Blog - Life After A Brain Injury

[ashj]

I've started a blog, telling the story of life after my brain injury. Here's the preface and first part t.co/TPf2ChGWrJ

I'm going to write the story over 15 or so parts, posting 2 parts each week.

[Hidden]

Hi Ash. Just read Pt 1 and will keep my eyes peeled for Pt 2. You are right, you have captured the confusion of those first days of being aware that something is not quite right. Seems to me you were discharged way too soon and have not had anything like enough support, counselling and follow up. The NHS saved my life and ward staff were wonderfully compassionate but then, once you leave you are pretty much left to seek out support and that needs to change because sending a brain injured person out on their own (in some cases) with no support and realistic warnings of how life may change, is like sending a baby wandering out on to a railway line. This is why so many of us end up depressed, marriages break up and there are often years of unecessary stress which could have been avoided with really good aftercare.

Ok, off to work. Luckily I can do that now, if only part time. Happy Tuesday, all

[Writer52]

An amazing story dear Ash and glad that you are here to tell your tale - all be it sadly harrowing.

I hope you are progressing well - you write beautifully and blogging is such a great way to get your story ' out there ' and to share your experiences with others and help bring about a clearer understanding of BI.

I look forward to reading the next parts.

Happy summer days

Ax

[ashj]

Next part of the blog is now up

medium.com/p/f4f4c94ae338

[ashj]

I've posted a new update to my blog

medium.com/@realashjones/li...

[ashj]

Latest update now posted

medium.com/@realashjones/li...

[EleanorS]

Well said indeed Ash. I especially commend this blog entry. Kind regards.

[EleanorS]

Hello Ash

my response would be to think of punching the place where your car impacted, because ofthe reasons you have outlined to do with litigation process. it can mess with a non brain injured mind. but, most unlike myself you have communicated everything spot on, communicated how you dealt with everything as well as being brain injured.

( i look at life differently now and think its not peoples crap that matters, its not money, its not having things, its not even what you have to contend with, what matters is life itself, in the smallest ways; the appreciation of life in the smallest ways where you can find it. sorry again about this long winded and slightly bonkers response. hope you do have a peaceful chilled out weekend.

[ashj]

New update posted today

medium.com/@realashjones/li...

[EleanorS]

i m not really neatly summing up my response Ash.

I experienced a little paranoia also to begin with. i'd guess in yourself that this might have had a fair amount to do with what you went over in your last update, and your brain possibly was re- set/re -programmed to be on guard.

i beg to differ but, i think that one person i know personally would inisist that there is some cross over with brain injury and aspergers, paranoia can be a feature of ASD.

my ex was long gone before brain injury. some of my close family instantly adapted to my new personality, and some didn;t. i think that that was thought provoking when you went into a little bit of detail about separation, and you were magnanimous or philosophical (probably the wrong words).

in no way shape or form do i see your recounting of events as a story of you getting things wrong. Just for a start no help or advice and thrown back into a competitive work situation, i cant imagine it.

i didnt realise that the frontal lobes contain our personalities.

i guess id have to ask a third party how my personality has changed, there was a marked change, and i dont think that my family knew what to think. i think i imght have been very strong willed immediately post BI , (maybe thats common) i emerged form it very 'happy' laughing at things that werent funny (probably quite uncommon), but most of all i was very obviously brain injured in the way i came across. . . . .didnt mean to ramble on.

take care

[ashj]

Hi folks, I've just posted the latest update

medium.com/@realashjones/li...

[EleanorS in reply to ashj]

oh my goodness, theres nothing to worry about there. i certainly cant see that your nose was in the wrong place. well written interesting informative and amusing account though, and anyone can surely understand you feeling self conscious if you thought something wasnt quite right beforehand. how a face can change with brain injury is only superficial i dont worry about whats happened to me either, my left eyeball has shrank (there was quite a bit of damage to my eyes having been temporarily blind), my left eyelid droops, but honest to god i never even think about it. my mother said you do know youve got one one eye bigger than the other now dont you? i know someone whose face was quite re-modeled, he has a metal plate. i never think about how his face has changed. and i just thought i am not saying this to try and draw some comparisons, i dont know what i'm trying to say by that. but, a good update Ash.

[ashj in reply to EleanorS]

Thanks Eleanor.

Don't forget this is a recollection of how I was feeling at the time. The blog is up to Jan 2014 at the moment and how I looked to me in the mirror and how I must have looked to my ex-wife was a really big thing at the time. I looked different and didn't look like me. Add to that my brain made my personality not like me too and it all starts to add-up.

Take care

[aqua4]

Hi Ashj. Glad you are able to tell your story. Awareness. I identify. Left hospital, no information, aftercare. Thanks. Sorry not as many words. K

[ashj in reply to aqua4]

That's interesting!

