Please excuse me, feel a bit embarrassed having to bring this up, but was wondering if anyone else has experienced similar to myself.
I fell 30 feet 40 years ago, suffered a period of unconsciousness, amnesia both pre and post fall, couple of months hospital in-patient admission, speech and physiotherapies. Got on with my life afterwards, learning to live with the double vision, slight limp and just put everything else down to just generally the way I am.
Never really found out about the facts of the fall, knew it caused my parents great difficulties and so tried to put it all behind me, not make a big deal about it and get on with my life.
Some may call it admirable while others may think I lack gratitude for how fortunate I have been. I know I have been extremely fortunate and that's why I feel an imposter when I try and describe to other's difficulties I may be experiencing and how they may be related to a previous head injury.
Strange how I started this with an apology. Maybe I feel I should be apologising for not being worth the title of head injury survivor
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dovrob
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Yes the Long Term 'Effects', of Brain Injury, always a Tricky One. "It was 'Years Ago', so how can it STILL be affecting Affecting Me?" A question we ALL ask ourselves- the answer is Because You Have Damaged Your Brain. Although many New Routes can be found- many New 'Pathways' Formed- the Damage was PERMENANT.
Imagine a Computer that has had a Major Overload, the Motherboard, C(entral) P(rocessor) U(nit) and Graphics Card are ALL irreparably Damaged. The 'Shop' does it's best, replaces the Clearly Burned Out 'Pieces', Upgrades the Software and Fits a Brand New Disk Drive. Over the years, the addition of more Programmes, Data Files and so on Improves The System 'No End'.... However the Original Damage Remains.
This is like Your Brain Rob so, it's Little Wonder, that you are Still Suffering from the Original Damage. For this reason alone, you Need NOT 'Apologise', for your Continuing Problems, my friend, I'm certain that you DIDN'T Deliberately fall 30- or more- Feet, in your Accident- you, Most Likely, Lost your Footing or Slipped in some way. (though, just maybe, a Support Broke).
Believe me, when I tell you that Every One Of Us- On Here- Is In The Same Boat, As Yourself Rob. Most, if not all, of us 'learn to compensate' - you hear yourself saying, things like "Oh my days, what a 'Twit' I have been.... fancy forgetting That..... I think I need Shooting!"
Thank you Andrew, that is the best explanation about my struggle with my head injury I've read. It puts things into such clear perspective, I hope you don't mind but I'll be using that analogy when describing the troubles I'm experiencingin the future.
I'm just starting to emerge from the self imposed bubble I've put myself in, to experiencing the vast network of understanding and help that is around from people who have experienced similarities to myself.
I may have a bust Commodore 64 motherboard in the age of the super computers, but its doing a fine job when cared for properly.
I'm guessing the lack of access to neuro specialists has deprived you of an official diagnosis. Hopefully, in April, your ongoing struggles will be acknowledged as the lasting after-effects from your head trauma.
I believe that labelling, in your case, can demystify the challenges you still face, decades on from your injuries, and allow you 'permission' to refer to it openly if needed, and to live your life free of other people's expectations.
And let's hear no more of apologies or embarrassment .......your reason for being here is valid, and deserving of support. 😲🤨
Thanks Cat3, you're love and understanding always shines out of your posts.
I received the hospital transfer note from my initial hospital, which said I had a fracture of the paretial bone but no other trauma in brief. Think I was expecting more detail and thinking if that's all that happened maybe I'm just making a big deal of nothing.
It's a mind bending issue to get one's head around Rob - even for those who have clear details of the 'what & why'.
Mine, for instance, was a spontaneous brain haemorrhage and my family & I had the event, the treatment and the long term prognosis explained in detail by doctors.
But to have been left in the dark for 40 years is so, so sad ! I hope you're already coming to realise how brave you've been..... Cat x
dovrob - fortunate to me is not having a brain injury in the first place & having whatever is considered, in today's weird world, a normal healthy life? I had similar injuries but also got on with life best I could within a similar time frame by the sounds of it. As has been said, your brain was permanently damaged by that fall/injury and that's serious. Yes you can think that it could have been worse (as I do with my TBI) but it could also have been better. You are a survivor (victim) and can associate ongoing old and new issues with that devastating event so never feel sorry for that or that you need to apologise.
Thanks Trevor, like yourself I've been one of those that have just got on with things. Think last night was one of those times when tiredness just got the better of me and I decided a wee moan was in order. Sometimes just having a safe outlet for the frustration is great.
