Hello everybody, it is a while since I last whinged about things but you can't keep all that pressure inside forever or you will burst so here goes. My wife recently expressed worries that I work too hard or for too long hours considering both my age (49) and the fact that I still have residual problems following a brain injury I got from a severe fall in 1999. Since the accident I was only temporarily off work sick and briefly unemployed for a total period of about a year and a half. Apart from that I have been working more or less full time or studying at university full time since the accident.
However, I do have continuous residual problems which I wish to share with you all: Generally speaking Iam quite a confident person when I am doing something I know how to do at work ie. Working but this confidence disintegrates as soon as I place myself in a different environment. By different environment I do not mean something dangerous but sadly something as commonplace as chatting sociably with colleagues. This is something I tend to avoid at all costs. I am also terrible at promoting myself and find it excruciatingly difficult to say anything positive about myself in situations such as interviews with new potential clients. It is for this reason that I work for a lower salary than perhaps I am entitled to and can easily be persuaded into taking a lesser amount and longer hours. After work it takes me a lot longer than it did prior to my brain injury to relax again. I see this period of relaxation as a period of almost decompression as I try and rid myself of the stress in my body. On occasion I make personal statements which can come across as quite arrogant but I hate arrogance and do not believe I am better than everybody else but quite the opposite. I occasionally laugh in quite an unsettling way, it sounds quite threatening believe it or not. After hearing it on a mobile video I made I became quite scared of laughter and tried my best to avoid doing it.
I could go on but wondered if anybody else out there has similar problems and suggestions for improvement? I am, as always, open to ideas.
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Pedal2
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I think maybe part of it might be sensory overload, I also can't be in a unfamiliar environment for too long because my brain will not be able to cope with it and then I loose my confidence and need to get back to a familiar environment. I just assumed that it's because my brain had to work so much harder to filter out what's not important and try to process what is important whilst I still had new sights and sounds coming at me, not sure about the other situations tho sorry.
Yes I believe it is partly sensory overload but also the fact that work is kind of scripted, you know what subject you are talking about so it is like you are just reading from a script whereas social conversation comes without a script. That should be a positive thing, it is a positive thing, an open field to express your feelings etc. But for me that freedom is suffocating and sadly fills me with dread simply because I have no idea what to say.
Hello Pedal, I think sometimes it can be harder to follow conversation after a brain injury, because of the slowing up effects of the injury, it's hard to find suitable responses quickly - I can imagine that would be difficult in an interview situation for example - do try taking your time when replying to help your brain to catch up with yourself. People appreciate you taking time to think about what's been said or asked.
I find conversation drains my energy battery superfast sometimes. I've always been socially confident - but now I'm learning to be a good listener. ( It's good you've spotted that your laughter seems inappropriate by the way).
My strategy is always to ask people something about themselves - and then listen as carefully as possible to what they are saying - everyone likes talking about themselves! Remember that in a group it's usually the person that speaks least that people respect the most.
The last thing to remember is that after a brain injury we are prone to repeated bouts of depression and anxiety, and that what you might need is some temporary or otherwise help with anxiety - so I would be inclined to talk to your GP about a referral to talking therapy - and also don't be afraid to try antidepressants if they are prescribed ( start on lower doses and slowly increase after a BI)
I found Duloxetine very helpful indeed for anxiety, despite its bad press on the web, and I also eventually came off it with no bad effects afterwards as well. (It seems antidepressants are an area where Googling isn't very helpful!)
Just thought - Have you ever had neuropsychology testing? A referral to a neuropsychologist might be useful to point out what your brain now finds difficult, and to work on some strategies to handle those areas.
Thank you very much painting-girl for such a detailed response. I have to confess that I rarely ask people about themselves so from now on I will start asking people how they are as an introductory part to a conversation. Although like you I also find conversation a little draining which seems ridiculous as friendly conversation should not feel like the mental equivalent of climbing over a skyscraper without a rope. With more practice maybe it gets easier.
