Like most of us I have struggled with some friends and family thinking "You look ok? where's the problem?" and why can't you go back to work. Well last night the penny finally dropped with a friend and ex work colleague.
We were talking about the forthcoming and 6N rugby and the usual banter between my English friend and myself being Welsh. The conversation drifted towards the new England captain Dylan Hartley and his poor discipline record. I mentioned about the similarity and differences between him, Lawrence Dallaglio and Martin Johnson. Then went on to say something about Clive Woodward and ..... couldn't remember Martin Johnson's name even though I had mentioned it in the previous sentence.
There was an awkward silence form my friend and quizzically asked "you can't remember what you just said?" There was complete amazement from my friend whom couldn't understand how i knew something a minute ago and then it was gone.
He was physically shocked and almost distressed when he realised the problems we get, especially over something so trivial. After many, many questions from my friends he must have taken about 30 minutes to recover.
At least one thing there is another convert in terms of understanding
Written by
sospan
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Great when that happens, being understood that is. One of the reasons I like going to the headway meetings.
Though the young work collages do understand that I'm different etc, tend to go the other way worried that I'll break etc. Most amusing offer to help me up if they are watching me ungainly get to my feet, bare in mind they a 7/8 stone wee lasses and I'm a foot taller, and best part of double there weight!
I notice these moments and have recognised in myself the reason why it happens. While I am speaking or performing the task, I have attempted and failed to do a dual processing task. The log of failure of the other task while speaking prevents me from using the current word circuitry immediately after. If on my own, to fix it, I make myself start again after chasing up manually the words I cant get. I start the same conversation in my own mind, use the same vocab, and emphasise the word I couldn't get. Basically rerunning the circuits and overwriting the error log. My early days left so many error logs that my communication was stutter and blank look along with slurred and odd words to describe commonly known objects. In the later part of recovery I pull myself up every time I cant get a word and this laborious task makes me pay attention to doing just one thing when I'm speaking to avoid the repetition I make myself do. This seems to work for me as my word recall and speech fluidity is good, and in situations of new vocabulary (unknown outcomes) I am able to stay in the present moment. Hope I'm making sense! I would also add (sounds odd) that when I finally started up my life again, got my paperwork in order, tidied the home and saw organisation around me, it helped my thinking.
Tidy home, tidy mind!
As for others understanding where I'm at, I can relate to your experience and so glad you have kind friends who are willing to step into your shoes a walk a mile : )
I can function better with no interruptions but not when to much is going off around me when I'm at work.
So my days of multi tasking is not good nowadays I go into brain overload and just go blank or as I say I'm going brain dead to much info!!!!
I work with the public in an airport so I actually end up telling them to listen and ask any questions after I've finished otherwise it completely throws me out.
All folks see is a shell which, in passing, looks absolutely fine. A well kept motor car looks good 'til you start the engine to find it misfires and the steering's all over the place, not to mention the on-board satnav sending you round in circles 'cause its memory's failed.
As in your story Sospan, for people we value & who bother to spend time with us, the cracks in our outward appearance show up sooner or later, so they don't need any convincing.
And when you're up against those who don't 'get' why you can't hold down a job, I'd ask them how much they actually know about the effects of brain damage.
Yeah we have had mostly understanding friends,my stepdad saw micheals scan pictures the other week ( he has them on disc) you can buy them from hospital.anyway,he saw them and said "wow! thats a quarter of youre brain!" he understood more in that in moment,bless him he did look shocked
I have my MRI scan of my brain and another set of my neck. I am not normally squeamish - I watched and chatted to the doctors when the sowed my fingers back on and did the same with knee surgery and also had the same view as the doctor through the keyhole camera.
I can look at the scan of my neck and see the broken bone and bulge without problem. But the one thing that really creeps me out is looking at those pictures of the MRI of my brian. squirming just writing this.
That's great to hear that someone understands eventually.
It's that we look ok from the outside so when we are having conversations they think we are ok.
Then in the next breath we can't recall a recent incident clearly.
So when having a conversation about something from years ago you can see sometimes the look on peoples faces how can she remember that so clear and yet not a recent conversation so clear!!!!!
I don't bother anymore with some people specially some I work with its wasting my breath trying to explain.
