Am I the only one who likes t kno what people have been through ???

[StaceM8]

I do wish people would write a bit about themselves in their profile so we can see what has happened to you & why U are getting the problems U are encountering ???

& not the generic ' I am my screen name '

[Hidden]

Ok Stace, I have given in to your nagging

I now have a detailed profile - you're not getting a photo tho!!

[StaceM8 in reply to Hidden]

And why ever not ???

[Hidden in reply to StaceM8]

Total introvert! That's why it took me so long to write anything on my profile. I thought about uploading a photo of the cat or something, but then realised I probably wouldn't do it right - not very technically minded

[StaceM8 in reply to Hidden]

Ok, I'll let you off I guess ;o)

[Danslatete]

I was obsessed wanting to know how others got better, what they found difficult, had they experienced the same as I did. But this site is all that and more! If it had been around then I wouldn't have had to trawl through books to get the information I was seeking.

[StaceM8]

You joined on my birthday ;o)

Good t see things are getting back on track for you work wise & your husband now has a good job again. (I think that's what U said in your profile. I have great difficulty in remembering properly if the information isn't split by spaces for each paragraph ;o(

This site is fantastic & like most people wish I had found it sooner - like U it would have saved me trawling and for me getting nowhere ;o( but even though it took me 20 years t find the site, am so glad I have ;o)

[Saucychef]

I have updated my profile just for you mate

[StaceM8]

Not nice Phil. Notice your problems with sleeping - Have U seen my post on ' the power nap ' something U should find interesting & is so worth trying out ;o)

[Broken_Doll in reply to StaceM8]

Stace you should be a salesman

[StaceM8 in reply to Broken_Doll]

I just wanna help Emma & share my experience.

I've gone through hell (like everyone seems t be going through, so if I can save people going through what I've been through, it's worth mentioning, whether people listen to my advice / suggestions that's upto them but I do wish someone had told me shortly after my accident & what du think I used t be before my accident (& I was pretty good salesmen too ;o)

Now I just sell my suggestions (for nothin, certainly not a ruthless salesman eh ;o)

[iforget]

I think I have details on mine... not sure if they are enough or want you would like to know...but there will be no photos...I forget why

[StaceM8]

;o)

Well you've definitely made an important step on the way to recovery - accepting that you're not the same person you were before and will never be that person again. It's now making the most of the person U are now & the person U aspire to be ;o)

Good luck with your continued recovery - having family there t support U is important & hopefully they do understand, but if not for whatever reason remember to direct them to the site ;o)

Xxx

[amateurwriter]

I have just updated my profile thing, not changing the first bit thought because I love the quote from karate kid, I'm sorry for the length but I have remembered to split it up into paragraphs.

[StaceM8]

Doesn't sound good at all but on the positive side at least U have found this site where U should be able t get all the help & support U need.

I only came across it a couple of months ago after 20 years & am so glad I did. If there's anything U need to ask I'll try my best t help, but if not I start off my profile with the numbers for headway who will probably be able to answer anything U need t know, cos they have gained so much experience over the years (a million times more than me ;o)

Speak soon ;o)

[StaceM8]

Oh yeah I meant t say, if you';re able t break up each paragraph with a space, that makes it even easier - cheers pet Xxx

[amateurwriter in reply to StaceM8]

I actually came across this site over a year ago but then forgot about the site until I was going through my emails and saw one, kept thinking it was junk until I read the email and realised it wasn't so had to request a new password.

I have just put spaces in between each paragraph, sorry about that, forgot about the spaces.

Thank you, I love this forum because I barely have any friends left because people don't know how to take me anymore after my accident and to a certain extent some of my family members don't know how to take me due to the problems I have, so on here it's like a family almost.

Thank you, Siobhan x

[StaceM8 in reply to amateurwriter]

Thank U Si (Ok t call U that I assume) - I'll go n read it again cos I find it so much easier t take in when it's like that ;o)

Unfortunately I have had the same problem. people don't understand. Are U in the same boat, come across as perfectly normal most of the time but U do have some underlying problems that cause a major problem ???

Making new friends is just as much a problem too for the same reason.

& I don't know whether you've read my posts but that is what I'm going through with my brother at the moment, cos he wants t think of me as perfectly normal (which I am most of the time - so annoying eh ???

As I was told by someone on here, it seems like my brother is in denial & doesn't want to think of me in any way other than I was 20 years ago (although more grown up obviously, but I'm sure U understand what i'm getting at ;o)

Xxx

[amateurwriter in reply to StaceM8]

Yeah that's fine I usually get called sio from friends

Yep, all the time, the work programme I go to think's I'm lying about everything that has happened to me, I was almost in tears at one point because they basically said it's all lies.

