Hey everyone!
I suffered a traumatic brain injury in 2017 and I would just like to know if other people with one struggle with just being quite nasty a lot of the time without even realising they are doing it until maybe after? And breaking down relationships because of this with friends, family members or partners?
I also have a problem which involves me interfering in matters that apparently should have none of my concern
Thanks so much! Keep safe all
I’ve not suffered with that - but I am more emotional and have a tendency to get tearful far more easily than before. I don’t know if that was a consequence of the injury itself, or the subsequence medical errors that led to my PTSD.
I had a lot of negative side effects of medication - are you taking anything for the injury?
Just anti depressants now
Hi Josie, yeah that is really common, it is generally due to a loss of empathy that often comes with a BI and also being permanantly wound up and unable to settle and relax due to the PTSD element of it, I put some info on PTSD and BIs into a website which you may find useful, this is the link braininjuryftp.com
all the best, it does improve!
Thankyou so much! Is there anything I can do to help it improve quicker?
I found it really helpful to learn why you aren't able to relax and on edge the whole time, all that information is on the website, and then just finding ways to relax and over a month or so you will notice a difference, I found meditation really helpful but difficult at first.
Yes I've had my outbursts since surgery 5 years ago! I believe a lot of them were due to the toxic relationship I was in but I was easily rattled and did snap a bit Been with my current girlfriend over two years now and have never raised my voice or had an argument. Sometimes environment can make all the difference! Not for everyone but for me it works at the moment 
Oh that is brilliant I and so happy for you! My current boyfriend and I argue a lot and he blames the way he talks to me on how I talk to him and I have tried to say I have a brain injury I take things differently and his reply has been so what I have to walk on egg shells around you for the rest of my life!? Everyone seems to say to me about walking on egg shells and how they won’t or shouldn’t have to like my current only house mate in supported living in a shared house
It’s difficult because frankly -they don’t understand. Have you downloaded the Headway leaflets on the site and given to family friends etc? I did for some
And it made them realise once they had read the fact sheet about TBI and recovery here’s one drive.google.com/file/d/0B3...
Thankyou! Yeah but they say they understand but I’m like you don’t though not properly! Am I right in feeing that way? My mum has done so much research into brain injury over the time but I feel it was more so when it just happened maybe not what it’s like to live with one. Also since my accident and waking u from my induced coma I just haven’t ever taken to my little brother who was 6 at the time of when it happened he’s 9 now. He just irritates me so much and before my accident I adored him and I have sworn at him a lot of times since my injury and just get so angry towards him and my mum can’t understand what’s changed and I’ve said I have a brain injury now but she still doesn’t quite understand
Read and share the information and help them understand how your brain is working to repair itself and could take years! I had a moment last night (very positive). The guy who attacked me and gave me TBI is a two bit actor who appeared on a programme last night. I just laughed at him and something happened in my head . Some sort of release! And I’ve not slept since! Sorry! That must make me sound mad! Executive dysfunction 😂
Yhyh that sounds like it was a very positive release and maybe kind of acceptance?
The link just takes me to managing fatigue?
All help sheets here headway.org.uk/media/7669/t...
So I don’t know what to do about things a lot of the time as I can’t make strong decisions either without changing my mind
You’re not alone! Also if I have a plan and have to deviate it freaks me out and I just see red , get angry anxious etc. Well I used to when I was with the wrong one. My partner now is amazing. It helps that she is a carer for autistic adults so “gets “ me ! A wonderful person she is x
That’s strange because my boyfriends brother is severely autistic so you’d think he’d have some kind of understanding that shows
Forgot to say yoga, mindfulness, meditation, exercise - the usual shit all works to a degree!
Hi Joisemay
I am sometimes like that, especially if I’m fatigued but sometimes for no reason. I think it can be because I have so much going on in/with/because of my head that I become snappy without realising. And I often don’t realise until I see other people’s reaction. And even then I can feel misunderstood.
I’m lucky that I haven’t lost relationships because of it but I’ve definitely ruined the mood on occasion and I have to take responsibility for that. I am much less tolerant of others and I realise that that’s probably my issue rather than theirs - and, as a result, I’m nowhere near as sociable as I was before my injury, and I’m happy with that.
Be kind to yourself
Best wishes
F x
Hello there!
I often feel misunderstood 
And I have said before to my mum especially when she doesn’t seem to understand ‘ you don’t know what it is like for me as luckily for you you don’t have a brain injury!’ And she has told me how that has hurt her..
I feel as though the only thing I am good at is upsetting people ie my mum or boyfriend as I don’t have many friends
I have been told I start things with good intentions but then it just goes nasty.
I don’t know what to do because it seriously feels out of my control
Oh Josie I do feel for you. I am sure that you are good at many things - and seeking help on here is a sign of that.
Can you take a step back and see if there is a pattern for when things go wrong? For example, for me, I definitely get overloaded by too many stimuli (and this is incredibly common), so I cannot listen to music unless I’m on my own and even then I have to be very careful not to overdo it. Because if I have overloaded myself then I am incredibly short tempered.
With your mum, maybe on a good day you could sit down calmly and explain how it is for you. Maybe you’ve tried that and it’s gone wrong? Maybe sit down by yourself and write it out first so that you can get your thoughts straight.
My family became whey good at letting me know when I am getting fatigued because they recognised the signs before I did. And that’s really helped me to stop trying to achieve as much as I can at everyone’s expense.
I have to go now but am happy to try and help.
You will find a way
With love
F x
hi josiemay17, Been trying to write a response to your post all day...I have suffered the whole gambit of emotional upheaval because of the BI,I have lost connection with a fair few friends and relations including my twin, my sister and now recently my beloved teenage daughter.
