Headway
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Hello

Hi my name is Lisa-Marie and Im new to the group today!

I had a brain injury in 2013, then found out I had Hydrocephalus and then contracted a brain infection during shunt surgery, all of which have left me with some problems. Ive been trying to be the "old" me and carry on the same but am constantly failing! It would be nice to get to know others with brain injury to share experiences and not feel different all the time. Im a happy positive person, but have lost contact with most of my friends since being unable to work. Just wanted to say hi to you all and I look forward to getting to know you. 😀

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Hi,

Welcome to the site! I'm Andy, a part time brain damaged Baron and full time idiot. 23 year veteran of brain injury, epilepsy, and other conditions related to the smack on the head.

The others will be along presently, in the meantime, ask anything you like, settle in, put the kettle on, etc...

Andy

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Hi Andy! Nice to meet you. Im a newbie to this so still got loads to learn!

I figured its about time I met others similar to me instead of being a square peg in a round hole with " Normal" hate that word. People. Im terrible with technology so bear with me.

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Hi Lisa-Marie

Sorry to hear that you have had so much to deal with. I really understand about the old/me new me problem. I liked the old me. I think he was socialable, pretty funny, intelligent enough, and quite kind; and I want him back. But I keep knocking and I dont think he is there anymore. One of my greatest pleasures in life was research. And I think if I put more time in then I will be able to continue with it - just at a slower pace and maybe not quite so polished. But I try every day and evry day I make no progress. I cant even read a long sentrence without forgetting what was at the start! But Im not ready to give up on this yet .

I think this new/me old me thing is pretty universal after brain injuries. Maybe the core of us is still the same - the soul or spirit if you like - but some of the tools for that spirit/ soul doing its thing in the world are not as functional as they once were. But its still us. One problem is knowing how much of the problem is underlying brain damage and how much is about psychological impact of what has happened. And maybe this becomes clearer and the psychological impact lessens a good deal.

Anyways, wishing you al the best.

R

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Hi Charlie, thanks for replying and welcoming me. Like you I also liked the "old me" I was a Psychologist working in child protection, I had a crazy mad job but it gave me purpose and I had a great social and family life, then it all changed with a head injury....

How do we get to know our new selves? If I was getting to know an actual real person, I would spend time with them conversing and sharing experiences, in order to build a solid foundation. How do you do that with yourself? I miss work terribly, I am so bored sitting doing nothing, but not sure what I want to do. I want to turn this into something positive , just gotta work out who I am and what I want lol. Easy right? 😁

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Sorry to hear about your accident today. One darn thing on top of another. Hope all heals quickly. Pyschologist in child protection sounds like fascinating and very valuable work.

Good question about how we get to know ourselves. Let me know if an asnwer springs to mind. Thinking about folk Ive got to know then it has just kind of happned, driven by mutual liking and enjoyment of each other's company. Trouble atm is that Im not so kean on the new me and would avoid him if I could. Also what/ who is getting to know what/who? If the old me has gone, then who is getting to know the new me? I guess the old me must still be there or these questions would be meaningless to me. Though I might be talking nonsense. tbh I just want to feel a bit of happiness again (as was pretty happy before all the s*** hit the fan) and maybe it wont matter in the long term who is the exact person being happy.

Also, looking back, Im not sure that the differbce between me now and last year (before the .. etc) is greater than that between the me last year and the younger me. I guess we chnage and its just that we normally change in a dirction we want to and at a managable pace. but wioth brain injury its chnage fast forward with fate at the steering wheel.

I hope that you can get back in some capacity to the work you did before. Maybr part time?

best wishes

R (whoever the heck he is!)

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Hiya! Sorry just found your message. Me and technology 🙈🙈🙈

I agree with all you are saying, its so bloody complex! Its like the real life version of the body snatchers 😂😂😂 everyone changes, even without bi, life, grief, trauma, money even all change us, so whos to say even without the bi we would like ourselves? Ive met some terrible people who have no bi and choose to be hurtful to others. And we can all change, we are fluid, who is to say that the person we are now is the person we will be two years from now?ive set myself a challenge, for the whole of 2018 im going to try new experiences and opportunities, when asked i shall say "yes" unless its dangerous or illegal ! Lol. Im going to try lots of new things to see what i like what i dont like and get to grow as a person. I dont believe in standing still and refuse to accept anything cannot be changed. We have the power! 💪💪💪💪