That's true. It can be quite therapeutic to construct some thoughts and go fishing in social media world. Chances are that you're not alone and someone will directly empathise with your situation/problems. Additionally you've potentially also clarified/solved some of your personal issues by constructing those thoughts - best wishes 👍
You don’t have to apologise or adjust. It is others who have to in order to accommodate your needs. Yes, you have put a brave face on it but there is no shame in asking for help if you need it.
Thanks Skulls, think the 'brave face' sometimes needs to slip and the real me get more exposure
It’s not a competition. If you are a Survivor, you are a Survivor. Coping well does not magic anything away. Find people who ‘get it’ and chat with them x
Thanks CripLady, as someone who has the habit of bottling things up, I'm finding the advantage of finally opening up to people who understand. I'm hoping to attend the Fife headway group shortly plus going to the Scottish head injury forum in December.
Good for you. Take it gently though, as group work can be emotionally gruelling as you face up to things you have been avoiding. But so revelatory too; you are no longer alone with things… many lightbulbs will come on.. 💡
I had a sub-arachnoid haemorrhage almost 4 years ago and this is something I am really struggling with - so much so that I am convinced none of my difficulties are even real. I’m seeing neuropsych and they want to repeat my cognitive function tests and I’m convinced they’re trying to prove I’m a fraud.
My neuropsych is telling me that this is wasting so much of my energy and probably adding to my fatigue. I just don’t know how to rationalise it.
So no, you’re not alone and I’m actually very relieved to discover that others think this way too.
Hi Hon33, it's amazing the additional torture we put ourselves through when we don't believe what we've been told and look for ways to torture ourselves to put ourselves in a guilty frame of mind.
I can agree with your neuropsych about how we waste so much energy when it's not a resource we have in abundance to begin with. Believing I am somehow a fraud is something I've grappled with in the past with no good reason apart from to further torture myself.
Maybe the cognitive functioning test will help you discover strengths you have and rather than a fraud help you understand that you are someone who needs specific help rather than just a one size fits all approach.
Thanks for your response and I wish you every success in the future.
I certainly get the imposter syndrome, particularly so long after the apparently mild TBI I had. But oddly enough, in the space of an actually very nice morning in church, I've had to carefully note down when I'm helping out tomorrow, so I don't forget, I totally lost the thread of what I'm saying because I got distracted by something else, conversation was a bit of a struggle, and it was a busy morning too, so the noise level in the church hall was quite tough to handle - it seemed a lot more than background noise. And I walked home, and that was quite hard because I was tired, but thought I needed the exercise, and now I've had to sit down for over an hour before I feel I can get my lunch - and I'm going to sleep afterwards.
So yes, I coped, I went to church and enjoyed it and meeting friends - and I feel like an imposter because I know people are in a far worse situation than me. But a bit of me can't understand why just going to church can seem like such a workout, four years after my accident.
Hi painting-girl. I can so understand your unwanted feeling of tiredness while completing daily activities. Like yourself I can find excessive noise and bustle so fatiguing, when before I excelled or maybe not excelled but not be the grumpy old man i now appear to turn into, haha.
Things would be so much easier, for other's and ourselves to understand I think, if our disability/ injury was visible but they are not yet every bit as real and relevant as a injury that is easily identifiable.
Thanks for your reply and keep going forward we are not alone.
I am another one with imposter syndrome. I was in a bike v car accident 6 years ago. Due to the number of orthopaedic injuries there was no mention of a head injury despite me not having any memory of the accident or for 48 hours afterwards and the multiple skull fractures I sustained. I put my lack of memory post accident to drugs, anaesthetic etc. I returned to work and put my tiredness down to the number of fractures and operations I had. But the fatigue continued. It was by accident that someone suggested a brain injury and then it fell into place. However, it then took 5 years for a diagnosis. I do the same job and generally function well, but I have learnt to manage my symptoms and fatigue and use strategies for help me remember things. Due to the length of time to get a diagnosis and because I work in the same job I suffer badly from imposter syndrome. I cannot live the life that I did pre-accident as I just get too tired. I have to be organised and I need routine to the extent that work is easier than holidays. I cannot be in busy or noisy places without the fatigue taking over. On a good day I will convince myself that it was all in my imagination. The hidden nature of brain injury and the learnt coping strategies make imposter syndrome very real.
Hi Binjour, Great to hear you finally got a diagnosis, though it sounds horrific going that time with various symptoms and having to find your own explanation for them. Strangely enough I'm not sure if I've ever had an official diagnosis of brain injury; the injury is very real just never noticed a bit of paper saying that it is.
Well hopefully my long-awaited appointment with a neurologist in April '23, hopefully, will let me answer some questions, but then it may open more doubts in my ever maddening brain.
thanks for your reply and i wish you every success and peace in the future.
