Reconnecting

[Survivor37]

Join this forum last year but I got involved in wrong frame of mind. I had to leave as my 38 year journey living with BI has been taking all sorts of turns just recently. I've learned so much about my own BI in recent months (not from docs) but from sitting and listening to Podcasts of other BI survivors with their own stories..I was completely blown away. My BI was back in 1983 and I've lived and worked with it until 4years ago as I couldn't hide anymore and had to give up work I didn't even know my BI existed ..I have no memory of my road accident still to this day and I probably never will but the struggles I face every day/night are very real my accident replays in my sleep but when I wake I have no memory of it. Slowly but surely I am starting to tell my own story of 38 years living and surviving BI..I was 10 when my life changed forever now at 48 I feel I have to tell my story 👍

[Pip70]

Hi I have a congenital brain injury which I too was able to live and work as a ‘normal’ tax paying person until the age of 46…now I am 52 and unable to work or walk unsupported! I would also forget what day/month/yr if I didn’t have it written down! But with the support of my dear family somehow seem to muddle through life day to day😉with the exception of housework/cooking which got taken over as they got fed up with burnt offerings🤣keep smiling Kate😘X

[Survivor37 in reply to Pip70]

Massive well done to you Pip70 I too tried so hard to be like everyone else growing up and managed it to a point I could never get past 2 years in a job due to memory problems and fatigue which killed any career hopes my shorterm memory doesn't work. My son's support me these days cooking cleaning etc .I come from a tough generation that never spoke about owt especially BI the word TABOO comes to mind back then they fixed my broken bones but my head injury was not thought of once the blood clot came out of my nose..I have a vivid memory of filling plastic cups up with blood gushing from my nose while in hospital but that's it don't know owt else..these days I'm able to find peace with the help of my dog and my immediate family but do struggle always now. Good luck to you on your own BI Journey..👍 x

[Pip70 in reply to Survivor37]

I feel very lucky and somehow managed to achieve all my main life goals career/marriage/travel/daughter all before my BI symptoms set in and stopped me in my tracks…the specialist called it decompensating! So I am now set up in an Alexa and home adaptation world generally living quite well😀

[Survivor37 in reply to Pip70]

Yeah I too feel very lucky to have come as far as I have I'm a dad to 2 amazing young men and I am blessed to have 2grandaughters in my life aged 3 and 18 months. BI is can be also a gift I've learned my BI gave me an awesome drive to become the best in everything I tried but 4 years ago it all stopped..I still have a drive inside but fatigue plays a massive part in things these days in everything I do both mentally and physically..BE PROUD Pip 70 BI has made you who you are..battle scars I call my BI💪💪👍

[Pip70 in reply to Survivor37]

Yep battle on and always smile as life is short👍😀

[Trevor78 in reply to Pip70]

I didn't achieve any of my life goals because I didn't really have any as the teenager I was at the time. My TBI certainly pulled the rug from under my feet and sent me on a route of daily living & drifting without laying any long term foundations. Four decades have passed, along with my working life, and that's the place that I still am at. Quite depressing really but fortunately I am still better off than many such survivors so that has to keep me going.

[Pip70 in reply to Trevor78]

Hi there TrevB296 I have recently returned to this site on a bad day and have decided it’s good for me as it gives me a reality check that I am really very lucky to be able to enjoy a life(limited by BI) quite comfortably in an adapted home and looking forward to our first overseas holiday since before the pandemic in the summer😀

[Survivor37 in reply to Trevor78]

I can relate completely to your comment I too haven't managed to get there for all the trying in the world as a teenager in the end found the darker side of BI Addiction/Alcoholism..thankgod I'm 15 years clean now. My accident robbed me of my innocence before I'd even got started but I survived god knows how..my journey living with BI has been choatic and like a rollercoaster..my BI has made me who I am today and I stand PROUD 👍

[Trevor78 in reply to Survivor37]

Sounds a bit like me. I spent much of my free time, especially weekends, blotted out by alcohol and all of its negative effects. Eventually I got a bad stomach requiring GP treatment, pump inhibitors & threat of endoscopy. I stopped drinking overnight and have only had 2 glasses of wine (no beer) in the last 9 years. A psychologist once said to me that you've missed out on your twenties so it's important that you don't miss out on your thirties. That sounded fine at the time but ignored the elephant in the room that I couldn't do it alone and needed intensive support to achieve that aim. I doubt that he'd have worked that out (problem being that I don't look too injured) but he left that job after one appointment (not because of me I might add) anyway. So here I am 3 decades later and I feel that I've missed every one of those decades. As you say though, to survive and get to this point is something to be proud of but it's tough when you've just been a passenger on a journey that you didn't choose and found pretty impossible to accept all of the way through. Anyway, my mind is wandering and I'm rambling now so will leave it there 🤕 😴

[cat3]

After a troubling childhood I finally talked, aged 50, with a counsellor over a 12 month period and, despite intense skepticism, I came to understand the value of telling out loud the dark and unspoken contents hiding in my head.

