Isolation, loss of confidence, self esteem and dignity are some of the the things that are the outcome of my brain injury.
I've realised that it's usually people who have brain injury, or its their families who research and access information about brain injury, which is great.
But brain injury doesn't go away in front of your friends or colleagues or employers or the general public.
So I'm going to do my bit to raise awareness and understanding about brain injury.
I've contacted lots of media companies, NHS Trusts, Headway (obviously), Stroke supports and I've made a video which I've broken into smaller chunks for easier access.
The videos are on YouTube.
I've never done anything like this before. It's all very scary.
Last night I made a Facebook page called 'My Life Changing Brain Injury and Experiences'
Not only are my Facebook 'friends' more aware (their words) but even people I don't know are liking the page and sharing it.
I'm exhausted. Overwhelmed. Very proud.
Awareness communication and understanding (with lots of rest and sleep!) and the world can be given the same opportunity to become as aware and understanding about brain injury as they are about cancer and mental health.
What do you guys think?
Written by
MedicalAngel
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I think you deserve a virtual (and actual) pat on the back Angel. We've just had James's (Skipper's) BBC documentary, so yours is another serious attempt at getting bi issues out into the public domain.
Is the search title the same for YouTube as for Facebook as that's where I'd be viewing it ?
Well done again, and I'm not surprised you're feeling exhausted and proud...................I wouldn't know where to start !
Good grief Angel, that was quite a marathon and I can understand how it exhausted you. Thank you for an honest and heartfelt account of your aneurism & bleed, and their after-effects.
I was on the edge of my seat because I identified with so much of your story (except for the craniotomy)................the lack of verbal inhibition after surgery, the awful sadness when realising what loved ones went through, the hurt at being perceived as 'fine' despite the daily struggle, the awful sensory overload of TV & conversation, etc, etc .................
It was plain to see that you were overwhelmed at times, but then after composing yourself there would often follow some zany comment to make us smile. I especially liked the first 'photo' of you ; just brilliant.
And the line about recovery..... 'It takes as long as it takes'........ has simplified all the need for rambling descriptions about the variations in recovery periods.
Well done Angel and, as the summer progresses, I hope the orange flower develops into full bloom !!
This is really called for and all hats off to you for actually doing it. I must admit that it was something I felt very passionately about and contacted headway and the brain & spine foundation but no funding was available. So it makes this even more special and I must thank you. I have not seen your u tube videos as yet but will be able to have a look at them later this evening.
Look fwrd to viewing your videos later and all the best for your future endevours. If we can be of any help too do let us know.
I"ve just sat and watched your videos I can associate so much with a lot in what you have said especially the craniotomy.
It was funny when you mentioned the emotional side do you explain before or just carry on and see people's reaction(me not being a very emotional person before) even now at times 2 years on I still get like it which bloody annoys me at times.
I also make humour of some situations ,infact when my head was shaved for the op all i worried about at first what if my hair doesn't grow back.
In fact after the op and weeks later while still in hospital my hair was knotted and dark coloured so got my hairdresser friend to cut it short in the ward toilet which was funny having to put my head in a position so we wouldn't get any hair in the scar but we managed it.
So now I'm proud of my funky grey/highlighted hair and even have it shaved underneath for a modern look by the way ,only yesterday had some purple tips up in don't know what work with think of it when i go in on Monday...
Can't wait to see your next videos and a brilliant commentary on all you have just made it really says it as it is and that is what people need to hear even though everyone's recovery is different its real!!!!
Thanks for making me laugh and cry at the same time
Well, it's silly o'clock AM ! After a little sleep recharge I finally got my nice quiet slot to watch your videos.I am in awe. A brave,honest and emotional journey.
There is much that I can identify with, even though my own problems are from such a different reason.I jotted points while listening !