Im hopefully going to be doing some counselling work voluntarily at the local food bank , dipping my toes tentatively back into therapy........ xxx

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I'm sorry this happened to you. I also sustained my brain injury in 2013. Constantly failing? Compared to what? Here's a new way to compare your new life. Start measuring your progress from right after your brain injury and what you could or could not do then. Forget about measuring yourself against how your were before the brain injury. I have to admit it has been a big challenge for me. Finally after about three years I started to be able to accept at least some of the new version of me, even though I didn't want to. I still have times when I compare myself to the old me. Cut yourself more slack. Be kinder to yourself about how well you're able to function. If nothing else it will reduce your stress about it. Looks to me like your succeeding as the new you. It just isn't what it once was. Wishing you smoother sailing ahead.

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Hi in trying to reply but it wont let me?

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Hi thankyou, Its true I forget to see how far i have come since the accident. Given me food for thought, Ive always been a hard task master on myself so need to learn to be kinder.

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Yes, I relate to the being a hard task master on myself too. I'm getting better at being easier on myself, although kicking and screaming all the way. Kind of ironic. Haha.

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DEFINITELY! I find im harder on myself than i would ever be to anyone else. My therapist says I have to treat my condition with the same love and care as i would give to someone i love who got ill..... again easier said than done. Xx

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lisa marie70 any of these describe your personality, noise intollerant, hate crowds and strangers, mood swings and possible aggressive behavour, inappropriate behaviour?

did it happen while they were trying to put a shunt in?

welcome to our club, docs have the theory but we have the practical experience to help one another because we no what its like.

steve x

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Hi Steve, yes lol all of the above except aggressive behaviour. Although i did slap my mum for something in the early days after the shunt operation.

I also hate music now, its just noise to me. Be great to hear the theories! 😀

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Hi there! My name is Kate and I too have hydrocephalus which I have lived a 'normal' life with up until the last couple of years. I now find myself at the ripe old age of 47 dependent on my family and unable to work/leave my house without assistance because I can't walk and my memory is non existent! So would love to chat as I seem to have a lot of time on my hands these days...😄

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hi kate my brain injury was the result of a stroke 6 years next month.

my problems sneaked up on me gradually, those ive already asked you about and in the past couple of years epilepsy following a horrific spell of spinning.

i only go out with my wife, because im scared of having a seizure in the street and people just walking past, plus i live in a 1st floor flat, fortunately there arent too many stairs.

let me know when youre on here kate and ill make sure im logged on.

steve

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Good morning Steve! How's things today? I am determined to have a good day today had long awaited ill health pension letter and looks like my finances are going to be ok can breath again! 😀 Kate

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pip70 im good. had an appointment with neurologist on friday, this one was a new one, pushed questions at me, listened to what i had to say.

at one point she asked if id had a frontal lobe stroke and was surprised when my wife said no.

she going to look into it further and ill be having further sessions with her.

anyway enough about me, pleased that youre getting things sorted financially, thats half the battle, means you can relax a bit more, concentrate on hobbies.

i draw badly, i do watercolours badly, but i lack concentration so in need to keep coming back to them to complete each task.

what are your hobbies kate?

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Concentration is a major problem for me 2 old Kate loved arts and crafts, knitting, sewing anything creative. But as my symptoms have got worse have problems completing tasks. I also used to be quite a cook but that task has now been taken over by my long suffering hubby as he got fed up with burnt offerings!!! Need new hobby any ideas? Kate 😀

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hi kate yes with the exception of the cooking, theres no reason why you cant carry on with your old hobbies.

set them out, so when you get bored you can go to another one and if youre like me remembering to go back if youve stopped for a break, hahaha.

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Hi Kate! Sorry for late reply, I lost the thread! Technology defeats me daily.

We are so similar! Both 47 both hydrocephalus and both been ill only a couple of years or so!

I had a tbi in 2013 then they found hydro so shunted me.