I just dont tell People about my Medical conditions any more i seem to find People just dont understand what its like to live with also i find it very very Hard to trust People unless they have a medical problem then it seems they can relate to what its like especially when i can be talking about something and just forget what i was on a bout instantly
I hate the moment the penny drops with them... there's the awkward silence and puzzled look as they gaze at you in confusion trying to reconcile the competent woman of two mins ago with the empty space out they caught...then the head tilt and overly bright smile or the flash of their back as they make excuses and run! Second week with a new team and had a meltdown today over absolutely nothing! Soul destroying! What can you do? If you fall, you drag yourself up. If you panic, you breath. If you survive, you smile! Where's to another day of pennies!
I really hate that moment too. So much in fact that I avoid telling people about my medical condition. I would love to be more open but just can't bring myself to do it.
For me it is the non sequiturs, the lack of logical progression in thought, as well as retention issues..an example yesterday: the way I complained to my OH when I arrived at the train station because a bus had just pulled out and 'I could have caught that instead' - but for the fact that it was going to Lincoln, not to the town where my hospital appointment was. So he looked at me and said, v gently, 'but you aren't going to Lincoln at the moment, are you? Not today,,,'
Or today, in town, having stopped for a coffee, and I look at him, mind a complete blank and say....'where did we put the car?'. Then when reminded, set off in completely the wrong direction until gently turned round.
On days like yesterday and today I begin to wonder if I am safe to let out on my own, but a bit like someone with early signs of dementia, I can be v good at hiding it, so only those who know me really well have any idea how completely messed up my brain can be at times. And overload, whether through fatigue or attempting to multi task as Rec H says, is a major part of it.
Do things like that above all the time. Last year my son's car had a problem and he asked me to take him to work. Not a problem but I stopped outside the school he went to 5 years ago and it was 7 o'clock at night. Doh!
This is so similar, can I ask you a random question? How can they identify what the cause is? I had RTA and they've been through TBI, stroke, post concussive, PTSD and general anxiety/stress as a result. But never said which part causes what. And does knowing help with solutions? I can feel the times I'm deteriorating because the words go, I forget what I was talking about mid sentence, start leaving the doors open more, misunderstand more, start panicking if I have to follow more than one thing or remember something out of order etc. Crashed and burned in new job this week, couldn't do stuff I knew 20 years ago, and trying to make sense of it to work my way through it was like understanding hieroglyphics. Today I realised my brain had gone into lock down and I hadn't realised until I noticed that I couldn't remember how to turn the computer on, left the tickets in the cinema machine, left freezer open then slept for almost 24 hours straight the minute I stopped. Is this stress or brain injury stuff? How do I tell? Should I be able to "just chill" and make it better?
The lapses in short term memory and my tendency to "shut down" suddenly have never been diagnosed fully. I get told that's part of your injury and that is the way it is
Do odd things all the time yesterday driving down the load couldn't work out for a few minutes which one as the indicator stalk and which was the wiper - had the car for over 2 years.
But doors were a nightmare for me for a long time. I would leave the front door open frequently but the worst was one day visiting my mother, she remarked how busy the traffic was outside - there were cars queuing in both directions even on her relatively quiet road.
When I went to have a closer look, I had left a car door open. Effectively blocking one side of the road
I have a sudden desire to post my story, 'Sunblock' again...
It's so hard to be understood and when the penny drops with an enormous 'clang!' it is a bittersweet victory. Comforting and distressing in equal measure.
Sadly I can entirely relate to everything you've said, and to all the other replies as well.
Due to the nature of my job I know a very large number of people. Five months since my accident and and I'm starting to go out, sometimes on my own, and have struggled with the number of people who's happy expressions have changed from 'Hi - how are you doing now?', to morbid curiosity, pity, embarrassment, speaking slowly to me, and classic..........speaking to my partner and pretending I'm not there. Things have changed in the last two weeks as I've become much more confident and my speech is speeding up a bit. But oh, the problems of looking normal nice problem to have I suppose.
Took my ex up until this year to finally realise and except I'm different (Feb 2009) I would say I'm sick of repeating myself but I can't remember doing it or as discussed just stopping mid sentence because I completely forgot what I was talking about even though it was the hot topic of conversation now what we talking about
sospan maybe now would be a good time to explain other problems you have.
i was smiling with a tear in my eye because that happensto me. then i try wordassociation charades and then change the subject if i cant tink about what i was going to say.
its quite normal me to be chatting and all of a sudden remember the word a couple of weeks on !!!
sorry to hear about your other illness.......get well soon nasty infection this welshinitis!!!......im irish by the way
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xx
nice problem to have I suppose. 
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