Does anyone else struggle to find a title ...

[Julesgettingthere]

Hello anyone still awake ?

Aqua and Matt I missed your messages - thank you for talking.

Jules

[Hidden]

Yes, can't sleep: stressed, fretting, ANGRY, sick of writing (physically hurts), sick of asking for help and being fobbed off, sick of being tOLD to write more letters/COMPLAIN. SICK SICK SICK.

And spent ages prepare for appointment (too far away) moro, lat minute. But thought could do but can't, want to, want talk but always FAIL and some days can hardly talk. So late now, want take tab to try stop brain but SO late and they don't work very well. HATE taking them. HATE my life.Not a life.

You?

[Julesgettingthere in reply to Hidden]

Hi there Muddled.

Well its not just me then.

Tell me, if you can more about your 'fail' to speak.

I am wondering if you go through the same as me.

Tell you what Muddled, this site, well the people on it are a life line -

I dont know what your injuries were - if I did I have forgotten. eith way the net result seems to be similar for a lot of people. Not sure why, but 'chatting' here makes me feel not so alone.

Jules

[Hidden in reply to Julesgettingthere]

Nope, not just you - and how many more? Errm: not counted. Why? Lost to the system, don't care, don't want to know. Cut off like me. Send messages into the ether,messages in bottles, hoping someone somewhere will actually HELP. Silly, like praying (I don't: I ask people in front of me and those who receive my letters.

You: Tell me, if you can more about your 'fail' to speak.

I am wondering if you go through the same as me.

- so hard to describe. Clouds and scramble in my brain, too hard to say so simplest (or wrong) things come out. Varies. All too big to say, all relates to everything else. They ask a Q and too much to say, Q not asked right. Me tired and too hard work to think or say. Tried for too long, written and said OUT. Nothing new to say. repetition = pointless and given up, even when try SO hard = no result or they change my words and meaning is changed. Like art (can't do) too many zillions of things could do (say), which to choose = can't. Tiring to talk, at start couldn't move mouth/tongue (or swallow) properly. GO heard,must have,but ignored. Go to find thoughts and words and not there, do something else and often comes but not always = drives me mad and must search net or if not got = ask someone.

People don't give me time, cut in, finish sentences not how I would but too tired to correct. When they give me time I go blank. Awful for me/them. Questions too open or not open enough. Say wrong thing, not what want to say coz that too big, complicated, can't find words. Sometimes say yes for no & vice versa. Can't understand nuances, jokes and other things. Things come out of my mouth that I had no awareness of even thinking before I hear myself saying them, shocking. Every movement of every kind takes energy and thinking = EVERYTHING = knackering, exhausting. Washing up, leaving the house = like battle campaigns. But nobody SEES this, invisible to everyone else, all the EFFORT.

I LOVE chatting with people, hate typing. Some days even doing text message impossible, same for talking but varies within minutes = they think you're faking it, I can't understand so no wonder they can't. But experts SHOULD know and SEE, that's their job. Can't see any and NO diagnosis = driving me MAD. So SO long. So cruel. They all KNOW that but don't care. Others laugh, ha ha. Makes me hate myself. I'm not a proper person any more = as I told ABI counsellor in 2007. Pointless and useless,a failure. (my neck and right eye's hurting BAD but nobody gives a toss.)

Tell you what Muddled, this site, well the people on it are a life line

- Are they? Virtual? Really? Dunno. Personally I prefer people I can see, hear and smell (!). Dunno who online people are,motives or privacy. Deceptions. FEAR. But desperate. Type = hard work and now throat's hurting. Ahh but not all ABIers have that and rather rare, I think = doesn't matter? See your below: throat injury not same net result but yes for ABI. Maybe. Varies but yes lots same.

I feel VERY alone. People difficult, try but fail. Not anybody's responsibility,no follow-up mental or physical health or social services or charities = ZILCH. Dumped. And I'm told to keep trying, find solutions, that I have resources that I don't = they all DELUDED. I'm BROKEN. Try to hide, put on brave face but not for long or often.

I dont know what your injuries were - if I did I have forgotten. eith way the net result seems to be similar for a lot of people. Not sure why, but 'chatting' here makes me feel not so alone.

- yes me too, sometimes,other times I feel like people making fun and judging even here, meds being pushed etc. Sometimes feel VERY unsafe on here, like real world. HATE my life, people know that but just feel 'sad', do nothing. Sick of fake looks of concern and people trying not to laugh. Ha ha? Nope. SICK.

Appointment moro = blown it, not my fault, so wanted try do, wrote lots prepare = pointless waste of my energy. Give up? No choice coz 'fun' to block me? Ha ha? Nope, but they like it. Feeling VERY sick and ill and neck KILLING me. Nobody givesa toss.

Another time, maybe. Can't ever explain the talking stuff properly. Sorry. Thanks.

[Julesgettingthere in reply to Hidden]

Hi Muddled,

I have never chatted with anyone whos experiences in life, now, mirror my own, probably 90 %.

