Headway
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Frustration

Does anyone else get so frustrated living with the effects of brain injury, that they'd rather just wish they'd died? I do, frequently :-(

I hope I don't offend anyone with his question. I'm just curious.

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Ohhhh my god yes. It does occur to me, but as the saying goes "you might as well live".

Chin up boyo.

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Not long after my BI when I first started going back to school, I would say things like, "I wish I died" or "I wish I never had the operation".

Now, it is a bit different. In some ways I am quite glad I had a BI.

A friend of mine says they believe good things come from bad things and I completely agree with her. I have met some lovely people because of my disability. I have had good, if nio, better things happen to me that I most probably would not have experienced if I never had a tumour on my brain stem that is amongst a spaghetti junction of nerves and the tumour calcified leading to further operations and more complications with my shunt.

I've pretty much been to hell and back but I expect most of us here have. One thing I have learnt through the process of having a BI is to be positive otherwise I find, life just gets/feels so much more worse.

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Yes I too, did n the earlier days, when I first realised this was for the rest of my life, and I was unlikely to become like I used to be.

However, I have learned to cope with the new me, I would find it easier if I didn't struggle with the weird way my head feels.

But forever onward xxxxx Janet

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Yes I to have felt that way at times . I am very happy to be here to see my children grow and get married. At the time when this happened I would have missed my sons graduation from university and my daughters from high school.

Still at times I get frustrated but the feeling goes away.

If you feel that way often there is never a problem getting help we have been thru a lot and sometimes it good to talk with a professional.

Prayers to you!

Niyani

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Yes I've felt like this I don't think anyone who's suffered what we have hasn't so your not alone I have a brilliant gp who has given me medication to help this is only short term to help me thru & I am attending a brain injury facility as an outpatient which helps me speak to ur gp who should help u I find I feel like this when my husband gets frustrated with all different depts & gets no where & I think it would b better if I had died Alan wouldn't be worrying about money with my works death in service payout but my husband gets upset when I talk like this truth be told I'm glad im not dead cos I'll get to see my son grow up & he means more 2 me than anything so 2 end speak 2 ur gp & focus on the positives we are extremely lucky 2 b here & u have 2 believe there will come a day where u'll b grateful 2 I wish u all the best in ur journey

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I never once wished I'd died, though I did feel incredibly sorry for myself for a very long time. Now, the warning, I'm about to start talking in cliches...

I'm not sure when, but one day everything just sort of, clicked. I'd always been aware that birds sang first thing in the morning but I'd never really heard them before. The sun has always shone but when I noticed the twittering of the feathered ones outside, I realised the beauty of that first sunlight of the day. I used to see it often, I barely slept in the early years.

And so it was that it was time to get off my mental arse and make things happen. I wrote, a lot. I got out as much as I could, tried to expose myself (no, not in that way) to as many people and places as I could in order to clamber out of the mental cocoon I'd built around myself.

It worked, to an extent. Some barriers are still there, they have to be; they'll remain there for as long as I live. But...

Twenty years later, I'm a survivor.

I'm brain injured, yes.

I have epilepsy, yes.

I have ongoing health 'issues' that will never change. Yes.

99% of the friends I had pre-accident have drifted away and distanced themselves from me. Yes.

However... I have a beautiful wife, two fantastic step children, I still write, and have had the occasional work published. I've met many, many lovely people and I'm happier than I've ever been.

Oh, and the sun still shines every morning and every bird singing is music to my ears.

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I agree Andy. Apparently, as I lost consciousness the night of my sah, my last words to the paramedics were 'Tell Helen and Ken (daughter & son) that I love them.' I actually remember fighting to get these words out before blacking out.

But after their faithful support throughout the whole critical and recovery period and beyond, I was able to tell them myself. And I've never failed to feel thankful for my 'deliverance' for that alone. . . . . . . . .

So I too am more appreciative of the birds, sunshine, trees and so, so much more.

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Yes, every day. Like others who have replied I do think my wife's life would have been easier without me.

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Hi Remember,

I don't think your post will have offended anyone here because I suspect we've all been there at some point.

My problem is a slow growing tumour thats in a bit they don't want to go to and is 'diffuse' so boundaries don't really exist. But the biggest blow was that it causes epilepsy which is or seems hard to control so I lost my HGV license and my car license. Driving being my passion means losing both licenses and knowing my HGV is never coming back and it's unlikely the car license too. Plus having been a musician (although as having been a drummer I suspect others would dispute that lol) and now unable to do as co-ordination, grip etc. etc are a bit squiffy.

Having been used to working 50+ hours over 5 days (+ my hours rehearsing and peforming) since leaving school at 16, I am now 59 an 57 when first diagnosed, (last job 60+) to finding that more than an hour or two of concerted effort will leave me flat for ages and a day out will mean two days to recover is a bit of a contrast.

I feel lucky though because although these are progressive problems that may improve short to medium term by possible radiotherapy, at least I have choices, do I have surgery or radiotherapy or chemotherapy, where people who have had a trauma based brain injury have no choice because one day they're fine then wake up unfine which I can only imagine as a devastating shock until they can get used (or accept it) to it and realise their is help out there to help them cope.

The up side is I get a bus pass for free travel by bus before it was due because of being old lol.

Try to stay positive and take any help offered and look for other help too. This forum is brill for that as all here really know and get where your coming from.

All the best

Sporan

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yeah, i'm definitely with you on this. not much future hope and it's all day by day and it's all the same stuff always and life is sooooooooooo long. exhaustion.