I only just realised, that it is my lack of empathy at the centre of it, then theres the inability to understand/comprehaend and communicate that has led to so much sadness around my post BI life.
I had blamed anger before and have worked hard on the things that trigger me, but alas its still there despite all the strategies and tools.
Havent seen my precious daughter in over six months, she refuses to speak to me either in person or facetime, we do text now which is something but I try to keep it light hearted. I told her off for doing something really bad and that it was my job to protect her, She went back to her Mothers and has stayed there ever since (Her mother and I are now only communicating through solicitors). I guess she has had to cope with her quick to anger Father for too long and that was the last straw.
The thing is...I am deeply affected by this, it hurts me more than I can accept but...Also (in my weird BI brain) I can equally feel like the burden has been lifted and that I don't miss the drama that she would constantly bring to the house (13-14 year girls eh) so in a way I am glad!!, but then that dichotomy only ends with more sadness about how hollow I am now.
Dont like to leave on negative points, so I am still the father of a 9 year old boy and we are like peas in a pod and always learning and having fun together, because of the Covid-19 we are splitting the time between the two households at 2-3 weeks at a time. and that's hard but I enjoy missing him and have made many plans for our 2-3 weeks together.
we got to keep sharing to keep trying to understand ourselves, and I thank you all for that x
I’d say that lack of empathy and understandably being self-centred is quite common, I’m much less than I used to in the first few years, though I still lack well the softer edges, I do lack empathy and have a temper and don’t get jokes!
It’s often very hard to get insight into this, I’m aware that I’m amusing apparently I’m somewhat random? But I don’t understand why. In the same way random people apparently know me and I should know them, who knew!
Hi Josiemay, I'm sorry to hear about your injury and that you're still struggling.
Different parts of the brain control different parts of the body (mental and physical). IFor example in stroke patients, the symptoms can be very different depending on which part of the brain is affected/where the bleed was. One patient might have purely speech difficulties. Another patient might have difficulties with fatigue and one side of their body affecting their mobility and how/if they are able to use their hand.
Changes to personality, how you react to things and how you deal with things can all be affected. As these changes might be permanent, the best approach would be to be have a proper neuro rehab assessment. This will help to identify any issues/areas of weakness as a result of your brain injury. The next stage would be a rehab plan helping you to come to terms with things/become aware of how you may come across to others and setting your life up in such a way to minimise situations where you are being nasty/interfering. This could also involve your family (Mum and boyfriend?) which would help them to understand how to deal with you/speak to you in a way that doesn't exacerbate the problem.
You don't have to deal with this on your own. There are lots of great services within the NHS who should be able to support you through. Under normal circumstances (and not lockdown!), I would suggest making an appointment with your GP and asking for a referral to a neuro rehab team (for the issues you are describing.)
Whereabouts in the country are you?
South west London! I have had that neuro assessment done and I was on a rehab programme for quite a while At Queen Mary’s hospital in Roehampton where we did group rehab programmes but I don’t really feel I benefited from them too much apart from knowing I need to give myself more time!
Not a million miles from me but not close enough for us to help you! (Rehab team here.)
How long have you been having difficulties? It might be that it wasn't a significant problem when you were undergoing rehab as you probably had other issues going on that you were concentrating on.
You can asked to be referred again. There might be another service which would suit your needs now. I work in a team that is a long term service. Some of the people have been with us for years and we see them on a very occasional basis.
What's your work situation? Did you manage to return to work after your brain injury?
No I haven’t returned to work in the assessment that was carried out they said there was no way I could but they signed me off in December so I’m thinking what now? Lol
What were the reasons they gave for you not returning to work?
How long have you been having your current difficulties (with relationships)?
Since my accident really which was 1st Feb 17!
From what I can remember it is because I take things the wrong way and can come across the wrong way such as being rude I can’t remember what else
Okay, do you have any ongoing outside support (from NHS or a charity)?
Also, what are you doing with your time now? Do you have any hobbies or are you volunteering at all?
Not anymore from nhs no
Not a lot before lockdown tbh so my life hasn’t changed a lot I just don’t have the freedom now! I have volunteered at a charity shop then I left there and applied independently to volunteer at the shotinn start children’s hospice I was there for a while but then I had two operations spaced apart and I was advised not to go back til I was fully healed because of risk of infection as it was on my eye so I told them I wouldn’t return because I couldn’t guarantee when I’d be able to come back
I would suggest that you go and see your GP after lockdown to see if there is a service that would be able to support you longer term. I'd also speak to Headway who may also be able to help.
I'd say it's really important that you have a good support network around you. People that understand your issues and help you to overcome them in a positive way.
Also, it's really important that you are involved in activities that are meaningful to you. A form of paid work (in your case possibly a new direction), volunteering, hobbies, exercise, seeing friends, etc. If you can create structure and routine for your week this will really help you and you may find that you are better able to cope with things/your relationships flow a bit more smoothly.
The great thing is, you are aware of difficulties. Perhaps it might be worth you starting to keep a diary of your activities and what's happening on an emotional level. You might see some patterns. Perhaps you are a bit more argumentative when you're tired? Fatigue is a common after effect of brain injury. Maybe you need to schedule a few rest periods during the day.
These are all ideas to get you thinking. Obviously, it's very difficult during lockdown but having a schedule and routine will help you to manage (and everyone in fact!).
I'm now the ex partner of a TBI survivor. His behaviour and anger intensified after the injury, he eventually was physically violent hence now ex.
Definitely explore counselling if you haven't already
Oh wow bless you! xx
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