Hi all.
Has anyone ever come across someone with a brain injury where the effected person does not realise what's wrong with them? Have noticed a lot of people on here who have BI's or care for someone with one, all seem to realise what is wrong with them. kmowing the issue seems to be the first step in finding ways around how to live with a BI. My mum doesn't know what's wrong with her as she has no short term memory. years later she still doesn't realise.
Hi lilly,
In answer to your question about knowing what effects a bi has on can depend how long ago it was.
The main problem is first accepting what has happened until this knowing how you are effected will be hard to accept.
once you accept you have changed and what problems you have is the start to realising you have limitations or problems.
It seems the last person to get this is the one suffering the bi.
This process can take varied amounts of time and depends on the individual.
Basically without acceptance there seens to be no realisation of effects of a bi.
In my case it took a couple of years to start accepting how I was effected. If I am truly honest it took several more before I accepted how fully I had changed.
I dont know if this helps any or is more confusing.
Hope it does help Pax
Thanks pax. It will be 12 years in November since my mums injury. I'm not sure she will ever know what's happened to her. Trying to find if anyone else knows of anyone like this. Unless she could know something but has been pretending not to this whole time?
Maybe she does know the effects but finds it hard to admit them to you. Not intentionally lieing but just that not admitting them makes them less real.
It nay sound strange but to a less degree I still do to this day. Even knowing I do it does not stop me "pretending " theres nothing wrong with me.
Also I will put on a sort of " I am ok " act when out. I do this for my benefit and nobody elses. Its a sort of copeing strategy I have.
This may be the wrong thing to do but it helps me .
All the best Pax
It's possible...a 12 year facade perhaps. So hard to know! Thank you for your comments pax x
12 years is possible. As I have said my bi was 16 years ago. Without putting on a front of sorts I dont think I could function fully.
It is hard to let people in for fear of judgement even though you know deep down they wouldnt judge.
Plus the feeling of addmiting your faults is never easy even without a bi.
Showing that theres a way of workin with and around any faults is a sneaky way of facing up to problems. Thid was done to me and I hate to admit it worked.
Keep plugging away Pax.
Hi Lilly
Yes, the brain injury itself can take away the ability to recognise anything is wrong. This is what happened in my case.
I've written about it all in a blog
medium.com/@realashjones/li...
Hi Ash
Thank you for putting the link to your blog again. You have had a difficult journey from the point of your bi and as you explain our bi affects every aspect of our lives and when you don't have the appeciation of why you are suddenly faced with all these difficulties when you didn't before it makes life very confusing and incomprehensible. I think I read the first bit of your blog a while back, but you hadn't completed it then, so it was helpful to be reminded about it and this time I have read it all. I can very much identify with the confusion caused by not having a bi diagnosis and for me, with there being not much in the way of bi services in my area, I ended up in specialties that don't understand bi and brush it all aside and explain everything as depression. That you for sharing what happened to you in a very frank, open and now with understanding account.
Thank you ash. I hope you are now on the road to recovery, you have been through so much. We had same thing with my mum not being seen by right ppl. Because it was a suicide attempt she was sectioned and in a mental ward for 6 months after while all of us family were confused at her new strange behaviour. Had no idea it was brain injury but maybe still the depression! Although the depression was totally gone by that point ....so we're most other emotions x
Hi I Lilly
I did meet a man at my local Headway meetin who was unaware of his BI. He had a heart attack with lack of oxygen to his brain, thus causing a BI. He had no recollection of his heart attack, and the result of hospital stay or rehab. His wife would bring him to the Headway meeting and sometimes willing and sometimes not ! He was unaware of why he was there, and by talking to him he mentioned nothing of his BI, the loss of his job. He had issues, but did not talk of the diffculties of them unlike the rest of the group. He had lost his filter switch, but that often occurs in BI and It I have episodes of it.
I am not sure this helps you.
Take care
This actually sounds a lot like her. To me the very notion that there are people out there who have a BI but can still use their initiative to decide to join an online forum, get onto/into it, write and answer posts is utterly amazing! She can't do the simplest of tasks without forgetting what she's doing such as making a cup of tea. We quite often end up with what we call "cofftea" where she's started making one thing and ended with another. and we only get that with A LOT of persuasion!
Lily, like your Mum, I have no short term memory. For the first couple of years I was terrified. I had no idea what had happened, what was happening but I knew something was wrong and the world was a very scary place.
Over time I have developed strategies to deal with the basic stuff but for the most part I drift through life in my own little bubble... blissfully unaware of all sorts of issues...
On one level I do know I have a BI. I have seen the scans and have the accident report and medical reports... but it is very unreal and I generally do not connect the facts to my every day life
It is hard to explain but every so often I have these awful crushing moments of reality when the full reality of my life hits me and it hurts so much I can't breathe ...but then it passes and its business as usual in my bubble.
I find it hard to understand how/why I could know things one minute but not remember them minutes later. It puzzles me that I can sometimes 'know' something but not actually know how I know it. ..and of course this is all further confused by false memories. It is hard when you cannot even trust the things you believe you know to be true.
Living in the here and now is actually more exhausting than you might think. Not having a frame of reference on which to hang everyday things makes it hard work navigating each day.
When aware of them I would try very hard to hide my struggles. I was lucky enough to get a place on a memory programme and that helped tremendously with certain aspects. ...but its not just about forgetting to take pills or attend appointments or even to eat, sleep, get out of bed and get dressed... forgetting that you will/do not remember that is the hardest part.
Later I will see this post and I will read it and it will not register that I wrote it... even when see my name attached to the post and it is clear that I did wrote it, it will read like the words of someone else...
Ah BI, the gift that keeps on giving.