Like you im Bored!! So much time on my hands! I keep internet shopping but thats got me in trouble so thats stopped now lol. Nice to meet you. Xx

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Yes it's uncanny! I also struggle with tech and also lose threads! normally get my daughter/hubby 2 assist, but trying 2 get to grips and be more independent with one aspect of my 'new' life! Might try a computer course to fill in some time who knows... Kx

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Yes im thinking of trying a course of something, ANYTHING. To stop this boredom. Ive started driving again so getting out more but only have family or a couple of friends, they all faded away when i didnt recover back to the old me. Ive set myself a challenge for 2018, im not going to say no to any invitation or opportunity unless its dangerous. So far ive joined a church, volunteered for a soup kitchen and joined Headway and this group... and its only January! Where will I be by October? 😁😁 its great fun. Xx

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Go for it! I wish I could but my activities are limited to those I can do sitting down these days! Have fun Kx 😀

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Bless you thankyou. I was the same but can stand for a little bit now, then the pressures make me dizzy. I make sure wherever i go theres lots of places to sit. I have a lot of falls too, do you? Xx

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Morning! I have had falls tend to end up on my bum mostly if I don't concentrate or have a wall/furniture to hang on to! But I definitely have good/bad days but I have to remind myself on good days of my limitatations and not do more than I can safely manage... It's not easy though I am learning to accept 'new' me! X 😀

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Im thinking of strapping foam to me so i have soft landings 😂😂😂😂 or a giant baby walker ! 😂😂😂😂😂 Xxx

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I am lucky to have a Beyonce butt with in built padding so if I fall I have natural soft landings!!! 😀😋 have recently been considering getting a Zimmer frame!?! ... X

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Welcome Lisa-Marie. So many of us have reluctantly said goodbye to our former selves, whilst others are still struggling to accept the transition, and yet others (like myself 6 years ago) are still determined to reject their limitations.

It's a strange journey with no time for preparation and no way of knowing what the end result might be but, almost without exception, it's a blend of trial and error, bloody-mindedness and, most importantly, humour which sees us through.

Glad you've found us m'dear ; see you around ! Cat xx

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Hi Cat, thankyou for replying. I agree a sense if humour is most important. I laugh everyday, and even in the darkest times we've managed to find some humour there. Luckily my family are just as nuts as me and refuse to let me sit all depressed. Thank goodness. I feel like theres a whole new world out there for me to find, just guess like you say it will ve trial and error. I made a resolution at new year that 2018 was my year to saying yes to any new challenges or experiences unless it was dangerous. So watch this space! 😀😀😀

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Good girl Lisa..................I'll be watching !! xx 😃😄

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Hi Lisa-Marie, I also encountered my TBI in 2013. Great to hear you’re positive, that’s a key for me, but I did have challenges in the first couple of years.

Dealing with same people I knew before bashing my brain has always been a challenge, lost some kept others. Fine now though, I only look forwards and everything is going exactly where I want it to.

Take care of yourself & stay positive x

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Hiya im so sorry, I thought I had replied to everyone but just going through i seem to have missed you out. I sincerely apologise. Same as you 2013!!! That was a bad year eh! Ive maintained a good sense of humour, no filter tho which gets me into trouble but also makes me a bit vulnerable so Im trying to get help with that. Has that been a problem for you?

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Not been a problem for me, probably due to the fact I’ve never been over emotional. I’ve also been a black or white guy, never liked to over complicate anything😄 Also don’t let myself worry about anything, utter waste of time or energy! Ultimately, life is as complicated as you want it to be. I’m sure you’ll get everything under control in due course. Enjoy life, you only get one👍🏻

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I envy you!!! My hubby is the same, hes the calming influence, it works perfectly. Im very positive and kept my sense of humour we do a lot of laughing. Life is definitely too short for moping about xx

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I had my SAH in 2015 and then a seizure just a couple of weeks ago. The folk here have been so supportive and helpful. I'm glad I found them - you will be too. Welcome!

Mike

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Hi Mike, nice to meet you. Thankyou for sharing. Yes Im so glad i found the group, you are all lovely and welcoming. Xx

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Do I like my new life better than the old(?), no but I take consolation in the fact that I'm not delusional.

Am I a better person, probably as I now have more empathy and a greater insight to what makes us human.

Knowing yourself and finding you've lost part of that is a traumatic psychological event. I used to joke about the B movie "Invasion of the Body Snatchers", in the future the new you is the you. Coming to terms with that can take a long time.

Perhaps the biggest barrier between Normalies and us is language, as we have no shared words for our new internal world.

I found that going to my first Headway, I had the realisation I'd joined a secret society where only the members understood the language we're forced to use.

If you've yet to go to meetings in your area I'd say they're a fantastic support group.

