Oddawa786

I read your story and many of the people that do not understand you are not in tune with compassion for others. I feel your pain and unresolved issues that cripple you. It is to say the least that I am here and reading your story and taking just a small bit of my life to let you know that you are being heard and from this small corner of the world, I feel like I do understand you. This world today no one wants to be patient or take time for healing. When something tragic happens we are healing everyday and it takes time and will be like this for the rest of the time we are here. The world needs to slow down and realize that there are different levels of being ok, not just one but many and sometimes we are still trying to reach the point that we lost. But, unfortunately sometimes we can never make it back. I say unfortunately because I understand that there are many that would love to have that back. Still some are ok with who they are now. It just depends. I am not an expert just someone that cares for others and even though my soul mate is not with me now due to his injuries etc. I hope I can reach out to others that may be feeling like him.

duffdiode in reply to Oddawa786

Thankyou so much. That small bit of time you have given means so much and it makes such a difference from people who understand. My perspective has changed and to be honest, in some respects I think for the better. I've always cared about people but this has taken away any barriers I may have had. I find it hard to understand why people get so caught up with things rather than people. I'm genuinely sorry to hear about your soul mate. That must be crushing. I really feel for you. You have reached out and it's really appreciated. This post brain injury thing fluctuates so much and your words have made me feel so much better than when I wrote it, so thankyou.

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Oddawa786 in reply to duffdiode

He was hurt July 31, 2014. That day is always in my mind. But I have no idea how things are for him because we have not been able to spend a moment of time together since he was hospitalized. He is doing well from pictures that his family share online. But as far as inside I do not know. I am happy that things are getting better and I do realize that fluctuations take place, that is usually with everything in life. So, keep on keeping on! WE all get overwhelmed sometimes.

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SORRY THID WILL BE BRIEF AS I'M REALLY SHAKY THIS MORNING & MY TYPING IS CRAPPER THAN USUAL.

I HAD PTA AFTER MY BRAIN HAEMORRHAGE ON 14TH NOVEMBER 1997 & REMEMBER NOTHING AT ALL FOR THE FIRST 2 WEEKS. & ONLY SNATCHES UNTIL MID DECEMBER

THEN IT SEEMS TO HAVE GONE AGAIN AS I REMEMBER NOTHING REALLY TILL JANUARY. INCLUDING XMAS.

I HATE IT WHEN PEOPLE SAY" THERE ARE SOME PEOPLE WHO ARE SO MUCH WORSE THAN YOU".

I KNOW THAT BUT I CAN ONLY DEAL WITHLIVING WITH MY BI NOT ANYONE ELSE'S IT'S PATRONINSING & BELITTLING & SHOWS NO RESPECT OR COMPASION FOR ME. HOPE I DON'T SOUND UNKIND.

Hidden

Hi Duff

Welcome and sorry you are in such an awful place - I r'mber it well and I'm sure everyone else on here will recognise it too.

It is 7 months for me now, and things are improving. But I am nowhere near the way I was or the person I was. So many of us endure the unhelpful comments and the belittling of our experiences, and the isolation is unbearable.

I r'mber saying to someone the next person that says 'oh but you look so well' I swear I will slap them

This forum is an amazing sanctuary, where you can restore your faith in the human race (probably not in the NHS tho!) People on here are understanding and supportive.

You will notice that there are all sorts of converstaions going on here, some are light, fun and others are deep thoughts/feelings. No doubt like the rest of us you will dip in and out of the threads depending on your mood.

Hang in their Duff, we are all here for you, as I am sure you will be for us.

RogerCMerriman

I do get a lot of "but you look good" because in terms of body I'm fit and health but being fit and health doesn't stop me crashing for 2 and half days after a work party. And so on.

Yes there are plenty of people who suffered worse, and on good days yes I feel lucky.

But I'm not who I was. I get wound up by stupid things/up set over nothing.

I find I have just about energy to cope with work so my time off I end up sleeping for most part.

