I've always had a thing about dates. Especially 7th March. My TBI has now been part of my life for just over two thirds of my lifespan. I've had my TBI for twice as long as I haven't (if that makes any sense!).
It's a strange time: lots of looking back and a bit of forward looking now that the post TBI condition has had some recognition over the past few years.
After decades of my TBI being looked on as a 'bad haircut', it took a Psychologist at Autism Scotland in March 2017 to spot the post TBI problems. I had been referred there at the time because a Psychiatrist I was seeing in 2016 suspected there might be an organic problem behind the chronic and severe mental health problems I had been having since 1993.
It's not as if my TBI was innocuous, 2 days in A&E after a fall with suspected concussion before I deteriorated then underwent a craniotomy for an Extradural Haematoma. It all feels very surreal that my complaints of 'not feeling right' within months of my accident were dismissed from 1984 until 2017 and there are still yawning gaps in my care or any meaningful recognition from the NHS. I've never seen a Neuropsychiatrist, a Neuropsychologist anyone really from the NHS to go through this with me.
Next week, after a years long fight involving MPs, MSPs and the public services ombudsman, I will be having my first NHS Neuropsychology assessment. Everything else I've had to use private sector services either through my wife's employee health insurance or pay for it via a remortgage. The experience I've had is all a bit beyond bizarre. There's definitely more than a bit of resignation in how I feel but I've learned a lot around TBI thanks to Headway info, a few sites on the web and a private sector Clinical Psychologist with years of brain injury experience I've been seeing for 3 years.
Maybe the loss and adjustment period is coming to an end for me but I still feel that the majority of people around me (diminishing in size year on year) need to get on the same page as me. It's frustrating. What's more frustrating is the absence of any recognition that I spent 33 years with these problems and they were dismissed or made out to be malingering or a case of clinical fecklessness.
The post TBI problems, I can handle now that I'm aware of what is causing them but the trauma around the decades of my post TBI (which was not insignificant) being looked on as an event that was over once my hair grew back in, is a lot more difficult to deal with. I'm sure one day I will but it feels a long way off.
Just a wee stream of consciousness from brain to keyboard this morning to go with last night's 'reflective thinking' driven insomnia.
On another note (pardon the pun); on the night of my accident I had been sent on an errand by my parents which led to that random event on a random night (it's all in my profile story). However, what has just occurred to me is what I had been doing just before leaving the house around 9pm on the 7th of March 1984. I had been studying until about 8pm for my upcoming final school exams, then as per my usual routine, pulled out an album put it on the stereo and plugged my guitar in to play along with. I'd been doing that for around an hour. The album I was playing was "The Absolute Game" by The Skids. Tonight I'll be watching the same band playing an online live gig that was postponed in January. At least musically it appears life has come a full circle.
Hopefully, I'll get some shut eye in today before tapping into some of that teenage excitement for tonight's show.
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Glenquoich
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I'm sorry it took so long for your TBI to be recognised. It drives home the experience I have had, the north, south divide. It is a real phenomena.
I had my hiccup in 2011, but the neuro rehab team had been well established for many years. When I moved up north, just shy of Scotland, it is like the dark ages.
The "experts" up here can't understand my frustration when I have dealings with them. Apart from I trained and practiced in the south, I wasn't a neuro specialist, my knowledge is still better than many of them up hear.
One so called expert, could understand why I laughed at him, as he explained that he had two years experience and NVQ lll. It was only when I said I was a RN (MH) specialist, with 25 years experience, the penny dropped.
Moral of the story: Read the the patient history before digging a hole 😊
Thanks, I think post BI wise things have improved significantly up here in recent times. Especially in Edinburgh and Glasgow, after all, the coma scale was named after the city of my birth because the Neurosciences Institute was at the forefront for so long since the 1960s. When I had my accident I had my operation there and it had one of only a few CAT scanners in the UK at the time.
However, due to the postcode lottery once I was fit enough to travel a week later, I was transferred by ambulance back to see my time out in the A&E ward in Lanarkshire (near where I lived at that time) to see out the last 14 days before being sent home and I never heard a peep from them again regarding the TBI.
Almost exactly 4 years later my mate in Glasgow had the same TBI and his rehab was immediate and went on for a good few years.
What bothers me most is that the people in my position who fell between the cracks in the system have never been picked up on. Maybe they think we all drank ourselves to death or something (I nearly did) but I know I'm not the only one on this position.
In the last 4 occasions I've been in the Glasgow Priory for my mental health, there has been someone on the addiction rehab programme that has an untreated brain injury that has required surgery every bit as much as mine and left to get on with it. During my last stay there in December 2020 I shared a ward with a 45 year old woman who was on the addiction programme and she had a 15 year old TBI as a result of a serious car crash. We even had the scar and drill holes in the skull in exactly the same place. Just like me, she has been left to cope with it on her own.
It begs another question, why are addiction rehab services not screening for post brain injury conditions?
You make a valid point about assessing causation in addiction. I know in forensic there is a higher prevalence of a BI above the national average for offenders due to MH. I have a friend that works in addiction, so I'll drop him a line and see if his area does any screening. When I get an answer, I'll let you know.