I did see a neurologist and a clinical psychologists but not a neuropsychlogist and anyway that was way back in the early years. I have to add that with all due respect I do not intend on revisiting them now. The reason for this is I am very much into self help and have been for a long time as there is no miracle cure and I thought I better get on with my life without hospital visits about 7 years post injury. I also dropped antidepressants and sleeping tablets almost immediately after they were prescribed to me by some GP's because they actually made me feel worse. Difficult patient aren't I? I am taking the radical drug free and doctor free approach to recovery with my residual problems. I believe psychologists neurologists and neuropsychologists are busy enough already with patients with a greater need than myself, like I had myself for far too long immediately post injury. Thank you very much though for your advice on speaking to and with people socially, I will put it into effect next week.
Think up a few 'open questions' to ask people to keep up your sleeve - nothing that has a one word answer. How, why, what, were, or when questions are useful e.g ' How were things with you during lockdown - what did you do?'
We lose self awareness after a brain injury, so another person is good to have onside to reflect back what we're actually like. Other people tend to notice stuff we don't.
Have you read the book by Jodi Mardula and Frances Vaughan called Mindfulness and Stroke ? Lots of useful insights - particularly by Frances Vaughan the neuropsychologist.
Hi Pedal2,I find in general I do a lot better in familiar circumstances. It makes sense as the brain pathways are well trodden. In my case this even applies to surroundings - if I go somewhere I have not been before I may get tremors or even be no longer be able to walk. It also takes me awhile to be able to get used to talking to new people, as I have to get used to the cadence of their voice and their speech patterns.
What I tend to do is identify something to tackle, and then find something to do that challenges the brain, but not too much. For example, in the beginning when people talked, except my Mom, I just wanted to scream 'For x sakes shut up!' So, I listened to my Mom a lot on the phone, then went from there to listening to the nightly sports news on the radio - I am not a sports fan, but the two announcers were both men with low voices, there was no music, and they said the same things over and over again.
From here I started watching black and white movies, mostly from WWII era as there was very little music, then to newer ones with the saturation turned down to get rid of the colour, then colour up. Then, started doing a language learning ap on and off.
I also started doing pen palling as I realized I had no idea what to talk to people about, but penpals do. I looked up topics in the web and could borrow from what my pen pals said, This might help you learn social chat better... with penpals you get more time to think about your answer and if you use a word processor you can talk to get it to write, then read and edit what you say. It helps your brain build pathways, (Can use email or snail mailm globalpenfriends does a pretty good job of weeding out scammers and will notify you if you have been in contact with someone questionable.)
I find it really hard to know what to say sometumes as I really have trouble keeping up on some level, knowing what to say etc. I have found having a few phrases to say really helps, as does letting the other people do most of the talking.
I also found doing the other language study helped my speach quite a bit, as you have you really listen and then change how you speak. I wonder if it might help you develop a new laugh? Buikding flexible sound brain pathways and helping excercise your physical speaking parts. You could use something like Record Me Now online to record yourself laughing and then play with it and listen and see if you can learn one you are happier with... you never know. (I have found learning a new language has also helped me be able to have wordz more accessible in conversation... because of the practice in speaking and listening?)
There likely will be training videos out there on how to deal with clients etc and watch them and practice with family members and friends. Check youtube, your library. Or explore your field and know your niche well... and do not undervalue what you can do. This may allow you to work less and be appreciated more.
I have found, with all the time I have had to observe, which has been plenty - every single solitary person out there is so quirky in some sense we are all basically nuts. I said this to my neuropsych once and he said 'you are not wrong'.
There are also brain games off all sorts, for things like helping you recognize people's emotions by looking at their faces, etc. Even though you are not wanting to see professionals Headway may be able to gelp you find self help resources, or doing a web search looking at what professionals offer may help you find tools they use... often there are similar for home use.
