Hello team, can I ask if anyone else can identify with this? I've posted before about being a new person since my BI, the old version of me died with my illness. I'm not a completely different person, more like the child of the old me, and I'm growing up into my new self.I've been chatting to my therapist about this idea of being a toddler at the moment, and she agrees. She told me that toddlers explore the world and sometimes throw tantrums, not to be annoying, but because they're overwhelmed.
Last week I went to the hospital for an EEG (they want to check if any microseizures are still happening in my brain). As usual, the instructions for finding where I needed to go were useless and I ended up in a corridor, lost and with no idea where to go. So I started to cry, and ended up sitting on the floor howling. Some hospital folk helped me out (though they struggled to figure out where to go as well!) and I got to my scan. As I sat in the chair being scanned, I nearly started to cry again, but this time with sadness that this is my life now. But then I thought, no, I'm a toddler at the moment who throws tantrums in hospital corridors, but I'm growing up. As each day goes by, I grow into my new self, and the silly tantrum phase will pass.
Have any of you gone through the stages of growing up? And did the tantrums pass?
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PurpleOverlord
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Oh yes!! As the brain rewires u redeveloped! A second growing up is far better than the other option?!! My parents went through it 4 sure!! Am sure my sisters, friend I buried the week before my accident met me at the pearly gates &sent me away?!! Apparently I had a job to do 1st!! Supported mum through dads demise, death. 1 of 4 kids who with bro supported mum with dementia/alzimers!!! Role reversal 4 sure!! Made me grow up reapidly. From £40 a day to go sit with her to actually getting on trains, finding my way home from east Croydon station via bus?!! Best bit is u get the option to select which bits of the old us we want to keep? Make for a nicer new adult!! Are occasional bit by the incurred brain injury? Just smile to spite it!!!! Keep safe as u develope!! New me is 23, preferable to body age of 57!!
absolutely yes.Sat in the middle of the road in London having a melt down in my early recovery months, screamed at my eldest son on the train, stomped out of meetings with friends, cried in shops.....
Oh yes, and after 25 years it still goes on. I'm sure I've learnt and re-learnt many things several times .... not sure that's right because there is probably a cycle: guess - get it right or wrong - learn - use - forget - repeat.
Mostly I think I guess right but things still go wrong, sometimes because the situation is maybe only slightly different, sometimes because the reaction of others is different.
Then there is the tantrum which I try very hard to avoid by letting the disaster that just occurred go. Sometimes it's unavoidable, usually because I get cross at what I perceive is the failure of others. I'm usually right on that as well but I've learnt to ignore and carry on quietly, I prefer a quiet life .... until I forget and re-learn that bit again as well 🤭🤣🥱👍
Some interesting comments. I often find that frustration occurs first thing in the morning, and that is a time when I am most uncompromising.
It is particularly annoying because I am normally correct in my thoughts and analysis:- it is others who have not thought things through correctly or are self centred and selfishly only think about themselves that cause the frustration.
Sometimes it is difficult to bite your lip and say nothing to these idiots but it is less stressful to just ignore them and put this down to their ignorance.
I also find that now I can trust no one because I have been badly let down by so many people.
This even extends to my doctor who booking me a consultant well over a year ago (and said it might take some time for an appointment) was shocked when I told him during a recent consultation that no one had ever contacted me further. Good on him, he said he would now look into this, but surely his systems should have had him chasing on my behalf for the referraal he made something like fifteen months ago? Like I say the trust is gone.
I generally find the day improves and I am better in the afternoon until about 6 pm. I will tire after working and try to socialise or do other things in the evening after 7 pm. Sadly an overactive mind can cause insomnia, although I tend to use exercise to tire me out, which helps.
Does anybody else feel similar? I would be most interested to know that I am not alone?
For me I am most stable in the mornings. As late afternoon approaches, I guess as fatigue gets harder to manage, I get a bit cranky and things like swearing randomly or getting frustrated come out. Generally after dinner I become a bit more soppy or emotional and then eventually I settle for a little while (usually some time alone to reset) and then it’s not long until time for bed.
My insomnia tends to happen in the night when I wake up and can find it hard to get back into proper sleep.
