unaware. Life can be better.
And yes, there is an emotional component - you emotions may also be impacted by the injury. Which is why seeing a pro who knows the difference is really key.
hello, I know exactly how you feel, gosh I have been through those thoughts many times and in that place in my head. Dissatisfied with myself, knowing it’s not enough as I am, how do I get better? I look fine on the outside and can function enough to fit in, but it’s not me, and it’s all very much a struggle. I am 6 years on, and I would say the last 18 months I’ve made the most recovery. So don’t think this is as far in recovery as you can get, it’s slow, but you can still recover more. Get yourself referred to a neuropsychologist, it took a year to get my appointment, it’s worth the wait. They deal in how a injured brain functions, this different than mental health counselling. I had 4 years of this and it’s really helped me work out how my brain copes and how it functions now it’s injured. You are still very much in early recovery, it doesn’t matter how long has gone bye, you can still access help and learn how to accept this new way of functioning. Also consider that you may be suffering from depression and grief. Discuss all this with your GP, they don’t always have much information or experience in brain injury, so really push for a neuropsychologist, there should be one at the hospital you had your surgery at, or if there is a local neuro rehabilitation team. Best of luck. There is hope
I think that you may benefit from input from neuropsychology and maybe neuropsychiatry. Don't get scared off by the long titles, they specialise in brain injuries. I too have had problems with motivation or the lack of.
your story sounds very simular!! Dig deep!! You face a lot of heart ache, frustration!! Hope u find the resilience down there somewhere. Hardest challenge is letting go of your past!! The challenge will be accepting/ adapting the NEW you?!! Think you’re up for the challenge!! Keep in contact, would love to know am not alone on this very personal journey!! Joke have 1.5 neurons in a very dusty attic?!! Have refilled memory’s. The future is the next TASK!! 🤞
If only Drs and specialists would read what has been written here, like a lot of people here I still look the same as before my TBI but my brain is most definitely not the same. I struggle with nearly every thing I do throughout the day. If more than one thing needs doing I stress about which to do first and end up doing none of them, I can't cope with noise, bright lights, can't do mental maths (which before was no problem) can't spell, can't remember what I have read, the list goes on and on. I used to be so independent and would tackle anything confidently, and now I am just a worrier who can't do things properly ! I was put on anti depressants which have helped but I would rather sort out the problem with my brain and not mask it with tablets. My neighbour told me yesterday that I was so much better now. It's an act we all put on as it is easier for everyone to think we are better, if they can't see the problems they think they we are healed, and everything is ok in the world. All I can say is struggle on, try to accept who you are now, do what you can, well, and try to limit what you can't do or if possible stop it altogether. I am 4 years since TBI and have stopped going out as I can't bear multiple conversations around me and can't taste or smell any of the food or drink, it seems a total waste of money. But, I have started going to an exercise class, which involves no talking just listening, and as long as it is not too quick and no more than 2 instructions I am ok, but when she adds another movement my brain can't cope and I probably look like an octopus, arms and legs moving in all the wrong way 😁 But I feel better after it and to me that is a big bonus. Try and find things that you enjoy, it doesn't matter if anyone else likes it, but if they do that's a bonus. Do crosswords, read, draw, jigsaws, clear out what you don't use, wear, want anymore. I find having less clutter around is a lot easier on my brain, no opening a cupboard or drawer and finding it crammed with things. Have you tried brain puzzles online? I find them very good but I also find some frustrating as I am not as quick as I was, but when I get a higher score I feel quite pleased with myself. Is there a Headway near you, I go to Headway meetings once a month and that is the best thing I found since my TBI, you realise you are not alone, and can laugh and chat about things and find useful contacts that others have used. Learn your limits, I try to rest when I need to even though my family don't understand why I'm tired after visiting or conversing with people, or just shopping. Or do as I do smile, and in my head I stick an imaginary two fingers up to those wo don't believe we are different. Do something you enjoy as often as possible, take care and anytime you feel down come onto this site.
