About time I asked again I think......... ;o)

I notice there are a fair few people on here that haven't filled in their profile to explain basically what happened to yourself.

This helps with memory, especially when U come on regularly cos U remember things about specific people & I for one, find it interesting to find out about what has actually happened to people, how they overcome their problems, or maybe find out the problems they are still suffering from.

This way, you might be able to offer suggestions if it is something you have encountered yourself or vice versa.

Oh & another thing, several people such as myself, struggle with reading one long paragraph & I notice that some people write about 20 / 30 lines without a space to break it up.

I know a lot of other people also have problems with this, so it would be good if U broke up your post. Similar to how I have myself.

Thanx in advance, it does help many of us, a lot.


25 Replies

  • Glad you raised this Stace I don't in fact reply to people who don't put a profile on, I think it's only good manners to introduce yourself and also I can be a bit suspicious.

    I don't want to know their life story and they don't need to reveal anything private.

    Janet x

  • A bit suspicious Janet ???

    And U don't want t hear someone's life story ??? Best not read mine then eh ;o)

    Nah the first parts more valuable information such as Headway info, then a bit about my life post HI and then if I haven't bored U t death, what actually happened ;o)

    Tc Janet Xxx

  • I didn't mean to sound rude, I'm happy to read someone's life story if they want to tell me but I don't wish to pry or pressure anyone. The bare bones is sufficient.

    Perhaps I'm a bit too cautious. I'm digging a hole here aren't I?

    Enough said.

    Best wishes Janet x

  • Hi Janet, sorry, i'm having a bonkers couple of days, no youre not digging a hole (its bonkers here, a family household member;s ill, im sure he'll get there!). i guess im the suspicious one as i dont want the potential 'defendants ' or anyone remotely connected to them putting two and two together to get 5, and arguing that im alright as i can string a sentence together sometimes with much more effort than a normal. best wishes, E, take it easy

  • Stace i think youve been very reasonable and polite in your request and i also think its a good idea to see what people with the same or similar injuries have gone through, infact it could be invaluable to be aware of such people.

    I try to keep a look out for people who have similar injuries to me.

    But, i personally cant update a "profile" as a potential medical negligence claimant. I dont want anyone who is remotely involved in my stay i n that hospital to stumble upon my profile, it could be unwise for me to update a profile detailing injuries more specifically than i have and for me to say how i received these injuries, that would be the nature of what people think is medical negligence .

  • & U have good reason why not to Eleanor - good luck anyway ;o)


  • Hi Stace

    just tried accessing my profile but it will not liad at the moment.

    I think I have posted a short profile, tried more detailed but think it may run to several chapters.

    Maybe it would be useful if there was somewhere you coul post a more detailed biog on here.

    It may be usefull to find others who have gone through simular experiences.Although I know any questions you have are quickly answered from people on here.

    I have found this forum a useful outlet, for findinf answers or just letting off steam.....even if nobody answers.

    I can be soooooooo guilty of the condition waffleitus but am trying to break it into short paragraphs as I know it is easier to read.

    Time I shut up now.


  • At last managed to get into my profile. Added a bit more detail but like I said not enough to fill a book ......yet.

    Thanks for raising the issue.


  • Btw Pax - did U look at my profile ???

    The King of waffleitus me & U have written a paragraph about yourself ;o) but when your profile does load maybe you would like t waffle away ;o)


  • Just seen the 2nd comment Pax & I'll look forward t reading yr book ;o)

    Oh & in the 1st I notice your last comment - Time I shut up now.

    My favourite comment - ' I'll shut up now ' ;o)

  • Agree on both points Stace. Just the barest details help, as in whether ABI/TBI ; how long ago, and present issues.

    But also it can be a guessing game as to the gender of the person behind the profile, so I personally would find a simple M or F pretty useful. I hope that's not sexist ; it just makes it easier to get a vague picture of whoever I'm talking to.