I tend to avoid socialising in the evenings as I still feel embarrassed about how I am sometimes. It is really tiring masking. I’m learning to be kinder to myself and be the new me in front of people, but I have to feel really safe to do that.
Yeah, we are all different and affected in different ways. Thats life.
Thanks for your insight though. I think the combination of your morning person and my later one would make the complete solution ! Haha!
As far as socialising is concerned, I have found new friends who didnt know me before, so it works well and have even come across someone there who is also a BI survivor although you would not know and it took a long time before they admitted it.
Anyway as well as Headway it is somewhere I can escape to and the best thing about it are the very wide ranging conversations we all have there.
I dont bring up my BI for fear of anyone thinking differently of me or taking advantage but it is good and since lockdown ended I have become a well known face there and feel totally accepted.
I do like your being a toddler with tantrums 😁… and definitely the old me died but I think nearly 3 years on since my accident the old me is very much still there with a new very distant emotions ans yes tantrums when pushed to far ..sue x
Yes to changes and it is difficult to cope with changes. Do you have a brain injury card from Headway or Green lanyard with brain injury card? Both have notes on them saying effects it has and been really useful to me. By showing card to people like staff trying to help you they can easily understand your difficulties. As someone who was so independent before asking for help was a struggle but there are amazing people out there who will help.
Hmm definitely less control over my emotions these days, easier to cry or lose my temper - or both. Much easier to think other people are idiots, and be cross and frustrated, or let down and distressed, or being unable to stop eating, or to fall asleep at night. I'm actively working on self control more now - so perhaps I've got past the toddler stage to 4 or 5 years old now?
It occurs to me often that if I feel the negative emotions more strongly then I probably feel the positive emotions more strongly too, like love and joy, or awe and wonder.
A useful strategy for coping with the distress is to use the MBSR (mindfulness based stress reduction) approach and remind myself that 'thoughts are not facts'. Just because I feel in a particular way at that time about someone or something, it doesn't make it real, and if I can think about it that way when facing a meltdown I can ( albeit with some difficulty) step back a little from the spiral of awful thoughts - and then I find that frequently something happens that proves that they were indeed 'just thoughts' and reality isn't as cataclysmic as I first supposed.
I think the analogy of being a toddler at first is a great one actually, thanks!
I suffered my tbi in 2000, a month in an induced coma 6 months in various hospitals. Lost my driving license. Tried to go back to work on limited basis after a DWP doctor asked me 3questions lost benefits. A year before appeal when I was awarded 13 points for long term incapacity?!!! Friends family couldn’t accept the new me. Saw the old me, unable to accept she wasn’t there? Divorced hubby for abandonment. Rehoused by council. Several years to even become aware how different the new me was!! Spent several years developing my character. Became the carer to my parents as they declined supported mum as dad passed after 60+ years of marriage. She then had dementia/alzimers. 4 surviving children only me & older brother were there for her daily. She went into a home run by my sister, had a fall & went into hospital we visited her every day!! I spent all my benefits to cab back & forth as unable to do transport!!! We stayed with her the night she passed. Other bro & sis actually came for an hour!! . No social care for me after!! David took me to memory clinic as apparently social services had no record of me?!! Took part in a research study on tbi several years back which helped me rewire my brain. Still no support from social services!! Was given brochures by memory clinic but not inclined to attend. My social life is coffee with a lady who I met at old day centre before it shut due to finances many years back she now moved away now sit all day on couch. I present more able than I am new life is a challenge! Just SMILE to spite it!!! Good luck
I think that it’s a really good way to describe the aftermath of any brain injury I am now three years in to my recovery journey and am probably in the stroppy teenage years Please be assured that things do improve albeit slowly and in a somewhat fragmented way Talking always helps
Thanks for your post and sharing what your therapist said. The replies are interesting. It has helped me to frame what is happening.
I have enjoyed feeling younger, it has relieved pressure from me and I have been lucky enough to feel the positives of being younger not just the emotional negatives. Life is quite hard but I often do not see it that way. However, I sleep like a baby and have been in a haze of fatigue so have felt even more removed from responsibility, worry and purpose. This brings its own set of problems though because life is not designed for me to live that way and it isnt good for me.
