Dont know why no one has suggested here before as it is four years since my TBI.
Never thought it would still be significant after all this time, but quickly reading many posts, I find I can relate to and if necessary offer my experiences to help others too.
I used to find opening up difficult, but it can help. A trouble shared is a trouble halved as the saying goes. And hopefully more than helplines that just listen and cannot relate or suggest any actions. Not expecting too much but do believe that those who have experienced traumas are well placed to advise what helped them.
So keeping it positive....best for 2021 to all especially those using Headway........stay safe
Written by
Shreds
To view profiles and participate in discussions please or .
Welcome Shreds ; glad you've found us. Yes, it takes time to realize we can't just 'wish' the after effects away and to learn the tricks & dodges to navigate the issues !
Happy new year to you. Hope to see you around.... Cat x
Good morning - 20 years plus since my accident (Glasgow 8) and could still write your post genuinely. Ignored it all happily and thought I was entirely normal until 18 months ago when my family started up. My mother took me to court for trespass in our family home and in documents at court said I am normal regardless of what clinical neuropsychologist says. Getting help is almost impossible.
Nobody told me about the site either, found it by mistake but can't remember how. It was the same with Headway nobody told me about them either. I've come across doctors, consultants are not very forthcoming with them.
I only rang Headway early on because my sister told me about them. I printed out their sheet for GPs and took it in with me, after one of the chats with their helpline. Even then it took me two years plus to find this forum... So glad I did 😊
My GP referred me to a trial NHS programme “Working Win” after I had no real follow up after my TBI. (“The NHS has no funds for people who recover but can put you forward to see if they might accept you on this trial?”
This trial was good, with the aim of getting people back into work or putting their business on a sound footing after a major medical trauma. That has finished now for me (annoyingly just at the point the assistance and support was most needed), but they had a tie up with Westfield Private Healthcare and the Samaritans both of whom were appallingly and of no help whatsoever. In fact I said sack them both, they are just leaching money from the system which would be better utilised. Other helplines they suggested were equally not much use at all.
As my neuro said at the time of my recovery, “we can do the mechanics of fixing you, the rest is your determination and willpower”. How true.
In fact the words and discussions with the neuros were about the only ones of great use and have proved to come true. Everyone else in the NHS seem too afraid to open their mouths for the sake of getting it wrong. So sad a state of affairs. Too much power in the hands of the ambulance chasing rich lawyers, over people trying to do their best with an underfunded and understaffed health service.
I have neverless passed on Headway and the forum to my Working Win consultant for the benefit of those who follow.
Jen, yes Working Win has been given a second phase.
Not for those who took part in the first trial but for a new tranche of candidates. Limited funding allegedly.
So if I was nominated or applied for phase II I probably wouldnt get a place unless my circumstances had changed markedly.
Even on phase one 50% of those admitted went in a placebo group receiving leaflets and information but not regular (fortnightly, sometimes monthly) direct consultations with a business mentor to discuss how to progress getting employment or develop own business, plus how medical issues cause restraints.
I found it useful and motivational as it highlighted progress when perhaps I was not aware of any.
......sorry not yet written a blog about my experiences yet. Will see what I can do... need to be in right frame of mind to do so though.... watch this space. 👍
Have added a short profile about my reason for being here (TBI!). Does it need more than that?
When I suffered an infection a week or two after initial accident, I was at home with an OT here but stopped making sense apparently.
Wife contacted Headway who gave immediate advice to get to A&E immediately ( why the OT didnt recognise that I dont know?).
But thats why I am so very very grateful to Headway.
I couldnt even stand up on arrival at hospital and thats the last I recall. Apparently they blue lighted me to a specialist neuro unit thirty miles away, which was where they didnt expect me to survive.
So thats my story. But I am still here, no memory loss other than the accident itself and very greatful to all those involved.
Its taken a long time for me to open up, I am also very honoured to ‘have a second chance’ at life. Most dont get the option. We live on a knife edge everyday.
What I find frustrating is some others are selfish. uncaring and generally unpleasant human beings. I despise such people. How do you communicate the trauma of NDE to idiots?
Thanks for asking and responding anyway. Best for 2021.
Not surprised it's taken you a long time to open up as you say, it sounds like a harrowing experience for you and your wife, and those around you. It's a lot to process, to say the least. Full marks to Headway though!
Sorry, didn't mean to push you into posting a biog, hope you felt ok about it. There's a wide range of BI and personal experiences on here.
That is the value of this forum, because it's really hard for people that haven't had a BI, let alone a near death experience, to understand and/or empathise successfully. And on the other side of the coin, many of us now have short fuses since our injuries - and probably seem more unpleasant to others!