Wow. How did they not put 2 and 2 together and follow that up? If you read the Headway literature (and I have many times over the last 20 years for work & benefit claim purposes) those are classic symptoms of the many many TBI effects that one might get. Coping strategies, familiarity, organisation & structure cover many of the new skills that we may need to develop/use. Your personal description could be me in some respects, although I didn't/don't get overly tired. I get anticipatory anxiety which makes saying yes to anything social that is new a no go area unless someone else takes the lead. I get very irritated by what many would say are insignificant noises. For instance, someone banging a door, playing loudish music, or just coughing too much will make my blood boil and I'd have to do something about it if it doesn't stop. That is all brain injury induced so never think that it's your imagination or that you're an imposter (as the thread title says).
It is unbelievable how shoddy your initial care was! How the blazes was a potential TBI not followed up after multiple skull fractures! There must have been a team of muppet doctors on duty…. You got there in the end but only through your own efforts.
Hi there dovrob please don't beat yourself over something you couldn't have prevented some people have long life complications I my self have short term memory lost after a brain haemorrhage just over 10 years ago and I was lucky my wife was there for me ! You seem to be living in the past have you thought about getting some councilling we are lucky in the uk that we have the NHS so seek out the help you need and ask your doctor what he feels you need ! I wish you all the best my friend !
Hi Celtic27 and thanks for your response. Sometimes i certainly live in the past, other times well into the unknown future, just trying to round myself and live in the present.
Well this is interesting, maybe we all wonder whether we're a "proper" TBI person or not? I certainly do and am mindful that to others I can seem fine. What they don't realise though is how hard I'm working to just be present and fine. I suppose it's nice knowing others feel the same. I am quite alarmed though that so many say they still notice symptoms for so long afterwards. I'm only 1.5yrs after diffuse axonal TBI and really want it all to go away.
Thanks for your useful contribution a_n_w. I can certainly identify with the hard work you are doing behind the scenes as it were to appear 'normal'.In regard to symptoms years after an event; some may get them while others do not. An often quoted expression I've been hearing is' If you've seen one head injury.....you've seen one head unjury'. Each one is uniquie and although something may happen to someone with a similar injury; it doesn't mean it will happen to you.
I thought my only residue from my t.b.i. was double vision and a slight limp. Though my mind is a master of denial and misplaced thoughts. Only recently since changing jobs dud I start appreciating that there may be cognative and behavioural hangovers from my fall. Ended up chucking the job due to stress and being unable to follow simple instructions while multi-tasking on 3 screens and a phone. I wish you continual health and a symtom.free life
I am another one with imposter syndrome here. I always think I should just shut up and get on with it, other people have their own problems they don't need to hear about mine.
Other peoples TBIs are much worse than mine so I should be greatful.
hi bushman1926; thanks for your reply and I don't think you should shut up. What I am learning is that we all have our own individual problems and that each one is important to ourselves at least. And that's one of the most important things, that is so easy to forget- we have to put our own wellbeing first so if need be, we can care for others.
One thing I'm learning is, how therapeutic it is to talk with others. A T.B.I. can be a very lonely experience at times, with only yourself to talk to and discuss concerns, in your head. that's why I've started using this message board to discuss what's going on in my mind and get a more rounded view.
Dear dovrob I think you are very stoic and have no need to apologise. My brain injury was due to a stroke 29 years ago so not sure I can help in any way except to say that like you I have had to get on with my life as a disabled person. Life can be very cruel and tough but we have both survived and despite challenges prefer to have survived than the alternative. I believe you are interested to know of experiences regarding physiotherapy. Mine was good in the beginning but after the first two years it was very sporadic and was really up to me and my husband to find and fund treatment. I have had physio for other problems since then and do know of a very good physio in Yateley, Surrey but don't know if that is useful to you or not. Stay strong and don't apologise for your situation - it's nobody's fault. Keep fighting.
Hi pinkspeniel123 and thanks for your reply and your nice words. Have to agree with you, yes life can be tough but getting through it is certainly worthwhile.
Most probably a physiotherapist would have a very positive effect on my old and stiff limbs, When I was much younger and going through sessions to help me walk again i wasn't the keenest of student and age has made my laziness much worse haha. Thanks for your suggestion, though I believe Surrey is a wee bit too far for commuting from Fife.
Having survived 29 years with your disabilities, demonstrates to me that this isn't a quick fix strategy and as the years progress our concerns and knowledge about what we've been through alters and solutions or new problems present themselves.
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