In your pre op video you mention the need for knowledge of your condition yet at the same time shying away from reading too much about it.I am a big believer that knowledge is power yet too much too soon,before you are ready can definitely make the problem feel worse. I have read about the bone flap sometimes being inserted into the abdomen to keep it healthy.It must be a very disconcerting feeling knowing that a piece of 'head armour' is missing and currently residing elsewhere.
Noticed the big 'no bone' sign on the bandage !
I empathise completely with the exhaustion of early recovery.Life did feel like a rude bucket of sensory overload in the face for me for quite some time, still can at times-sleep was definitely my forte !
Fatigue.Yes, still battling this one ! I thought at first that I could physio my way out of spasticity/fatigue and force things to re route and work correctly. No go ! Looks like it will go at it's own speed. I am resigned to pacing and accepting payback when I misbehave and overdo : )
It is so hard to go from Duracell battery pre illness to flat battery after only a few activities.The head or 'thought' fatigue is still the hardest one for me to comprehend
and takes me by surprise even now.
Invisible disability. I fully agree with your feelings on this.What you can see with me is a degree of aukward movement. Visual clues- hopefully allowances made. What you don't see is the short term memory,concentration etc. unless it makes itself apparent in a social situation !
Thanks so much for sharing your story to all,
I am rather inclined to rename you Medical Marvel ! : ))
Well Angela, you're ahead of me. I've NEVER heard of the bone-flap being stored inside the abdomen. After 3+ years I'm still being gobsmacked by BI procedures, and this has just gone way up to the top of my list !!
Sorry Angel, I meant to ask about it earlier but, like most others here, things often slip my mind. It's a relief to know it's now back where it belongs. xxx
A few people had posted about various Cranio procedures and I wanted to know the difference between Craniotomy,ectomy and plasty so I went scouting ! Read it on here :
"Isolation, loss of confidence, self esteem and dignity "
Well put; I can identify with all of that.
Wish you'd posted early you could of saved me some money recently
I can't mix, not sure of myself in company and its only in the last few years I don't care if anyone sees the massive scar across my forehead, it's travel across my bonce and its end above my left ear. I've even been asked why my head has dents in it and I'll now reveal why to anyone who asks.
I paid for a private psychological assessment last year - I learnt what I already knew: 'Socially and sexually lonely.' I asked what can I do and I was told to make friends. These people either don't listen or are stupid and to think I paid for that!
Thank you oodles for watching the videos and feeding back about them. It means ever such a lot xx
Have you got a Headway group near you? If so maybe gently introduce yourself and start to build your confidence & self esteem there to 'make friends'. xx
I have attended two Headway Groups and both were closed down. The one nearest to me is as difficult to get to as the furthest and I don't like traveling at night. The two that shut were afternoon groups and worth attending.
Brilliant, CONGRATS!!! Well done for doing this. How on earth did you manage to organise it so well? (I can't).I've only watched part one so far...
I am TOTALLY shocked that they gave you your results via a phonecall, I'm gobsmacked that ANY doc/hospital would DO that.
It's so obvious that you needed lots of info, to be able to ask questions, get advice and so on. How DARE they not give you that? Cruel.
And then the first surgeon who had no empathy or understanding/compassion = did you feed back about him/her? Tell them WHY you made sure saw different doc after? Did they ever ASK for feedback? I think all docs/hospitals/trades SHOULD. And EASY way to try put things right and say sorry and LEARN from your experience.
That's what people/bodies/companies do who WANT to learn and improve!
And would it have helped to have been given lots of printed info to read, advice, people's various experiences - or not coz we're all so different, but lots similar stuff?
Hi. I didn't catch your name and find following things on the Internet on my phone really difficult, after my own brain aneurysm, compounded by a negligent eye operation that has left me partially sighted too.
I applaud your courage and tenacity. Well done you. I am finding my isolation and corresponding loss of confidence and mental abilities life destroying. My local Headway group can offer nothing better than to tell me to rest. I know that. I could sleep for England. But after 18 months I just want to give up and never wake up. Can I email you please or would you email me if I send my mail address? I need to talk with someone who understands first hand what it's like.
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