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Hi thankyou for replying, and yes I agree with all if it. It is like we are new people in our old bodies, and getting to know this person is hard. Some bits I like for instance the empathy and the creativity. Hate, having no filter, cant keep a secret and have become very structured. Yet my impulsivity part if my brain is a nightmare, it was damaged and irreparable. I make shockingly bad decisions at times! Im desperate to join the local group. I will find out their number and call them thankyou. Youve spurred me on to do it and stop procrastinating. Xx

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I was just the same , I've been out of it for a year but I started work last week and even tho I know I'm slow I'm positive , being on the site is so comforting, lovely lovely people x

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Thats great news! Hi by the way!

I bet its great working again, you will get faster, everyone brain injury or not is slower wheb they first learn a new job. Congratulations! Xx

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Hello Lisa Marie

Nice to meet you. Some very wise words above. And Welcome to our group. 2 years on (I think - keep forgetting when it happened-encephalitis) I still struggle trying the impossible- that is getting back to the old me. Some days i can accept my fate - others i fight me and the world - so my only advice, should you wish to take it - is do try and remember deep down you are still you. No great insight there I know, but it does help me. Oh and yes it is a tough deal. But there you go it is what it is and all of us on this site in our own way do the best that we can. I am sure that you do. It is very comforting having a site like this to know that there are other people who are going through similar struggles and having a range of success or failure and guess what? it is normal to have these feelings. Until I found this site I didn't realise that it was ok to have these feelings and boy did that help me. Hope it can help you too. Clare

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Hi Clare, thankyou for your reply. Yes my encephalitis I contracted after a shunt insertion caused me lots of brain injury too. Its a nasty infection but we are lucky we got over it. I agree Im finding it so nice to share my feelings and experiences and not look the odd one out. Ive already had some great advice. I look forward to getting to know you all. Xx

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hi lisa,

welcome to the site, you are definitely dealing with two of the more confusing and upsetting aspects of life post BI being the old me/new me thing and your relationships with other people. I put my learning into a website that you might find useful, you can read it here braininjuryftp.com

all the best

neil

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Hi Neil, nice to meet you thankyou for replying. Ive had a fall and ended up in hospital with a damaged knee and now off my face on pain killers but I will definately look at your site, thankyou for sharing it with me. Its good to hear different stories and how others have coped. The new me/ old me is very challenging to get my head round xxx

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Hi Lisa welcome,

I had a brain haemorrhage when I was 21 that paralysed my left arm and leg and gave me awful vision and epilepsy isn’t that wonderful!

I understand about what you mean about wanting your old life back but I love my life now I’ve since been to university got a 1st degree, had a few decent jobs

Met my husband got married and have our first child

So not in work at the minute loving life at the minute (maternity leave)

It would be easier if my body worked like its supposed to but you have to make the best of what you have and I try to have that attitude for my daughter!

Also have endometriosis too

X x

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Hi! Wow thats a big thing to have dealt with at such an early age bless you. You are an inspiration for how youve overcome your condition. Xxx

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Thanks very kind of you to say, we all get dealt a different set of cards it is what you do with them that counts! It sounds like a cliche but I have always tried to adopt the attitude admittedly sometimes I’m not always as positive as I would like to

You just have to keep on going don’t you and just hope that everything falls into place! X

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Most definitely! Im the same, a positive happy person who always tries to see the good things no matter how small, im glad our conditions havent taken that from us, i have the odd down day but hey we are human! I soon pick myself up. I always say to myself when im feeling down " it's just a feeling and feelings pass and u can choose how you want to feel " that usually changes me. Xx

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You sound very positive and up beat which is nice to see! X

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Certainly am! And you too! 😁😁

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It's my husband that normally gets me out of my down days he's a kiwi and very blunt and tells me 2 b grateful as I could be dead!?! But I don't know wot I would have done without him & my daughter the past year! 😀 X

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Haha! Love it! My hubby is a straight talking lorry driver, he doesnt let me dwell in self pity, thank goodness for them eh? Xx

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Good to have upbeat people around you you are very lucky! X

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Its only when you have tough times you realise how lucky you are i think? My hubby had a heart attack and stroke at 44 two weeks after my tbi, he was in one hospital i was in the other, kids going in all directions, i ended up with shunt operations etc and he had a triple heart bypass. Recovery was hilarious! Both of us in a double bed in our jammies whilst my mum moved in to look after us, the kids said we were like the grandparents in willy wonka 😂😂😂 but we got through it by laughter and humour. Its what keeps our family strong. We must look nuts to the outside world but hey ho! 😂😂😂 xx

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Love your attitude x

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