I would also suggest doing some research into to job payment levels, There is everything on the web , there must be some, somewhere - maybe even apporaching a head hunter or other professional for input may help. I may not have that quite right, but there will be people who know. (Remeber the other people ar your firm making more money are also quirky in some ways and others make allowances.)
Really, being likeable is helpful in all situatuons, so perhaps working on the conversational skills etc will get you the most chocolate ?
I would also suggest something like HeartMath to learn to put yourself in a state where your heart rate and breathing match - it makes you feel calm... and itwill help your brain work...the other thing is when you are in that state others will also uncounciously match that state - it is something called entrainment - we all do it unconsiously. If people feel better when they are around you, or at leadt feel calm - they will like you more, and that will help you.
Well, just some random ideas that may help twig something new for your self directed therapy path.
Being able to notice what is working for you and not, and being willing to take action, is huge. You have broad shoulders, Pedal2.
Thank you very much for your response Leaf100, a very thorough list of ideas and definitely something I intend to look further into. I also like your comments about your opinion regarding everybody being kind of nuts as this is a conclusion I drew post brain injury through working on acute wards with people with mental health issues. After only a matter of days or perhaps it was weeks I started realising mirror like images in the so called sane part of the world outside the wards with disturbing frequency. On the subject of not wanting to see professionals it is not that I don't want to see them it is more that I did it for years and kind of reached my peak with them and felt it was time to try and "iron out the creases in my personality" from then on myself. A lot of recovery following a brain injury in my opinion is reached individually through continued work on the same things. In the early years it is beneficial to have a soundboard listening and pointing you in the right direction but after a while you want rid of the feeling that you are in some way constantly ill as you want to return to whatever level of normality you can before it's too late. And medicine in my opinion has not made my recovery any better at all so I have only taken antidepressants and sleeping tablets for about 1 week throughout the past 22 years since my accident. I have worked out, like many other brain injured people, my own ways of dealing with problems and have managed to solve some of them. It is a bit of a bitch, excuse my harsh language (although I could easily go harsher), that some of my issues still remain but I bet that is a bitch to many others too. The "Why the f%$k can't I get rid of that or this or them!" Depending on the volume of "untreatable " issues which continue to raise their heads and say "hey, we're still here, you're doing well but you haven't got rid of us yet so don't get too cocky mister!" I guess sometimes you have to face the fact that somethings are going to stick around until the end and you have to think of ways to minimise their impact on your every day life. They are like gremlins, they disappear for long periods of time and then reappear just when you weren't expecting them and set out screwing things up just like the gremlins did in the movie. Same kind of mentality, petty playful stuff at first but taken to a higher and unacceptable level for society. I should get used to apologising afterwards by saying something like "sorry about that, god knows what that was all about the gremlins must have taken control of me again!" Mind you such a declaration would doubtlessly place me on the afore mentioned acute wards in a slightly different position. I am waffling, needless to say if medicine and seeing specialists worked in restoring us all back to who we were prior to brain injury this forum would not need to exist so I am going to take your advice forward and continue in my quest for restoring myself. I am pretty certain I will never achieve this but fuck it, I've started so I'll finish that way. Once again thank you very much for your sound advice Leaf100.
For various reasons I too have had to find my own therapy for the most part, and do it at home. I also am unable to take the nedications they usually give - they don't agree, or I get the so called side effects without the desired effect. I have also had to find my own therapies at home. I have had a really good, and kind neuropsych most of the time, mostly because my insurance insists I be monitored. (The therapy I have been able to get from him is limited as I can not do groups, my ability to read is limited but getting better, and I have been having a pretty intense time of one major thing after another, so his goal has been stability...he is pretty realistic about my limitations, while still being very encouraging about my progress.)
Maybe keep a log of activities, wheather, people, etc and see if you can figure out what calls the gremlins out to play. Then maybe you can avoid the water, at least sometimes.