How are you now? I'm thirty months down the line from a mild TBI, and still struggle to manage my fatigue, and have decision making and memory issues.
Do you mind if I just post when I am in the right mind set? I do want to explain my story, and I am pretty sure I now have it all pieced together.
Neuro explained things would come back slowly but not to force them.
He said I probably would never get the accident fully back, as your brain auto deletes such trauma somehow but to avoid anxiety and conflict as that would cause regression in recovery.
I have rationalised that memory is just leaving the car in a vast multistorey carpark and knowing the colour and reg number but not knowing which floor or where on the floor to start searching.
Looking back, my time in hospital for me was the ‘easiest’ although I was convinced they were experimenting on me and also that I was running up a huge hospital bill / letting my clients down.
Obviously it was NHS, although on reflection I now realise some of the daytime talk in the ward was between people who had gone private or who were being put through that way by employers / unions / insurance policies that I didnt have. The experimenting thought thing apparently is common in neuro wards though.
The worst part was for those like my wife who came over everyday not knowing whether I would be there next morning or if I would be a vegetable. I did a good impression of the latter in the early days apparently.
So I am about fifty months on from being discharged, and about four and a half years from the accident. Still get the fatigue thing, but not if I am out long distance cycling, but can suffer on long car journeys (3 hr plus), or if in the office. I think it must be again to do with how much pressure you are putting on your brain?
I do get stressed by idiots unfortunately. Far too many of them out there.
Sense of smell and taste are at long last beginning to return. (A common side effect of TBI. Again I rationalised that those are ‘learnt’ behaviours. A baby cannot differentiate between a scotch and a brandy, not that they would be allowed to try, so it is something we pick up much later). So this must be able to be relearnt!
Right thats all for now.
Stay safe, stay well, keep being positive and thanks for being an encouraging mentor to a newbie like me on here.
I did that and my GP and consultant both just put the print out I did from the sight in their pile of papers without looking at it or asked what it was. My doctors have never been very welcoming of Headway and tend to dismiss me when I mention them, not sure whether i'm not talking right or they just don't have much of an opinion about them good or bad.This whole process I have been left to deal with it on my own with no help just about given up with medical people now, they've done the damage now they don't want to no.
Oh that's awful Chelle. Headway are really reputable. I think my sister told me that it was originally set up by a neurosurgeon(?) who knew that people weren't getting support with brain injury.
Do you do ring the Headway helpline yourself just for ongoing support, and do they help?
Appointments are so short, I always seem to come out having forgotten to ask what I need to, and I only had a mild/ moderate TBI
Welcome! I didn't even realise that I had damaged my brain until 6 years after my accident so you're doing better than me already :-). Loads of helpful stuff on here. Knowledge is power. And may I suggest keeping in touch with Headway and attending your local meeting so that you can chat with fellow Survivors. Stay Safe.
Good advice, although just for the record, I did get in touch with the local Headway group and the assigned nurse had a couple of conversations with me last year.
Unfortunately my nearest group is only about twelve miles away, but living in a different county despite having the same postcode, I would be assigned to a group forty miles away in the county town.
Stupid, but not her fault and she said I would still be welcome to drop in and she would try and find ten minutes for a one to one although not to be shocked by the other regulars, some of whom would never fully recover and needed a lot of close assistance.
Fine, I accept I am lucky, but in the end I rang and decided not to bother as it was not really going to assist.
I am more than willing to help others less fortunate than myself and at one point also a year ago, the hospital suggested I might fit into a pilot project they were doing called ’expert patient’.
Again happy to help but then came along Covid and it was suggested to delay it, as I probably fell into a vulnerable group following my accident. (Pre existing medical condition - fractured skull and neurosurgery) “We have fixed you twice, we cant do it a third time”.
I attend a Headway group every 2 weeks or so (pandemic permitting) that is in a different Postcode and County to my home address. The Wife & I like to attend as it's good to remind ourselves that some of my challenging behaviour isn't just me being difficult but is brain damage related. I'd pass as 'normal' in a pub or cafe BUT have real problems with organising, sorting, prioritising, new learning, memory, fatigue, anger management, motivation.. Some people at the group appear OK, some not so, but we're all Survivors and have some symptoms in common. My accident was in 1998, almost 23 years ago but I still value visits to my local Headway group. Good luck.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newbie saying hi ;) 
New member saying hello from Devon
Hi,new to site and I'm in Newquay
New on here. Life after a SAH
new here, unsure where to start!