Matt2584

Hi Duffdiode,

I know how you are feeling. I made a post not too long ago about the 'we all get that' saying that family or friends might say. The fact is, yes people do get feel tired at random times or some people might get a minor headache but they do not know what it is like at all to have a BI. My Dad is the worst for saying hose types of things but he, in general, just really gets on my nerves. It's as if he says those kinds of things to make me feel like I am not an outsider which in some ways is nice of him but makes me think, not everyone has a BI so how can he say those things? My Dad hasn't got much sympathy, especially for me but I don't care about him much anyway haha. Sometimes I feel like he thinks I don't possess a BI, and this would be one of the reasons why I try to get away from him.

Nutkin33

Welcome to the site. I know how you feel. I am almost two years post injury, and up to about four months ago, I had the feeling I was from another world, looking in. I still have moments like that, and it's a very weird feeling. As if I am in a little box, and no one can see in! Hope it eventially goes!!

iforget

I empathise in spades... On the outside I look pretty much as I did before my accident (in 2006) and to this day I have absolutely no memory of the accident. I have read the accident report, medical reports and even been back to where it happened but zip, nada, not a thing...

Now I am left with pretty much zero short term memory, the attention span of a dead slug and an atomic temper with a very short fuse...

I hate it when people tell me how lucky I am, and every time someone tells me they "forget stuff all the time" or suggest I "try writing stuff down if you don't remember" I want to scream...

But they don't understand - how could they? I have had people in trying to be supportive, do/say some of the funniest things imaginable...I sometimes wonder if they ever went home and thought OMG why did I say that?

The practical things are hard enough to explain to others but trying to explain the emotional disconnect is nigh on impossible...and every time I read a post like yours it makes me want to

a) cry

b) hug the person feeling this way (in this case you...so consider yourself "virtual hug"ged )

because I, like so many others here, have lived/are living through this and I know how shitty it is

Hidden in reply to iforget

Yes, writing things down, get told to do that all the time so I do: useless! Too many writings, too many papers full of scribbled notes. Can't find the info I wrote and now need unless it happens to be out on worktop (like tonight).

I've tried everything: sticky post0its which don't stick. Fridge covered in notes with magnets - but my calendar there works IF I wrote it in and IF can see the tiny scribble.

Tried spiral notebook - no space to add later = need ring binder, add pages? Too big, too many, some things file under 2 or more headings.

Utter nightmare. Believe me I've tried. Only solution is to have almost NO papers to do. Systems all set up. Easy reminders that work.

But the real world doesn't work like that. I fail, can't do it, not my fault but am made to feel like it is. Get so stressed by it all.

My idea of heaven? NO PAPERS to do or respond to - other than nice letters from friends, which I'd reply to. Oh that'd be utopia! Here's to (silly) dreams.

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Hidden

Oh wow: I could have written that myself, I feel so like that! And mine was 9 years ago.

When they talk about amnesia before and after the ABI (can't remember the names) they act like there's a line at some time before and some time after whereas my utter confusion for things is like a big grey blurry blob about 2 (?) -ish years before my ABI to a year or so after.

And within this blurry time (feels pretty fluid) period often I'm not sure if things that I remember happened before of after my ABI.

To make it even more confusing some days I can do it better then others and some events I can tie to something that I know (from something else) was definitely either before of after my brain injury.

I cam't believe that docs still believe this pre- and post- ABI amnesia can be so stright-forward, a straight line between remembering and not.

How can they still believe this, not talked to ABIers or asked us, just from other 'experts'?!

Same for Glasgow Coma Score, I think for many (most?) people this is meaningless for outcome. And I was anaesthetised = can't do it then but so scrambled and couldn't talk think properly = not noted, they wrongly assumed it was the anaesthetic.

And told me later my eye and throat damage was just 'normal' from that too.

Why don't they listen to us and believe us, what we know?

About time they wanted to learn from us! Here's hoping...

Alice5

I can see so much of what you are all saying in my son. I think neither he nor I realised or perhaps accepted, until recently (3 years since his SAH) that although he looks the same and talks the same, he is different. He does well but he has a very short fuse which can flare up easily and he doesn't always act appropriately.

Our friends recognise that he is different, the same person but things are accentuated.

I am learning all the time from this forum and it helps to let off steam sometimes with people who understand.

Shame I didn't access this site earlier but better late than never!