If PTSD is involved then EMDR is really good for some, yes you need a therapist for it, but it is a door to freedom and one of the few things I would pay privately for. Get the paddle based kind, though - these are little things you hold in your hands that buzz. (The other method uses follow the finger method, but since vision is linked to multiple parts of the brain it adds, in my opinion, a whole swamp of poseible issues, that feeling and hearing a light buzz does not. And so, is more likeiy to be doable.) The rewards of EMDR are more than you think, as not just the PTSD symptoms go, it liberates layers of capacity that were being used to manage the PTSD. (It works for small t traumas like recurring thoughts... as well as big T traumas like violence.)
You do have to be mindful what ammunition you give people, so I would advise you not share the gremlin comparison. Better you find your coping strategies and let people think you are working on your stress level or whatever it is they put it down to.
Yes, the brain injury will be there, in your face. The cost of it can be very high. It is an extra level to deal with. We know what it is like to live as a different person. It is a blessing, as well as a curse.
Maybe it is more empowering to think you are making yourself the best version of you you can be, rather than trying to restore an old version of you - in some ways, the new you may be better. ( The old version wouod be different now anyway,we all do learn and change as time goes on - some, more than others - and I suspect in your case the drive for self actualization was always there in some form . ) I know for me, very occassionally I see something and think 'the old me would have been entirely blind to this' ... and I am really glad I am not.
One that bugs me a lot is the penny dropping later , long past time to take any action on it. The old me processed fast. (Though, it was also likely blinder to when I did miss the point.)
Hello Leaf100, you sound like you have dysphasia if I have understood correctly. I too had severe dysphasia immediately following my fall and although recovery is slow, I assure you with continued effort it does get better. Like all things connected with recovery it often feels like taking one step forward and ten steps back in the world of language. It took me months to be able to read the tabloid newspapers and about the same time to write connected sentences that made at least a little sense. I still have language problems on occasion where I cannot remember a word for something or have a mental block on how to spell it. Often with simple words to make it even more embarrassing but I guess that is the gremlins messing with me again.
On the subject of the gremlins, I do not share these ideas with people at work or with people outside work. Worry not, that would be insane. My medical history is a closely guarded secret as I have found the side effects of revealing brain injury to people can be far more severe than the side effects of medication for brain injuries. It is to be avoided at all costs in my opinion and would lead to even more work related problems for me anyway.
Finally you are right, it is impossible to return to your old self and I too have found certain aspects of my personality have improved with this new model. It is not all sad violin in the background with regards to my personality. However, I am still fighting the persistent issues, the gremlins so to speak, and will continue to fight them even it is a fight I cannot win. I can't just give in now after 22 years.
Look after yourself Leaf100. Don't try too hard to recover. Give yourself a break sometimes. That's what I wish someone had said to me in the early days or years. Life is for living, it can't be working on your recovery 24/7, so don't forget to take a well earned break on occasion or you will wear yourself out.
Good advice, Pedal2, though I find the necessities usually put me over the line - right now life is intense and I can not avoid that.
You may be right about the dysphagia, I couldn't look at paper without landing on the floor with my head in a bucket in the earlier days, and other than the pcs label I do not remember much about what was thrown at me.
I tried some physio and vestibular therapy, and some nuero feedback, and found the people doing the therapy all ran out of cards... past that I tried a couple of other times, but found the therapy so triggering I couldn't get anything out of it - or the things they suggested I do were so far beyond me they were not reachable. There is a lack of bi literate people where I live, and the ones that are only work in group programs, so they really do not understand people who can not tolerate that environment.
So, having a good problem solving brain I went for doing my own therapy, best I can.