I know I was only discharged from the rehab service because I was moving. I did have a letter attached to my GP notes to say that I should be referred to a neuro rehab team up here. Unfortunately there isn't a service. Everything is crisis management, descending like a hit squad, and disappearing as fast. I didn't even know that the social worker had discharged me, until I contacted them, only to be told that they only give brief interventions.
Where I had moved from the whole rehab service was integrated and continued to engage even if you told them where to go.
I am so sorry that you have had to largely work your own way through the system all those years. I had mental health issues as a kid after my mother died by suicide and was in and out of a mental health facility in Exeter. Now as an adult I still haven’t dug deeper to understand what the clinic back then did it did not do for me. I can remember having a brain scan when there was only one machine in Bristol in the 70s. I do think it is an issue with the amazing NHS that historical issues are not revisited. It’s as if they are wiped from history so I entirely empathise with you, My TBI only happened two years ago and though the symptoms of PCS have been mildish compared to others on here the pathway here in Wales to get treatment has been inconsistent and tortuous exacerbated by Covid too of course. I have been on a bit of a nostalgia trip, lately, as a result of now having time on my hands, reliving my early years in the 80s club scene. Music has been a healer for me through out my life. If I were you right now I would be playing the Skids album as loud as you can stand! Enjoy. You’ve certainly earned some fun!
Thanks, music has been my best therapy over the years.
Despite being very stimulus averse, loud music (to own my personal but eclectic taste) seems to envelope me in a safe stimulus bubble.
I've been fortunate that I can and still play and create music, despite having challenges at times with the simple things like kettles and tea bags.
I had a zoom meeting on Saturday with my private sector Psychologist (he has been helping me through this for the past 3 years) and he was stressing the importance of me doing creative activities daily. My injury/dysfunction is mainly around the left sided prefrontal region and doing some 'right brained' creative activity works for me with emotional regulation, even brain fog.
We agreed on Saturday I'd set one of my many reminder alarms on my phone to sitting with the guitar or at the piano for 20 minutes twice a day for the next month to see how much of a difference it makes.
You must have an understanding psychologist and you are lucky to have such musical talent. My stepmother was a music teacher so I tried to learn piano. Having her wary eye checking my practice sessions meant I lost the impetus and didn’t enjoy learning music in the end. Thankfully, I can listen to plenty of good music these days regardless of my abilities.
It sounds like music is a great passion of yours so your recent plan to play and experiment sounds like a very good one. I hope you find it helpful.
That's a really good idea - I've never thought about setting an alarm for painting ( am still not quite there...) thank you for sharing 🤗
And I'm really sorry about the 37 years, I can't begin to imagine what that must feel like. I've really needed all the reassurances that odd things I experience are all part and parcel of the post BI picture and not ' in my mind' and that's only a few years' worth.
Thanks Jen.It's not until I found this forum that I've felt more reassured.
Identification is a powerful thing. It's works in addiction (hence why some of us in addiction recovery go to those meetings) but I never saw the obvious logic that it would work with Brain Injury.
Then again, I have a Brain Injury so my logic won't exactly be on a par with Mr Spock!
Reading the posts on here, while some are heartbreaking. reassures me I'm not the only one going through this lived experience and therefore no longer alone.
As for the painting, my psychologist explained the 'logic' behind that one at the weekend. His point was that if I'm doing something that taps into creativity (right brain initiated) then it allows the batteries on the left brain some down time to recharge.
He was telling me he does it himself even without a BI. That at the end of a long day spent in left brain initiated activity, especially verbal communication he gets home absolutely jiggered but find an hour being creative in the kitchen with some music on enough to give the left side some downtime and results in enough energy to face that other energy sapper known as 'quality family time'.
Yes, I hadn't thought about the identification thing - good point. I've made better progress since reading what people say on here than in a year or so of therapy - even if it is heartbreaking, as you say. Some sort of acceptance of where I am - even if I don't accept it all the time. .. But some posts - just about those things people always say to us, or the things I don't bother to explain to them, trigger such a sudden huge sense of powerful recognition for me. Such a relief to hear.
I think you've just made a huge penny drop there for me actually M-J.
That's exactly the sort of technique that helped me years ago when I was working with children with statements of special needs - don't always keep plugging on at the precise skills that are impossibly difficult. Do something else you can do for a while - and suddenly the other difficult stuff can make a small breakthrough.
34 years is a long time, you'll have experienced those 'daily reminders' like myself.On my more humorous days I like to remind my BI that I'm older than it and therefore its 'elder and better'. However, it doesn't take long for the BI to assert itself enough to remind me that it's the one that's 'driving the bus'.
Sorry to hear about the stroke. A double assault on the brain sounds more than traumatic.
I know what you mean. I had a songwriting session on zoom yesterday with a rather well known songwriter, which was the result of me being bold enough to email him from my mission control centre (aka my bed) a month ago to tell him my story and my ambitions to write about it.
It was a shot in the dark from a bit part musician such as myself and a result beyond my wildest imagination.He was suitably impressed enough to want to continue with me over the coming months and told me that my lived experience was of great value to the art of writing, which is 'good in and of itself'. Whether anyone listens or not is not that important.
I've woken up today feeling that perhaps my past might be my greatest asset.
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