I agree, meetings are great, even if you don't feel you are a crowd person. I got a lot out of group programs - though I have to do ones offered on zoom as I don't tolerate all the stimulation of meeting in person/having to travel there/etc.
If i can get some motivation from somewhere i'll try a few things. Seems a visious circle sometimes, doing things to help you feel better take some effort to do, making that effort tires you out and you don't have the energy to do it....... 🤦♂️
Hope the doctor will back me up when I go to see him, I think he will. I just hope the wait to see someone isn't too big.
It does help coming on here, good to remember I'm not the only one and to remind myself that there is something wrong.
Neuropsychiatrist. Take Omega 3,6,9 Vitamins. Help memory, same with Ginkgo Biloba. And Pro Plus Caffiene tablets to get you going.
They do another brand with Glucose that’s cheaper, that helped me not having any sugar at all and boosted my energy.
I swear by these. So chomp away. Cheapest best Quality is ASDA Omega 3,6,9 , Caffiene cheaper than ebay etc, Ginkgo not sure, maybe Holland Barrett and Garlic 2000mg with Alicin (no idea what that is).
Pro Plus ASDA have a deal on at the mo. 3 for 2. And same with Omega 3,6,9. It says heart health on the front but it’s brain. I know these work.
B vits and Follate Acid helps as well. I don’t take often but when I do, I get a boost like the Omega 3, Garlic and Pro plus gives me daily. Then take pain killers and wait till they kick in.
Hi Bushman. I see you're at the tricky 'crossroads' where the past is still too recent to let you get on with the present. At the 2 year point it's easy to assume we should be 'over it now'. But brains don't heal and move on like other organs, and time can feel like it's standing still.
Ask your GP for a neuropsychology referral - the sooner the better to allow for long waiting times. Life can, and does, improve as our grip on the past loosens and we adapt. It's just a long drawn out process.
Meanwhile, try (despite winter weather) to get outside often with no aim other than keeping moving and taking in surroundings ; the boost of feelgood hormones can create happier and more constructive thinking.
On down days the thought of walking round the park can feel a bit 'so-so' but when I make the effort I always walk home feeling a weight has been lifted.
I love gardening so I've always something to keep me busy and creative in summer ; winter not so much so alternatives such as reading, crosswords and DIY come into play (as well as walks round the park and along the river). And cycling has been an amazing escape for me. My mobility isn't great but I can drive to the quiet 'Pennine way' and cycle for miles - so empowering...
Find something which gives you a good feeling Bm and take things from there. But please do get a referral asap..... and keep talking ! Cat x
Ref you second post about the energy required to help yourself. It took me a long time to realise that I need to put me on the list of things we need to do and people me need to look after, let alone move me to the top.
I’ve since realised I needed to prioritise me and my treatment above everything else, otherwise I was never going to get out of a very similar cycle that you appear to be in. It wasn’t and isn’t easy. However I had to prioritise me if I was going to get better. The things I thought were going to go south if I focused more on me didn’t.
You have got this bushman, you can and have the energy for this. Indulge yourself be selfish, the rest of the world will still be there,. You’re important, you’re hugely valuable, you’re worth your investment, afterall returns could well be life changing…
Thank you for sharing that. I honestly could hear myself when I was reading it and thought "I'm going to show this to my family so they believe it's not just me".
I haven't found any magical solutions but I have found mindfulness (I use Headspace) really nice. I also suggest finding something you really care about / believe in and doubling down on it. Risky yes, because you might find you can't do it as well as you'd hope but I found believing in it more helped. My thing was gardening and I read books about how meaningful it is and good for people. So now when I do it, I feel I'm doing something so meaningful that I'm not too bothered by my limitations.
I also look back over my life and realise how many times I have changed. It's what happens. Yes, being hit by a speeding car was an unnatural and sudden change but I have changed before and still found happiness and meaning.
Go for it. Get referral. Forget about it. Note it down because over twenty years I’ve had at least 30 referrals deleted so unable to see anyone then forgot.
Neuro,ogist, Psychiatrist, get an EEG If you can. £1,000 that will prove precisely what’s wrong, but be warned. It can cause epilepsy in a few.