I got accused of being drunk when I was in a shop once think it was last week or the week before, I was just standing there and then I just started falling to one side so I had to move my feet really quickly to stop myself from falling over, this woman was stood behind me and said are you drunk but afterwards once I'd got back home I think she was joking in a way but I was so embarrassed I couldn't get to the bus stop quick enough.

My mum is the same, likes to think of me as an average person, (I don't use the word 'normal' because nobody is normal so I use the word average) but when she asks me to do something and I forget she gets really annoyed at me, and then I will say it's not my fault I forgot, I've got a rubbish memory, she will just reply with oh don't play on the head injury.

I just stand there like I'm not playing on it, but the thing that frustrates and get me more annoyed is the fact that my older brother is disabled, he suffered a brain injury due to lack of oxygen at birth, but she won't accept that I'm different, I used to have an almost photographic memory but I can barely remember anything these days.

It has took her 3 and a half years to accept the fact that I suffer from chronic migraines and no doctor knows when they will go away if they ever will.

At football, I have told my coach about my problems and my accident but no one else and he has agreed not to tell anyone else, so because none of the girls knew me before my accident they have accepted me the way I am today.

I haven't read your other posts, I try to come on here quite often but when I do, I either get distracted or forget what I was doing etc. So end up logging off and doing something else.

But yes I do understand, denial is the worst because it's like your hitting your head against a proverbial wall trying to get them to understand what is wrong with you.

Sio xx

[StaceM8 in reply to amateurwriter]

It is so frustrating but in there defence, I can understand why they think the way they do.

Get your mum t look at the posts on the site. It probably won't change her mind & she will still think that your different to everyone else who's had a head injury (again, denial) but it should at least make her think.

For example, I showed my brother a post which he'd moaned at me for doing, he read it but then the very next day had a go at me for doing it again. He thinks I o these things deliberately to get a reaction !!!

I just said 'U obviously didn't read the article I got U t read yesterday or at least didn't understand it', but in Nicks' eyes I'm different, that's not what happened t me an he does seem t be what must be ' in denial ' - so frustrating but you've gotta laugh at their ignorance - either that or smash their fat faces in ;o)

I do think it's worth reading the first part of my profile if nothing else ;o)

Xxx

So a girl who plays football & climbs trees ..... ;o)

[amateurwriter in reply to StaceM8]

Thank you for the advice, but I have spoke to headway about the way my mum thinks i'm still the same person I was before hand.

They sent me booklets for me to show my mum as well as for me to read them, she wouldn't read them, wouldn't look on here and read the posts, she wouldn't even listen to me when I read from the booklets to her.

I've even read out the posts to her but she says she doesn't want to know. Nothing I say or do she still won't accept the fact that I've changed.

And now I have received a letter through the post saying about me having surgery and I won't lie I'm a bit scared, but when I speak to my mum about the letter I know she won't listen, it's only because I'm pushed to one side so she can spend more time and effort on my siblings.

I have thought about just screaming at my mum and running out of the house but think i will wait to do that for when I've got a place and I've packed up, but that's just not me, I am one of these people would call a doormat.

The surgery isn't to do with my head it's another problem I have, it's to do with my legs, I was told that I needed further investigations, and surgery made me needed in the future, not right away.

I used to do parkour/free running as well, but didn't get good enough to jump from building to building before I had to stop because of my head and my legs, I was just injuring myself more, I went through a year of rugby when I was in primary school and also a year and a half of cricket during my last 2 years of high school. xxx

[Alice5 in reply to amateurwriter]

Ask your mother and friends to look at the information on Headway about "Effects of brain injury."

My son is in his forties and had a subarachnoid brain haemorrhage 3 years ago.

I have always helped whenever I could and been there for him, however it's only recently that I realise that, although he seems the same as he was before, there are subtle differences which seem small but can actually be quite major.

I didn't understand and looking back now, I don't think I always listened. I put things down to moodiness, laziness, irritability, taking me for granted etc. Now I realise these are after effects from the damage. Life was in fact overwhelming for him! Dealing with 2 things fine, throw anything more into the equation and it's too much!

Both my son and I can discuss things more easily now and once a difficulty has been recognised it's about finding ways to deal with it.

I found it really helpful reading the information and could identify with so much of it. It explains a lot and has helped me to understand much more.

It is a hidden disability that should not be underestimated!

I think it would be really helpful for friends to look at the site too.

Hope this helps

Alice

[StaceM8 in reply to amateurwriter]

Karate kid quote is a good one but I also like Chumbawumba's - ' I get knocked down but I get up again, you're never gonna keep me down ' ;o)

Something I'm not 100% sure of though - I first thought U were a girl then U mention playing football (which is a man's sport, obviously ;o) & climbing trees again quite a traditionally a boyish thing t do (or at least was in my day ;o)

Male or female ???

[amateurwriter in reply to StaceM8]

I am in fact female but I am a tomboy and yes I am straight, even though when people ask me if i'm gay or straight or bi, and I say i'm straight they will give me a funny look as to say are you sure lol.

