Background: Road traffic accident March 2014, I sustained a diffuse axonal injury. BI not initially picked up on CT scan, it was only picked up a couple days later through MRI scan during hospital stay (I was in hospital for 2 weeks). I was told by my family that I looked as though I was on drugs (my pupils were majorly dilated, I felt( the only way I have ever been able to describe it) as though I were drunk. Retrograde amnesia - I have no memory of the day of the accident except for one tiny snippet of pulling into petrol station some 30 mins before accident and that I would most likely never regain the lost memory (bonus...I don't want it!)
I was told that I would get better but it would take time. I was told by a neurologist in March 2015 (one year after accident) that in his opinion I would probably by back to 100% after another 12 months.
I feel that my recovery was quite steady and progressive especially the first year. However, I feel as though I am not there yet. I still get, what I call "funny head days". Trying to explain it to people is frustrating because how do you put it into words?! As well as memory problems when I have a funny head day I feel lightheaded, dizzy, drained, sometimes when I am standing speaking to someone I feel so wiped out and think to myself "I really can't be bothered standing here talking to you, I just want to go lie down"....and it frustrates me when people say "but I can feel like that at times...it doesn't mean its from the brain injury". I get so deflated/annoyed/frustrated!!
All the way through the accident I have always been of the view that it could have been a hell of a lot worse...because it could have!! I work in the legal sector and a lot of my work load involves road traffic law and so I see how some people are left as a result of injuries (if not fatalities!)...a little perspective goes a long way!
But as the time is passing and I still have memory problems and the funny head days I feel I have more questions now....like "Am I going to be like this forever?" (if so, fine, I will adjust...I just want to know).
I guess the whole point of this post is to ask...can you relate to this? Do you have these symptoms and also get frustrated if someone tells you that your sore head/memory issue/faint head/dizzy head etc could be normal...that "normal" people get these issues too?
I know that some people are coming from a good place and just don't want you to dwell/get stressed about the injury and the effect it has...but what they don't realise is that its more stressful when they do this because its frustrating when they don't understand or dismiss...especially when YOU know that you have a BI...but you're okay with that, you've accepted it (as much as you are able to accept it) cos we know we have to be okay!!
Also - I would like to say that I only really accepted that I had a BI in the past few months when I was finding out a little more information on diffuse axonal injury. I think there should be more help and information for people when they receive a BI.
Sorry for the long post guys! lol
Written by
debs-86
To view profiles and participate in discussions please or .
Just wanted to say that none of us ever know if this is "normal" or will be forever ...... I know I'm not the same person I was before BI - and have been through some extremely tough times in the ( is it really) almost 2 years - but none of us have parallel lives - whether that is with or without BI ... we only have the one we have in front of us right now .
I suspect that I used to be one of the people who would say to others " yeah, I do forget things too" and " I'm tired all the time as well" - because it was true ... I did and I was - but I don't have a pre BI version of me running alongside me now to compare ..... I don't think they are being deliberately dismissive - but they just haven't been through what we have to be able to know the difference ...
But in any event I've tried ( not always successfully) to concentrate on the here and now - what can I do today ? What can I plan for tomorrow ? How can I be as well as I can ..... eat well, sleep well, see friends, working part time at present, plan some nice things and plan some rest times.
Hi Debs... I could scream every time someone times me "oh we all forget things...why only last week I......"
I used to want to try to explain to them that this is different from going upstairs for something and not remembering why or forgetting where you put your keys.... that I can stand under the shower for ages and end up crying because I cannot for the life of me remember or figure out how to stop the wet stuff from falling on me, ( wet stuff is water and I need to hit the stop button to turn off the shower, but in that moment all of that is gone) or that I can't remember what I had for breakfast or if I even had breakfast, or the sheer terror that hits when I find myself out somewhere and I do not recall where I am, how I got there or where I am supposed to be or how to get home again...that I put down the phone and instantly forget that there was a call, who it was, if I called them or they called me and why....I start conversations that I never finish, get stuck on simple word finding and am always surprised when someone asks me what did you say?" because as soon as the words left my mouth I forgot I even said anything... but yep, everyone forgets stuff
Initially I wanted to hide because I didn't understand they what and why of what was happening to me and I felt if anyone found out what a mess I was they would be as horrified as I was...but once I got to grips with the whole BI thing I found I wanted to explain to people why I was the way I was... and then I realised that generally people don't give a hoot. They expect certain things of others in daily life, when they ask "how are you?" they expect you to say "fine thanks" or "not too bad thanks"...they do not really want to know how you are... just as they do not care to hear us put things down to our BI.