I started off by saying "This won't work" but at my final session I shed tears of gratitude and relief and left with a new take on the simplicity but effectiveness of 'Talking therapy'.

Putting your thoughts 'out there' can be helpful for others, but I believe it's main rewards are self discovery and reliving events within the safety of hindsight.

Get your story out there Survivor !

Best wishes, Cat x

[Survivor37 in reply to cat3]

Cat2 you were so lovely when I was on here last year my user name is different now I spoke for a few months with a few can't recall their names not sure if I can jog your memory Stammers1 was the name then..I so pleased to reconnect with ya hopefully you can remember me 👌👌

[cat3 in reply to Survivor37]

I do remember you as 'Stammers' m'love and it's good to see you back ! I still look in here most days as this forum is the 'go-to' space for my kind of normality ! 😑

Hope you stay around this time.... Cat x

[Survivor37 in reply to cat3]

Ahh I'm so glad you remember me cat3 I'm defo staying last year I couldn't work this stuff out properly hense why I left I'm not going anywhere now 👍👍x

[cat3 in reply to Survivor37]

😑 x

[catrabb1t in reply to cat3]

Hi Cat have you ever felt gagged since BI? I hope that makes sense? What I mean is unable to express in words (in writing too at that moment) how you feel in a situation. Like wearing a gag, just cannot get the words out, or get a few words out but cannot say what is in the brain.

Also, having a gag on the brain whereby cannot get feelings in to thoughts in to brain - usually in a situation involving high emotions. Sometimes not knowing the emotion but feeling the enormity.

Both can end up as a meltdown (panic attack?), or I freeze if in public an trying to communicate eg a Reception desk, or I just feel a black void in my brain.

Perhaps another way of describing it is I feels like I am suspended in mid-air trying to speak. Perhaps ignore this one lol!!

I experience these intermittingly, most often in situations with big feelings, possibly more so when tired (which is all the time lol).

It is a reason I do not write on here as much or phone Headway or find a Counsellor because the words fail me.

[cat3 in reply to catrabb1t]

Absolutely true catrabb1t. The more passionate or emotional I feel about what I want to express the more my brain shuts down. And my word recall is abysmal which is so upsetting after an intellectual life and a love of learning & conversation.

It's more problematic, like you say, when stressed or tired. And at the first stumble - BOOM - the stress hits, so it's a Catch 22 on a continuous loop.

I think many of us also have the paralysis of emotion (or gag as you put it) when it comes to overwhelming events. I'm often like a duck in a thunderstorm when faced with a traumatic event and need to isolate myself 'til I've got my head around it !

It's why I find Headway so amenable ; I can take my time finding the exact words to express what I want to convey without dithering, feeling stupid and just shutting down. And I don't have people finishing sentences for me either !

Maybe try coming here more often ? There's no time limit here for collecting thoughts & finding words before clicking SEND. 😏 x

[Leaf100 in reply to cat3]

I also cab relate to the gag notion. Sometimes the words are not there at all, a complete blank, or I cannorpt find ines that are appropriate to standup for myself.I am currently looking i ti hormines as I yhink part for me is low testosterons - both male and femail need testosterone in the taget range and if you dont have enough you h ave a lot of issues. I think hormonal balance is vastly overlooked.

I don't think it is the entire pucture, though.

This whole chapter that gcan be put under the gag label is one i think others that dont have it find particularly hard to relate to, and may think other things are going on than are going on.

So glad you brought this one up.

Leaf

[catrabb1t]

Welcome back. I;m new since you were last on here. Your message is awesome.

[Survivor37 in reply to catrabb1t]

Hi welcome to you too catrabb1t. My story ov living with BI all these years is defo one that needs telling. I've been silent for too long regarding my own struggles with BI. Back in the 80s I couldn't speak about disability at all to anyone hense why I just got on with it best I could I knew back then that my life/personality had changed forever..fast forward 38years and I'm still here thankgod..best of luck on your own journey 👍

[Hidden]

Welcome back Survivor37! I too remember you as Stammers, hope you’re keeping well 🙂

[Survivor37]

Hi TBIX I've changed my name on here so nice to here from you I hope you are keeping well too..I've been struggling last few months with fatigue it never goes away. Anyway I'm back with yas in a better frame of mind I have so much more understanding of my own journey living wi BI I'm staying with yas from now on👍👍