Sometimes I can begin to write an email reply with short sentences like that but then I realise it might come across as being short an snappy with the person so I have to concentrate on rewording so it comes across more fluently.

I think this might happen when I'm tired so I wonder if you are tired now?

[EleanorS in reply to aqua4]

Of course, of course. Something has changed with myself but I wouldn't hav e the guts to talk about it. What you are referring to must have been quite something. It's nice to see that youve come through that. Sorry I don't choose the right words a fair amount. Take care also.

[ashj]

Eleanor, Aqua

None of us should be apologising for how we come across. We're not fully in control of our brains

[ashj]

Hi Folks

Latest update just posted

medium.com/@realashjones/li...

I have realised I missed a couple of links around parts 5&6 on the blog but I've fixed that now. If you go to my profile on Medium then you can find all of the parts of the blog so far, here's the link to the profile medium.com/@realashjones

[ashj]

Sorry it's late but here's the latest update medium.com/@realashjones/li...

[EleanorS]

Thankyou Ash.

(i think i just put 2 and 2 together yesterday that as well as me having obvious cerebellar injury, and part sof the brain that connect to the cerebellum, i also must have frontal lobe injury. my symptoms are a set of words that i constantly repaeat inside my head on a circuit. i think that certain repetitious behavours can be symptomatic of frontal lobe injury.( i have a different setof words that i say out loud like non swearing tourettes each day).

another symptom of frontal lobe injury i think , is challenges in moving from one train of thought to the next, or challenges in moving from one task to the next, as i can experience getting stuck so to speak in both.

yourself and a couple of other people have made me aware of frontal lobe injury, and i will make sure that i am properly neurologically assessed now, and that it is all documented.

i know that you havent mentioned these particular symptoms, but as regards other things it is good to see ahhhh thats not just me then who can experience such things.

this is very useful for when i come to fill in disabilty forms, and is very useful for me to know what to say in relation to a potential medical negligence case.

all the best

[ashj in reply to EleanorS]

Hi Eleanor

I don't know much about the repetitive words but I do have difficulty with Task Switching like you, so the way that I cope with that is to do one thing at a time. There's nothing wrong with doing one thing at a time and I will be very accurate or thorough when I can work this way. If I try two things then I'll be really slow overal because it's the switching back and forth that I find difficult.

To get the assessment I had to kick-off the process by going to my GP and asking for referral to a Clinical Psychologist. You firstly have to go and see a Neurologist so this is who your GP will refer you to and it's the neurologist who will arrange any MRI scans and the assessment by the Clinical Psychologist.

I have a four page report from my assessment which spells out my problem areas so now I know what I have to practice and improve on, as well as knowing what kind of behaviour I need to be careful about such as being too fast to give an opinion, to slow down and think about it first, form in my head (or maybe even write it down first) an opinion that's not too blunt or argumentative and only then offer my point of view.

It sounds like you are going in the right direction by wanting be assessed so well done for that. Are you also going to get in touch with our local Headway? The meetings we have are in Reading and I think that would be a good location for you.

Take care Eleanor.

[EleanorS]

thankyou Ash for the information, i will send a message

[ashj]

The penultimate part of the blog has just been posted. medium.com/@realashjones/li...

[ashj]

I've just posted the final part of the blog here medium.com/@realashjones/li...

[EleanorS]

Hello Ash

That was a brilliant read; i was welling up also at the spitfire. I wish you all the very best for Sweden.

So sorry I'm not best coherent atm, busy head, brain fatigue insomnia and headache for a month, plus plus, but piffle.

I think I will say that you will see yet more improvements in year three, I reckon the two year rule is a bit old hat.

Well here's to Warwick castle and here's to Sweden , my word, perhaps you have inherited your grandfathers guts and clarity of thought.

with that in mind I bid you good evening. Thankyou again for communicating everything that you have and with clarity. All the best again.

[ashj]

Hi Eleanor

What's the 2 year rule? Somebody has mentioned this before but I can't remember.

I'll still be posting on here, so the blog is complete for now but I'm still around.

[EleanorS]

Ok, good to know

If you google 'headway recovery after brain injury' and scroll to timescales it has a little bit of info there. a friend said to me that the improvements that can be made in year three are dependant on the work a person puts in. my neurologist said i was as normal as i was gonna get 2 years post injury but this is old thinking , i have improved in year 3 and i didnt put much conscious effort in , just had more mentally taxing things to do than before.

I have had a headache for a month with no break and i can only sleep for 3 hour stretches with it . Every time i put my head down the headache is worse so i sleep sitting up. I reckon it will go soon, i had this before, so not to worry but not functioning awfully well, still not to worry.

Good luck in sweden , wow. Stay safe.