10 years on from my BI I no longer give a hoot about what anyone thinks and I don't have the desire to explain myself. I accept things just as they are, for what they are and I am no longer focussed on my BI. I am me and this is life... but that is 10 years in and when I was at your stage I was asking the very same questions...
You will discover your "new normal" in time and you will adjust...it is what we do....in the meantime all you can do is just take it day by day
I almost want to say lucky you having 2whole weeks in hospital.
3 months after my fall I couldn't stand the pain any longer and light was excruciating. I went to an optician who wrote a letter to the GP saying I was photophobic and had non responsive pupils.
Presenting the GP with this letter when I was mid one of the 'bad' heads and could hardly walk and speech was diabolical. The GP tore up the letter and referred me for an MRI.
Enough of that.
Congratulations on your acceptance of your bi many people just can't get there.
You have reached the point where most of the improvement has happened but more is still possible.
Once you have a bi you have it for life. The brain isn't capable of self repair but it is phenomenal at rewiring and rerouting. Unfortunately for many of us that leaves us with increased levels of fatigue as we spend more brain energy doing that.
Top tips for coping are........ hydration, avoid caffeine (do a little and rest and repeat) pacing.
Again welcome and look forward to hearing more from you in the future.
I also had a diffuse injury in 2004. I still get days when I can't get quite think like I used to, can't find the right word so use explanations , feel drained and over emotional. I'm like this when I don't get enough sleep or when I'm ill, when I'm stressed, when the work load increases, when I'm in pain....etc etc etc.
I find it difficult to multitask, I never remember where I'm supposed to be and when. It's just the way it is and I'm learning to live with it.
I guess this is now your new 'normal' ! You seem to be coping well in spite of the odd annoying person who tries to tell you they get all these symptoms too ! I'm sure they would be down at their GP's if they truly experienced such things regularly without any explanation !
With brain injury, there is this 2 year loose 'rule' theory of you will have healed as much as you can by the 2 year mark - not strictly true.The brain never stops trying to reroute it's pathways to make new connections - progress may be much slower but improvements are still up for grabs ! : )
You sound like you suffer from fatigue - I recognise the 'I need to go lie down NOW !' scenario : ) All in all, you have done really well, back at work and getting on with life with a positive attitude. Do try to remember to pace, not overdo and cram too much into every day without allowing rest breaks. For special occasions/events I want to attend, I try to plan some rest time beforehand and allow some more recuperation/rest time afterwards, as I know I will get 'payback' ( worsening of symptoms/fatigue ) and be useless for a while after a busy time : ) Sleep is such a wonderful phenomenon ! : ))
I'm roughly 18 months post-BI, and most of the time, nobody knows I had the ruptured aneurysm, or the second one coiled in March of this year, or the third one, that's just lurking in there until it's considered large/impactive enough for surgery. Like you, I'm back at work, so do occasionally feel a bit 'rude' moaning on here, because some people aren't able to work again.
Brains are fabulous, fantastic, frustrating things, but I REALLY struggle with the words 'repair' and 'recover' in relation to this process of adaptation to having a brain with bits of metal in it, where there wasn't any metal before. I analogised on another thread that expecting a damaged brain to go back to 'normal' is like trying to fix a NASA space-craft, by thumping it on the side, like it's a clapped-out washing machine. Brains are more complicated than that, and there are bound to be 'glitches' from the damaged-area-re-routing.
The shut down/lie down thing sounds very much like cognitive fatigue, many of us are more familiar with that than we'd like to be. For me, my brain does something similar to an over-tired toddler in a supermarket, that thing where they sprawl on the floor in the middle of an aisle, and tantrum if you try to move them... not fun.