    It's true the solid paragraphs can be daunting and I admit to being over-faced by them sometimes. The bite-size para's are much, much more manageable.

    Hope you're doing ok Stace. x

  • Hiya Cat, yeah I'm really well thanx. Met the most incredible girl, my true soul mate. Hope you're well too.

    You're right the barest details are good or even better a long waffley one like mine ;o)

    Ok fair enough a 'brief' description is probly better, but once I get started.............

    An M or F or even better a picture (talkin of which I think I'll change mine to a more recent one cos that's a couple of years old now ;o)

    Take care Xxx

  • You do sound really buoyant I must say. Amazing the effect the 'right' person can have on us isn't it ? I'm really happy for you ..................... you're one of the good guys ! ;-)

    My profile photo's about 4 years old but I don't think I've changed much in that time ; the hair dye covers any extra grey. :o x

  • Oh yeah that's just reminded me, I was going to change my profile pic wasn't I ???

    I'll do that now before I forget ;o)


  • Hi Stace

    You raise some valid points. As a carer I need to be careful what and how much I say about my adult daughter as it's her injury rather than mine. She may at some point want to join the forum and make her own decisions about how much she would like to disclose.

    On the other hand if it would make some forum members less uneasy and more likely to respond, I'm happy to write a short bio.

    So I actually did click 'edit profile', typed in some information in the appropriate box, saved changes and the bio disappeared. What did I do wrong?

  • Unfortunately I have no eyed deer, sorry.

    Maybe worth trying again. Just a few lines t make sure it works or may be ' test ' & then if that works edit - good plan ???

  • Hi Lazuli,

    I just did the very same thing only to have it disappear too !

    Disappointing : ( x

  • Sorry, find I am so busy typing I don't notice that it's one huge paragraph. Will try to remember in future and thank you for reminding me.

  • Not a problem, perhaps when you've finished writing, you could then just read through and maybe break up paragraphs ???

    I am aware this can be a problem for some people with a BI / HI so don't worry too much, but as I said if it was possible t maybe read through it after you've written and add paragraphs, that would be good ;o)

  • Hi Stace, Good points. I too have trouble reading one big paragraph so I'm pleased you brought this up. N

  • I think we also need to remeber that the forum is a fairly confusing one, so even with out BI you'd get the odd huge paragraph etc.

    As others I do find it helps if it's broken up, but I do understand if it's not, just means might mean I leave answering to another day when I have enough brain to process a large block of text.

    I do try to go back, and read. Though I do forget and if it slips off the news feed, by next time I check...

  • Fair play Roger & as I said, it can be difficult but more often than not eh ;o)

    I always find if the paragraphs aren't broken up, I scroll up so there like 4 lines to read at a time (if that makes sense ;o)

  • Hi Stace. Thought I put something in when joined. Site changed.

    Find difficult to follow and like Roger I read a few lines at a time.

    Always want to continue and reply but have to stop.

    Come back. Its gone!

    Like playing catch up but never actually catching up! K

  • Done!

  • Hi Stace,

    The main reason that I did not put any history about my illness is because ultimately, after having been originally told suspected Encephalitis, I was put down as FND. In it's pure form it simply means neurological symptoms for which no definite cause was found. However, my experience was that many medical people treat you with contempt/ as a timewaster and tell you that you have a mental illness or are fictionalising symptoms. I believe I had sufficient correlation in symptoms/ bloodtests and outcome to strongly suggest Encephalitis but did not get all the UK guideline tests. I was therefore worried about this label and not being accepted on here or taken seriously.

    Since others have come to know me, I feel that I am viewed as genuine and would now be more comfortable to add my story. I have also learned that the 'all in your head' scapegoat after a clear scan is a common ploy in the medical profession these days, to avoid the expense of further tests and treatment, so at least I know I am not alone in this.

    I am guilty of long paragraphs at times - I get caught up in wanting to express my thoughts before I lose track ! : )

    Angela x

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