My mum and even a teacher has said that I should have been a boy, which I find quite funny.

I like that quote as well, I think there is a chinese proverb or some proverb which says 'fall down 7 times get up 8 times' or something on them lines, which I also like.

[StaceM8 in reply to amateurwriter]

;o)

[StaceM8]

Oh yeah one last thing a name would be good too ;o)

[amateurwriter in reply to StaceM8]

Was this to me? just wondering because not sure, I'm sorry if it isn't to me

If it is, then my name is siobhan, due to certain other things and a certain forum, I don't want my mum to go through what I put on that forum, because it will cause a lot of arguments between me and her and until I manage to get a place of my own, I won't be changing my name to my actual name, I am really sorry about that.

[StaceM8]

That's not a problem obviously & yeah it was t you - how do U pronounce Siobhan ???

Question how come I knew your name in the first message but couldn't find it in the last one so needed to ask ???

As I said if you could put a space between each paragraph when writing a lot that'd be brilliant, cos it makes it so much easier t read & I would probably have been able t pick out your name eh ;o)

[amateurwriter in reply to StaceM8]

I had edited the response, sorry about that.

It's pronounced something on the lines of shivon.

I really do try to remember to put a line between each bit in my reply, but I sometimes do forget, think that's because I'm a member of a few other forums as well on this website so get confused between some of them.

Siobhan x

[StaceM8 in reply to amateurwriter]

Now Shivon - that's gotta be a girls name but then again I am called Stacey ;o)

Don't worry too much, it just means I have t read it again & again & again & again ......... ;o)

Xxx

[Matt2584]

Hi StacM8.

I joined Health Unlocked a few weeks ago but have not really posted much on here because I basically did not know what to write. I do have a brief discription of my background in my profile but not everybody seems to read my profile, I guess I am boring haha.

My past can be quite a complicated one if you wanted to know all the gory details which is why I normally keep it short an sweet. In 1996 I was diagnosed with an Astrocytoma (a benign brain tumour) and a lot of muckin' around I ended up in Southampton General Hospital where I had two operations that year. The first was to have a shunt installed and second was on the tumour itself. Because of the location of the tumour (at the back of my head on the brain stem where the nervous system is hangin' around), it was a very delicate operation. The surgeon could only remove a portion of the tumour before the rest had calcified, in other words "turned into bone". So the tumour is constantly blocking the path of cerebral spinal fluid (CSF) the brain produces which is the reason I still have my shunt and I have many more operation since then. My last op was in 2010 and since then I had no problems. Hopefully, that is the end of all my probs.

So how did you get your BI?

[Broken_Doll]

Hahaha I thought this post was aimed at me but looks like I wasn't the only guilty party

[RogerCMerriman]

I rarely look at folks profiles I'm unlikely to remeber what happend to who any way. my memory was rubbish anyway let lone now.

and frankly the symtoms are remarkably simular what ever the cause.

most folks tend to say what happened when they are posting or at least refure to it.

[StaceM8]

My memory's very poor & I've got no chance of remembering the first couple of times of looking but when U do look again the 3rd or 4th time it comes back t you. It's a good way to improve your memory.

For the first year after my accident I'd be lucky if I remembered what day it was or someone who I'd only met the day before, but it's now got to a passable level & as I said after lookin a couple of times it will come back t me.

Personally I am interested in other people & what's happened to them, what they've had t go through & see if there are any similarities in which I could share my 20 years of experience.

As U said the symptoms are similar whatever the cause of the brain injury so I can share little tips that I've come across during my recovery, such as the power nap, not putting pressure on yourself & the fact that people who haven't had a head injury simply do not understand, which is what is great about this site is the fact that we all do know, cos we're going through the same !!!

It also saves U repeating yourself time n time again !!!

[StaceM8]

As it goes your comment has just encouraged me to write a post about improving your memory - even 20 years later I am discovering more & more ways to overcome my problems ;o)

[Hidden]

OK, I'll put some about me. Can't upload photos though. coz my browser's out of date (it keeps telling me) or what? Wish we didn't have to update things all the time. I let my Mac do it as 'recommended' and it wrecked i-tunes and lost all the titles I'd typed in so haven't updated.

[StaceM8]

& if your software isn't upto date it causes blue screen. Computers are brilliant but so annoyin at the same time ;o/

[Nks425]

So I did an update on my profile. This site has been absolutely wonderful for me. It's nice to know others understand how I feel I side my head. The picture of the small desert is from my trip to Bratislava when I went to run my first half marathon

[StaceM8]

I think it's a fantastic site - I'm sure my recovery would have been far easier than it has been if I had come across it. But better late than never eh & hopefully I can share my experience & the things I have learned throughout my recovery t save others going through the shite that I've had t cope with. Worth checking out my profile & posts & some of it might help. I hope so anyway ;o)