I'd like to say that you can avoid the dreaded fatigue with the right diet, exercise, and sleep-pattern, but, in my experience, it does as it pleases. Your brain used to be able to fire electrical messages along clear pathways, but now there is an 'obstruction', the re-routing takes effort, so occasionally (Yes, SOMETIMES it's stress, or 'over-doing it'), the brain just decides 'No.' For me, I've had to work out safe-exit strategies for if I 'fog' at work, because, in that state, I'm not safe to make decisions. (Sometimes I'm not safe to put my own shoes on...) If I 'fog' at home, I just remove myself, and wait it out.
This isn't necessarily your 'normal' now, there's a huge (QI klaxon) 'Nobody knows' about brain injury, there may be more changes, and adaptations, might be worth asking your GP for a referral to neuro-psychology? (Not saying you 'need' a psychologist, it's just that my neuro-ppsych was able to contextualise some of the difficulties I was having at roughly 12 months, which helped me to overcome some of them.)
Gaia, please don't ever feel you are being 'rude' coming on here with issues, even though you are able to work. We are all at different levels - some unable to work, some able to do a little work ( myself ! ), some that would love to work but can't get the breaks ( also me but the 'commercial world won't have me ! ),some that would love to work but know it would ultimately be detrimental to their wellbeing etc. Going back to work doesn't mean we are necessarily 'all better', it is more often a case of reaching a reasonable compromise and adapting to our remaining ongoing problems. x
I understand that, I just feel a bit strange sitting here typing about the impacts of three rounds of brain surgery in just over a year when I 'appear' so functional. I know I'm compromising my overall wellbeing by working full-time, and working hard, but it's the only option, being too functional for PIP, which would have enabled me to cut my hours...
We get by in our different ways, thank you for the support, Angela.
'Tis often the case that we 'appear' functional. It is like the old analogy about the swan, serene and graceful on the surface but paddling for dear life underneath !
Have you looked into other possible benefits you may be entitled to if you had to cut your hours - council tax reduction, housing benefit,working tax credit etc ? Maybe PIP is not the only way. x
My earnings are over threshold for tax credits, and I already have the 25% single-occupant discount on the council tax... I don't think cutting my hours to be eligible for tax credits would work, it's a big mess, so I just resign myself to being profoundly exhausted at the weekends.
I am like a swan, not graceful and elegant, but perpetually angry, and there's a rumour I could break a man's arm, though nobody's ever seen me do it. X
Personally, on an emotional level, I don't think that I could have another person in 'my' space. I'm only just barely holding my temper at having to step-around the boy's mess. He's not dirty, just really disorganised, and tends to just 'leave' stuff wherever he was when he finished with it.
I'm not going to be destitute, the income/expenditure does work out on paper, I'm just going to have to be careful. X
Hehe, the boy, when he goes to Uni next week, is going to have more disposable income than me! (Due to me being a single parent now, he qualified for the maintenance loan, and his Dad is going to pay the grocery money he was paying to me, for the boy, directly to the boy.)
Thank you for all your responses. You have all been so helpful and kind. It's good knowing there are others out there that feel the same way! I'm sorry I haven't been online much to respond, I just have a lot on right now (which doesn't help matters...but, hey I'm stubborn that way!). Gaia, I have been assessed by a neuro-psychologist, and to be honest he just left me with more unanswered questions. The main one being if/when I qualify as a solicitor will I be able to do the hours and work that is going to be expected of me?? He suggested that it may be the case that I can technically do the hours, but I might not have a life outside of work as I could end up totally wiped out and recuperating on my days off! Even now I have to try and have a nap during the day and if I don't then after a few days I just crash and will sleep a whole afternoon! I have an appointment with a neurologist next week and will be putting all my questions and points to him (making sure I write them down beforehand...ain't memory problems just fun?!) to ask if there is anything I, myself, can do to alleviate these niggles or if there is anything further medically that can be done (although I highly doubt the latter!).
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.
An Untreated Brain Injury
Stimulating the mind of someone with brain injury