Hello Leaf 100, I remember things being intense for at least 6 or 7 years, the first 3 in particular for me were the most intense in nature. I am guessing from your final comment that you had a brain injury 12 years ago, am I right to assume that? You have probably already worked out that the daily reminder of your brain injury is inescapable and that you will always have to do things a little differently to other people on a daily basis . Hopefully the intensity will decrease over time but then you may be faced with the problem of taking things too easy and not doing things according to your own self made schedule. It's like having a full time job on top of what ever else you are trying to achieve on a daily basis. Please however take it easy sometimes, find something you enjoy doing which relaxes you - listen to music, paint, draw, exercise, go for a walk, go to the park - whatever it is try and include it in your daily schedule as a necessity.
It is a good idea to let the brain lead the way in terms of resting and doing, and that is a principle I also recommend. I do structure my day somewhat based on when my brain can manage what.
I have not reached the point where 'doing' of any sort is relaxing and enjoyable as opposed to taking effort, being taxing, and in some cases even risky (mobility issues when outside the house - it is complicated). Everything I do still feels like therapy.
One thing I have on my plate is care of an elderly relative, which is what it is. (I would not change this even if it were possible - which is good, because it is not possible.) This won't last forever. I have no way of knowing if the constant overload sensations will go then - I somehow doubt it. And, it really does not matter. I have no idea what things will be like after they pass, and I am not looking forward to that. We are very close. And, since doing things is therapy anyway, this is just differently directed therapy than I might have otherwise picked. I am glad for many things about it, though I am not able to advocate for them as well as I would without a bi, and that is a hard one to take.
I do take it easy sometimes and pace things if I can - I put my feet up in a quiet room when I can, and try to spread appointments so we do not get too worn out, etc
Yes, I am over the 12 year mark. And, I see a lot of people wth fresher injuries can do a lot more things than I can do.... and I am also aware of the folks in hospital who would be overjoyed to be merely more or less housebound. (Though there are a few places I can go now,.. I have a process I have to go through with a new place, and it may or may not work out.) I would love to be able to go for a walk anywhere I wanted to go, for example. That is a tough one, because I used to walk a lot and it was my happy place.
Sorry I made a mistake I had Aphasia immediately following my accident (complete loss of reading and writing skills) which developed with work into Disphasia (loss of parts of language ability but not complete loss).
I remember panicking as I realised I was illiterate but thankfully this did not last very long. However, getting back my ability to read and write without it being a demanding task took years and years of work. I started by writing a daily diary about what I was doing and how I felt. Lots of it was incomprehensible at first and did not really make a great deal of sense but over time it developed really slowly. I then, after a really long time, began checking and proof reading my own work and correcting the multiple errors in it. I even started writing meaningless short stories because my life at the time was spent at home and therefore I had little to write about.
I am reasonably good at writing now but still proof read my work because I still make silly mistakes. On the positive side it is the lack of complete recovery that keeps you on your toes, whereas on the negative side it is the lack of complete recovery which obviously gets a annoying to put it quite mildly. 😄
Hi Pedal. Reading through your post, the responses, and your responses to the responses.
Got the t-shirt, baseball cap, window sticker, and cuddly toy seems to be where you are 22yrs post injury. But yet you still feel like the pressure needs to be released. It is a strength to recognise this, it is a strength to know our failings. The stiff upper lip, is a defence. Someone else is more worthy of help, is an acceptance of our struggles, maybe occasionally an excuse?
Sometimes we don't want help, sometimes the help is not available, sometimes it is not the right help, and sometimes we are not ready for help.
If one aspect of our existence starts to grind at any point, we can address it, sometimes self diagnose, and treat it. But sometimes it is time to hold our hand up, swallow our pride, and ask.........
That is just as well pairofboots, I dropped poetry in my first year at university 😉🤣.
I think, or believe because it makes me feel better, that anyone who has had a brain injury, no matter how long ago, still has issues to tackle on a daily basis. I imagine someone somewhere has even probably written a poem about it. The stiff upper lip in my case and therefore everybody's, again to make me feel better, is a waste of time with brain injuries. Regrettably this is a problem you can't hide under the carpet and forget about. Now I too must stop before I break into song like a character in a musical.
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