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yes sometimes i think it would have been better if i died during surgery than be left like this

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It's all about acceptance, even my mild injury has caused a version of me that is neither my wife or I prefure over the original.

But that was then and this is now. I can't turn back time and I've recovered very well indeed, I'm so glad I still am largely who I was. If not totally.

I get so so angry over nothing's I think is the worse.

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Yes I also think it is a very bleak place we have all been at some point and some will find themselves there more than others. When I am there I wish I hadn't survived the coma and had slipped away as it was thought would happen. But I survived and all the 'whys' I question because day to day life is now very tough but am yet to find the answers.

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Hi remember

As you can see by the replies you are not alone with this feeling,

I r'mber crying to a friend in the early weeks and saying, it would have been easier for everyone, esp me, if I had just died. Her very wise answer was a real wake up call to me, 'but you didn't die and there is a reason for that, you need to find that reason'.

I felt I had lost my purpose in life along with so much more, but she reminded me of the bigger picture and altho the life I used to lead has gone, it doesn't mean that I can't carve out a new more suitable life.

Try to get as much support as you can remember and enjoy carving :)

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Clearly you are not alone... I like to think that over time I have found a level of acceptance and I know that I am protected for the most part by my memory loss, but every now and again reality comes crashes in and I feel this so strongly it almost crushes me...

But then its gone again and life part two carries on.

This post BI life is not what we ordered or expected, neither of us prefers the new version but as has already been said the birds still sing and its up to us to find the reason we survived/a reason to move forward...even on reality crash days.

This is not something that should offend anyone...it is real and true for so many of us...

I hope you found the replies comforting/useful

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Hi remember

Yes and I still do sometimes! 7 mths post TBI and I haven't accepted that I am in this for the long haul

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Dick has often said he wished he had died, because life would have been easier for me.

My reply , I would sooner have him alive and brain damaged, than not have him in my life at all.

He is doing so much better than anyone predicted & I am proud to have him as my husband.

Stay positive, things WILL get better.

Thinking of you & sending positive vibes

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Hi

Yes me too - but more in a way of 'whats my purpose' now than giving up if you like.

I haven't found the answer yet and as our friend 'BSA' says, 'you might as well live it'. Lifes not long and I suppose it might be the only one we do get.

I have questioned religion a lot since my accident. Never done that before. I haven't found any answers there either yet.

Someone recently wrote on this forum the experience of a head injury is a humbling experience. That stays in my mind these days as its absolutely correct, for me anyway. Maybe that is the answer for all of this.

I often think about the subject of life and how near we are to loose it, maybe today, maybe in 30 years time, but I know deep down in side I wouldn't 'press the red button' if it came to it. Probably through coward ism.

Hope you have less dark days than lighter - we have lost of friends on this forum.

Jules

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MANY MANY TIMES ESPECIALLY WHEN I'M IN OVERWHELIMG PAI.

IT MAKESME THI

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MANY MANY TIMES ESPECIALLY WHEN I'M IN EXCRUTATING PAIN WITH MY HEAD.

I FIND MYSELF BEING ANGRY AT ALL THE THNGS I'LL NEVER BE ABLE TO & HOW LITTLE SUPPORT I'VE GOT FROM MY "FAMILY", THIS IS VERY DESTRUCTIVE & POINTLESS BUT I JUST CAN'T SEE THE GOOD THINGS I CAN DO.

I'MIN A REALLY DARK MOOD AT THESE TIMES.

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I'm so glad you have written what you have. I get extremely frustrated! Up till about 4 months ago, I would cross a road, thinking, maybe I'll get run over! At the moment I have been feeling weak and dizzy for over one week. I think it's mental fatigue, as I have just organised a Christmas lunch. It's now over, so hopefully I will start to recover now! Silly, it was such a simple thing, so it's so frustrating that it got me so worked up!

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Hello there,

Yes I'm afraid it does enter my mind quit a bit,

I feel not only I would of been spared from everything I'm still dealing with, but also the few that care for me would of been too.

Also I'm sick & tired of always having to explain, 'but if your head injury is so bad why do you look so fine'... This never fails to make me angry,

So much so that I've just purchased a huge disabled car sticker which I might put on the back of my wheelchair with the words that simply reads 'disabled doesn't mean that we have to look different' just might end all the fools that expect us to somehow look so very different & if we don't, well we must be making it all up.

Sorry just having a rant.

I do hope you are coping better than I am this week:-( .

Valerie x

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Occasionally,after my other half had had a dig about some task I hadn't managed due to fatigue or memory/concentration issues I have given the angry answer'Perhaps it would have been better if it had taken me'.I don't personally feel this way about myself-it is more my verbal slap in the face to make him thinkabout how his critisism can be hurtful.I think that because I improved so much in the first six months and I am a battler he assumed it would continue at this rate instead of plateauing out. As time has gone on he has become aware of my limitations and now knows when I am struggling -I think he felt that my problems were not genuine at first and that perhaps I was not making the effort.I have made peace with my current level of recovery and am aware of my base level-I know if I overdo it its payback time.There is always potential for improvement and adaptation is a natural progression of acceptance.Not to say I don't get frustrated with myself and that my nerves don't get on my nerves sometimes!(have improved at tuning out annoying pain and weird sensations) but frustration takes from my energy bank and serves no purpose.I consider myself very lucky to be this functional and have learned so much about myself and others through this experience.I hope that you can make peace with yourself and move on as the new you. x

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