To know that something was wrong with you, even if you didn't know what, was vital to you learning to live with your BI. It sounds so scary, I really feel for you and everyone else on here with BI's xxx . I guess in my mums case perhaps ignorance is bliss? She's never questioned what's wrong with her. In every Drs appointment she always thinks she has a cold! " I'll be alright tomorrow" one of her sayings
Hi lilly
We all have different levels of awareness with or without a bi but the location of the injury can make a massive difference to awareness and to the ability to adapt to the changes.
Perhaps getting in touch with the headway helpline would help as they have much more experience of different types of injury than we do.
Lovenhugs
Xoxo
I was in a really bad head on car crash with crates of stock hitting the back of my head and neck and i gradually became very giddy off balence confused anxious etc, many visits to doctors, hospitals etc , had a bad doctor who put me on different antidepressenats, and let me and my family believe i was mentaly ill, so i was to frightened to discuss my symptoms, problems and feelings with anyone as the doctor kept threatening to put me in a mental hospital, then i had the brain haemorage, the anyerism caused by the previous accident, and was taken off medication. came home, no explanation of how this would change me, tried to muddle on for years before finaly finding headway and realizing this was the result of brain injury not mental illness so i feel for your mother, she must have been so frightened, maybe like me she was afraid she would be taken away ? and she just tried to get on with life, unaware as i was, that she was damaged , as best she could ? I had no support or sympathy from my family, they just thought i was mental, i just tried to carry on cooking cleaning etc but inside i was screaming, i knew i was in such pain and that there was something badly wrong with me but nowone cared or would listen to me so in the end i just stopped talking
Gosh, there seems to be such a massive grey area in the medical profession about brain injury. So many people (too many people) on this forum have commented on how no one warned them on leaving hospital care that they might have a brain injury and what they might expect.
Ladyhawk, that is so sad that you've had no support from your family, it sounds like you have been through such a massive ordeal. I hope that you are finally finding helpful support on here and with headway. Keep talking to people, it really helps.
Xx
Hi Lilly,
Hope this info is useful : en.wikipedia.org/wiki/Anoso...
I have a friend with Alzheimers. Sometimes, with prompting he remembers that he has a memory problem, other times seems unaware. On our last visit to memory clinic when the specialist asked him how long he had had this problem of forgetting things he replied ' It's not a problem for me, but seems to be for other people'.
He also has some paranoia and delusions, regarding neighbours breaking in and taking items, which ultimately he has moved/hidden himself but does not remember. The brain tries to account for this gap in knowledge by false belief, blaming someone else.
He is still able to live alone at home with carers 3 times a day to prompt him to take medication and general welfare check, meals on wheels ( as he has lost the ability to sequence making a meal ) and some help from us.
What professional help has your Mum been given ? x
Hi Lilly,
What a fantastic post.
My consultant said to me after my accident that the surest sign I had a brain injury is that I didn't think anything was wrong. Ok the CT scans showed the bleeds and so did the second CT scan but I thought I was right as rain and wanted to go straight back to the track and carry on riding, Moto Cross accident. I was out cold for 4.08 minutes and according to the medics and the doctors in the hospital that was a long time. Brain shut down for this sort of time is dangerous and is necessary to survive. I didn't recall a single moment until I came to in my hospital bed...worrying but true.
The last person to realise anything was drastically wrong was me and that was a good 4 weeks after the accident and then another 6 weeks after that. It was only when I started to chat to others on here that I realised what had happened and why. So I'm sure if I had carried on thinking I was fine I would still be in the madness now of deluding myself that nothing was wrong.
So pleased we all have this forum here to help and the headway charity. I really do hope your mum gets well. XX
N
I'm a weird one, but, I was 'before', that's nothing new. I know I have a Brain Injury, because there's a whacking great scar on my scalp, where they went in with the bone-saw for the emergency operation, and another, smaller scar in an area we don't talk about in mixed company, where they guided in the wires, to seal the ruptured aneurysm.
I'm not sure that anyone has really spoken directly to me about the extent of my Brain Injury, not while I've been lucid, anyway, my Consultant says he did speak to me several times on the ward, but I have no recollection, apart from a handsome young man saying "You're far too well to be in here!", and me thinking that meant I could go home. (With wires, cables, and tubes coming out of various bits of me.)
Yesterday, I discovered that, a week or so after discharge from hospital, I set up a direct debit for the husband's car tax to come out of my bank, I have absolutely no recollection of doing that, but I know I must have managed to tax his car and bike during the post-discharge fog, because he hasn't had a knock from the boys in blue.
So, I'm aware I have a Brain Injury, I just don't know the extent of it, I've just written a rambling blog about 'Grey areas and grey matter', to try to process it. I was in absolute denial when I came out of the hospital, something had gone wrong in my brain, but they'd 'fixed' it, and I was going to have two weeks off work, for the scab to fall off, then everything would be fine. DELUDED.
My major issue all along has been the communication, or lack thereof, we can go round the houses until we wear down the ground into a moat, about how everyone heals differently, and it depends where in the brain the injury was, but lots of us are still fumbling with is-this-normal. Part of me thinks it might be nice to be oblivious to the injury, rather than this retarded state of what-if anxiety, but, if I didn't know, understand, or accept, I'd be in a worse place, because I was a complete idiot before. I'm still an idiot, just a bit slower.
I thought the same when I first joined the forum but gradually realised that a lot of us and I certainly know in my case not all were aware they were injured.
It wasn't until other issues arose that the tumour was discovered that a lot of things I'd put down to 'silly mistakes' or just getting 'old age forgetfullness'
hearing about other peoples head injury recovery
Hypoxic brain injury 
COA - children of alcoholism 
Brain injury card