Just look online, it will show local hospital with an EEG that you may get a referral if you wink at your GP. This will get to the bottom of things.
You get see a specialist by booking direct with them.
It costs a few quid but GP may do a referral as well.
It’s finding the best person to suit you for a true diagnosis first.
If you had the EEG results to show them, they won’t be guessing as much.
I could hear myself in your post. I am six months into my MILD brain injury due to tripping over the handle of my bag and falling. Getting better daily, or so I tell myself. I guess faith in the human body repairing itself is a big part of getting through the day. All I can say is - me too.
It is just over 2 years since I suffered some form of brain trauma, not sure what (went in for OHS and suffered a stroke post op & numerous occasions needed to get body restarted), but I’m guessing a Hypoxia based condition.
My trouble is getting the clinicians to go beyond the ‘depression’ diagnosis. I have become a very different person to what I was, due to issues relating to memory, cognition, fatigue, poor concentration as well as suffering what my wife calls a ‘lack of social filter’ - in other words, I apparently say things without any regard to the effect such comments may have.
I’m also prone to balance issues and light headed/ fuzziness which means I have had to give up my driving licence, cycling and even leaving the house without a supporting adult.
I no longer bother with socialising because I just can’t be bothered trying to explain to people why I talk, think or act differently than before. I find that unless someone can see a physical injury or scar, they are not able to comprehend what you say in explanation.
I tend to use the phrase that I have a 2 year old brain in a 59 year old body - with the conflict such an issue brings with it. My 59 year old body wants its 57 year old brain back, whilst my 2 year old brain wants my 59 year old body to do all the things a 2 year old body can do. Clearly, some compromises will have to be made on both parts - but thankfully, I get too easily fatigued to work out such things so ignore them.
I have also found that, whilst I ponder the point of me waking up each morning, some of the subsequent effects of my condition can be quite amusing, example:
“I was thinking of watching this film, do you think it will be one I can tolerate and enjoy?” Wife’s response “well you seemed OK when you watched it last night!”
There are plenty like that, and I just laugh about them. Why not, nothing else I can do.
I do fully appreciate what you are saying and how you are feeling. It is frustrating, and demoralising and can leave you totally isolated from other people inc friends and family.
My interaction with others is now restricted to my wife, daughters & families, clinicians and any exchange I undertake in forums like this or on Twitter. I’m working on the assumption that my brain is busy using every ounce of energy it can lay its hands on to repair itself as well as the body (I’ve had to have 2 Ferretine Infusions to replace the iron in my body) and consider myself as a more mobile version of me from hospital - in a permenant state of recovery. I learned early on just how much energy is used in thinking, talking, observing, concentrating and eating - and that’s without doing anything physical.
Am I happy with my situation? No, as I tell clinicians, if I’d known this would be the outcome of the surgery, I would’ve waited another month and let my heart bring matters to a terminal conclusion. But that is not the case - I have survived, and I try to make the best of things as a way of honouring all that was done to fix my body and keep me alive. But I have no plans to go under sedation ever again.
I wish you well in trying to find a way that allows you to live with your new persona, and remind you that places like this exist so you can get it all off your chest and realise you’re not alone. I would also ask, how much of how we feel is caused by the societal pressures to be out working all hours we can to contribute to society - whilst knowing we are unable to satisfy that brief? Do what you have to do to look after yourself, and don’t be afraid to ask for help - it’s bad enough doing things on your own with a brain that is on top form, let alone one that isn’t firing on all cylinders.
Don’t think your only 59, Think and stay where your brain is for the best memory’s of your life so far. I’m stuck at being 29/30 years old and that was a while ago when injured where I have a clear year remembering everything perfect. So that’s where I stay because I remember everything clearly from then and before.
Your stuck there it seems. Concentrate and rewire your brain to the best of your ability by taking medication/ vitamins that thins the blood to the brain improves old branches that were dying out.
Our brains just a huge dinky tree at the end of the day.
Start swimming 🏊♂️ Or and cycling 🚴♀️ 🚴♀️. There’s the healthiest exercises. I use rowing machine concept 2. But there quite difficult to start on if no exercise done.