I definitely have more simplified thinking (child-like) about these things whereas before brain surgery I was a profound thinker. The simple way of life suits me in some ways because it removes stress about how my life actually is. I have caring responsibilities for my older teenage daughter and they are now shared because i have not been able to take on the role as i used to. In my rehab after surgery, an OT helped me connect with my responsibilities and emotions around my caring role. I was a toddler so the disconnection felt normal to me. My reactions towards my daughter continue to be problematic and she shouts at me to stop being childish. I do not always recognise what I am doing to be childish.
On an emotional level, I seem to care less. Again this has its benefits because again it removes the stresses that my life has within our family home. I can focus on a simple thing that brings me peace and joy even if there is chaos around me. Not all of the time, sometimes I do feel the tensions and the other strong emotions. When I do feel the strong emotions around me or my own, I find it hard to process them and like a younger person I do not work through it like an adult would, instead I retreat. I no longer think that I have to resolve the situation. If strong emotions are directed towards me, I have limited patience/ processing capability to stay calm, I react and mirror the emotions sent my way. This isnt helpful when faced with a person in meltdown. It is in these situations I am often seen as childish. Thankfully I have someone who can step in. These are big changes in me.
Tantrums...yes i flip and whereas I can move on quickly a lot of the time, it has a longer affects on my family members. I struggle with so much fatigue that having tantrums is not often possible, a lot of energy is required to have a tantrum. A lot of energy is required to feel emotions and cry and to shout. I have not had that available energy. When I do cry and shout it is usally from a build up of not being able to verbally express my thoughts. That is toddler-like behaviour and I have only just realised it now! I think this is the hardest difference I have faced - not being able to say what I want to or not being able to process the thoughts due to overwhelm.
What you describe in the hopsital is hard on several levels. You must have felt frustrated and vulnerable. Calmly asking someone for help was out of your reach. That is okay. We can't always do what might seem to be the easiest option. When thought processes are involved, the easiest option is often not on the table because there is too much going on. Letting out your emotions by siting on the floor might have helped you to keep it together in the scan room where you also felt tearful. When losing it in public and your heart feeling broken it is an awful experience. I have had it a few times and always when going for a hospital appointment. I lost confidence after it. I didnt like feeling that vulnerable and felt shocked because as I said, I do not cry easily, nevermind gulping inconsolable tears. They were panic attacks and I think that might be what you had given the situation of being lost? {anic attacks are demons from hell. Mine seem to have calmed down touch wood but I havent been to a hopsital in a while and dont go out to new places much. Im rarely out alone unless it is local.
We pick ourselves up and off we go.
There is a lot to be said for feeling younger. Grandparents have some experience of this when looking after their grandkids. The wonders of feeling younger. I just ignore the negative aspects of it as best I can. I am very silly now. I have had to learn what is aggravating to others and I am better at reigning it in.
Sorry for length. Im just pondering. I seem to be able to think more on Headway than I do in my real life. It is because the subject is relevant to me.
I believe I’ve commented on your situation before, and whilst I have no magical way of providing you an answer that could ease your anxiety, I just remember arriving at an explanation that made sense.
We are born with only the most basic abilities to eat, drink, poop, sleep and cry.
As time progresses, we grow and we learn to walk, talk, think, learn and many other skills including memory and how to respond to fear and anxiety. If you’ve spent 50 years doing all of those things, along with other life experiences etc. - then have a stroke which resets the development clock, you’re in a position where you suddenly have to cover those 50 years of life in as few days as possible.
Something we both know is not possible.
I’ve learned to accept that I am a new version of myself, much like Windows 10 is a new version of Windows 7, and with that in mind, I examine which parts of the new me are the same as the old me - so all I have to do is learn the new me. Of course, learning only the new parts of the new me is not as simple to learn as selecting a different drop down menu from previously. But, knowing I only have to learn the new stuff if it is important to everyday life.
I won’t say I’ve ‘learned the aspects of the new me’ - I’ve learned workarounds to the no longer effective previous ways of doing things. In respect of your hospital trip, I am unable to leave the house by myself, so have my wife to take me and take me to the clinic where my appointment is. I’m much luckier than you in as much as I have no anxiety about my situation, I just accept it and get on with it. The down side to that is I have no emotions, very few feelings and very little interest in anything.
I wish you well in learning to live with the new you - we’re always here if you need help or a sounding board.
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12 months today 
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