There is a feeling I get, not all the time, but every day at some stage. I cant explain well in words - the best i have come up with is 'an empty lost person'. Thats how I get sometimes.

I think about what life is a lot these days. I dont know if its healthy to do so... but there you go.

Some one on this forum said to me (just after I had joined Healthunlocked) that for them their injury (it was a brain injury) was a 'humbling experience'.

I think that hits the nail on the head for me- when everything is taken away from you and only the shell is there you have nop choice but to contemplate on a different level.

The experience of 'humbling' has made me look at what I have or have not done in my life - I cant change things I have done wrong in the past - but I hope I will be a GOOD person nowadays, hopefully have been in the past.

It has taken me four years - but its only recently I have began to realise there isn't anyone out there who is going to 'fix' me. Its me that has to do that, or learn to cope without 'me' as I was before.

I really related to your comments on talking and people correcting and butting in and being too tired to prevent it. Also, related to when you mind becomes 'muddled' when people talk/ask questions and coming out with the wrong thing.

On a lighter note - i went to see the new Steven Hawkins movie at the cinema on New Years Day - first time I had been out for ages. I really admire him and enjoyed the film - have you seen it ?

You are probably asleep now after all my rambling

Jules

[Matt2584]

Jules, you could not see my messages?

You asked if anyone was around and I said I was around but I think that might be because I ate too much :).

I think I used to struggle to have a title. Well, actually, my title was probably 'Nobody' or 'Hermit'.

Yet again, my title has changed for the better I think.

You can also think that nobody really needs a title. Say Brad Pitt, his title might be 'actor' or something like that whereas you could simplify it and say his title is 'Mr' :).

[Julesgettingthere in reply to Matt2584]

Hi Matt

I am slow sometimes, and as you know yourself, lack of sleep makes things worse.

Hence yes I seem to have missed a message or 2.

Title:

I meant the forum thing... when you send a post it sometimes asks for a title and will not send otherwise. Its times like that that I know I have problems - I can type away then when asked to put a title to it and I am thrown for quite a while. The human brain eh !

I eventually went to sleep about 6 am I think. Feeling better today than I did yesterday.

Sorry if I did moan a bit yesterday... thank you for your chat,

I have tried to do a little work this morning but my head is 'full'. I start with energy and ideas then after about an hour my head fills. For me its like you feel when you have been driving on a motorway for too long without a break.

Does that happen to you ?

Jules

[Matt2584 in reply to Julesgettingthere]

Ah, title as in message titles.

I've had that happen before where I might type out a message but it could not send because there was no title.

I recognise what you mean about your head feeling full. I am an artist, not well known, and after I do some drawing I might get a thick head or as I might say "It feels like my brain has been replaced with a house brick" :).

[Julesgettingthere in reply to Matt2584]

What causes it ?

I find if i change environment it stops after a couple of hours.

Jules

[Matt2584 in reply to Julesgettingthere]

For me, making the brain work extra hard causes a thick-feeling head. Drawing/being creative uses extra brain power.

If I decide to stop drawing when my head feels thick and I sit and rest my head ould eventually clear up. Usually a good nap would prove better :).

[angelite]

Hi Jules,I have seen your mysterious late night messages before-too long after you posted to answer !

Under your description it simply says 'alone '.I assure you are not-we are here,if a little later than expected !

I went to see the Stephen Hawking film recently-got so excited I put a post up about it on here !I thought it was sensitively and honestly done.Two amazing people.Would certainly go to the cinema again,now that I've tried it and managed OK.Currently off sick with a big clobbery cold/chest virus so awake at all hours-been watching the movies for men channel on TV for a laugh-requires no concentration at all !

Take care, Angela x

[Julesgettingthere in reply to angelite]

Hello Angela

Good to know lots of people are doing the same.

Slept better last night feel more robust today.

Hope you have a good day, whatever you are doing

Kind regards

Jules

[sporan]

Hi Julesgettingthere,

I'm pretty new to this forum and think I have only put one post up but sent loads of replies just to pester people .

WHen I told my neuropsycologist and my speech therapist about using this site they both said it was a great idea to help reduce or remove the feeling of isolation some of our conditions cause, usually because well and fit people just don't 'get it' or just get fed up with our whingeing

Firt time I think I've replied to one of your threads so 'Hello I'm Sporan' and I give Matt advice on the correct nose hair trimmers to use to avoid entanglement and pain lol .

Watch out I'm pestering YOU now

Sporan

[Julesgettingthere in reply to sporan]

Hell Sporan - Jules here

The site does make me feel less isolated - not isolated at all by the time I have been on and had a 'chat' Guess its the same for others.

I do worry sometimes that I winged too much and people may stop chatting to me.

So pester away.

Jules

[sporan]

Hi Jules

I shouldn't worry about whinging. I reckon this site is for whinging, getting and giving support... Oh! and having a bit of a chuckle from time to time, plus just general chat.

Take care

Geoff