Get an EEG referral because otherwise there 12 hundred knicker. That will show your TBI clearly so I have been told.
ADAPT. Your stuck where you are now. I have many of the problems you have and more with shattered bones as well. Just think of you stroke as Part 2 of your life.
Think what you did in the past you loved and do as a hobby. If it seems like work or not, you can stop whenever you want, so not work. And when bored, start at it again.
To improve blood flow to the brain. Garlic thins blood to reach further inside the brain. (My Surgeon was very impressed how my heart didn’t shut down, that helps the brain the same way), Cinnerazine for dizziness helps sleep but also thins calcium to the brain that blocks up the branches in the brain, so be free branches and garlic get the (RAW or Capsule Garlic 2,000mg with Allison from Holland Barrett in there, you will get more memory back. Omega 3,6,9 from asda £3 & 3 for £7.50 I think are the best strongest at the mo. Improves my concentration a lot. Not forever but certainly for an hour or two on Turbo. And Ginkgo Bilioba for brain health. I used to use Korean Gin-sing but the clash taking both at once.
It’s just Adapting. That is the most important. Anyone asks say I was dead, now I’m not. But everything didn’t come back as fast as it should of. Then talk with bad mobile reception or just walk of saying The End
I just say I’m puddled. Or Fuddled. That’s Effin Puddled.
Or go through a quick body pointing going, shattered, shattered, broke, not working, derelict, puddled, confused, attention span of a 7 year old and yawn saying I’m going. Nice to see you, hope to see you again, not, have a good time, don’t do what I wouldn’t do. Have fun.
This is stuck in my brain before so managed to get it out without thinking.
After my coma I owed everyone £50. Quite convenient seeing I couldn’t remember.
Good luck. Have fun. Use the Mrs as your brain, and keep a paper pad on you. Because she will conveniently forget some things. She will say no, but she will. 🤯
Get that brain rewired. I did and found and still find I New about things I never new I New. And others I didn’t know I New and didn’t knows nuttin
Thanks again everyone, Totally the wrong words to say 'glad I'm not the only one' as it would be better if no-one had issues. But you know what I mean.
I've asked for Occ Health to come into work to see if they can recommend anything, my train of thought is if I ask I'm just moaning, but if someone else says it I'm just doing as I'm told.
I know what I want them to say and I know what I don't want them to say but we will see, I've asked if they have someone who knows about TBI because we know that we are 'special'.
Got the doctors appointment next Tuesday so we'll see what happens there too.
Thanks everyone, hearing that 2 years isn't a long time when you've bashed your noggin is reasuring and has eased the pressure I've put on myself a little.
2 years down the line is a tough time, I remember it clearly and sorry to start with a disagreement but I doubt covid had anything to do with the lack of information you were given prior to release from hospital. I'm afraid that's pretty standard for brain injuries. Or was in the past, my accident was 23 years ago, and generally from other people's comments still seems quite a common issue even now. It is good that you have joined us here as I imagine this will shed some light on the issues you currently have and make them feel immediately less unique than you perhaps first feared. I remember I feared that I was the only person on the planet with these problems at first, and by at first I mean probably for at least a year possibly 2.
By the way, congratulations on coming to the realisation that nowadays you are different to who you were before, that took me probably 5 or 6 years to even start considering. Who you are now though is not completely different to who you were before, it's just a few differences, and after a while, and I mean a while, you will come to accept these changes and in lots of ways improve upon them. It's a day by day thing, that's the hardest part to accept but again you will get better at managing that too, with time.
I found my clinical psychologist most useful, but I didn't see him until after about 3 years. I would also recommend speaking with others on this site and finding out ways you can improve things as there are lots of ways you can improve or deal with issues related to brain injuries. And ultimately, try and find ways to do things yourself. Sounds weird but self therapy is definitely recommended on this trip. Good luck.
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18 months post brain haemorrhage and feeling terrified most of the time.
Do you feel like your having to forget the old you
Light At The End Of The Tunnel
