My family and I had a long meeting last night and a few positive but honest things came out of it. Its damb clear that I have changed and my 15 year old daughter pointed out a few home truths to me which I thought were there but wasn't convinced. I tend to think allowed and I didn't used to, if I'm watching TV I will SAY what I think instead of just thinking it, which can be offensive to who ever is on the telly and who's ever in the room she said iv become very juvenile. I can just take the piss out of people but I tend to go a bit to far so I see her point. Im sure its very common that we all laugh at others misfortunes the only example I can give is if we see say someone walk into a lamp post I would find that very funny and laugh out loud, not all would. It seems my sense of humour which was always pretty dry has been stretched to the point of As my daughter says being juvenile or a what a kid would laugh at. Well come back to this.
Another problem is my personality and feelings. I have moments where I don't care about stuff not like I used to, I don't know why maybe it will come back this was talked about last night too and noticed by my wife and daughter. Mu son didn't say too much but he's 13. Personality change is a big one I know and have learnt that here and I too really understand that version 1 (V1) will not be back instead V2 is here and V3 is on the way which is accepting the new me and earning to live with it.
It was pretty upsetting in places last night as my daughter well all my family my son daughter and my wife have their own journeys with whats happened and still are on them. From the point of the accident they were all there especially the first few hours when they thought I was dead to being in hospital for a week where they first saw me changing to now. Its difficult for them and we/ they need some help.
Has anybody been to a one to one or as a family to headway and talked all this through and got help with this?
I truly think this would help them. they all have questions which I can't answer and they need answering to go forward.
Wishing you all a Happy Christmas and a wonderful new year. Love this forum and its inhabitants.
XX Nick
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MXman
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Air clearing conversations can sometimes be like an icy blast through the heart....but it is always good to have that honest appraisal of where you are all at (and if you think about it, you are now re-wired to be honest without meaning to..only fair everyone else gets a shot...!)
I would imagine that family therapy will be both available and helpful, although not everyone may be convinced of its benefits initially - I know my 12 year old son wouldn't be positive about such a suggestion for example so hope you get your boy to come as this whole experience must have been really tough for him.
As well as Headway you could try asking your GP whether there are any suitable NHS services. These will be able to answer technical BI related questions so might be most use. But failing that you could try an independent counsellor - you would have to pay in that case, but it might give you more options and choices. The relationship with the person is important so it is good to have a few avenues available to explore. Another idea would be to ask at your church if you are a regular - or your parish vicar if not. There is a whole network of Christian counsellors out there and many do things, especially short term/one offs for free.
Sounds like you have a wonderfully supportive gang there and I hope and pray you find someone to help you all move forward together - every blessing to you and to them for peace and joy this Christmas time and into 2016.
Thank you for your reply and yes I do have a wonderful supportive gang here which is fantastic. I was the strong one and was always helping them with decisions and this is coming back slowly buts its tough. My kids and my wife are very keen for some help and I left a message with headway this morning I've been talking to my local centre quite a bit so they will call back. Ill give that a go first and see how we go. God Bless and have a fantastic Christmas. X
Hi Random thats just so true with the rewiring bit I seem too be stroppy and don't let things go I'm like a stroppy teenager sometimes. I know theres a few problems there and my daughter said yesterday that one of the first real changes she noticed when I was in hospital was that I was very critical about people and that I was very verbal too. Theres been a few changes and I have to accept them. Have a good evening. X
You mention about getting stuck in behaviours or thoughts. I think many of us are familiar with this one.
Don't know if its any use to you but about a year into my journey I agreed with my husband that this was a problem along with inappropriately commenting on conversations.
The solution was for him to call my name in a flat firm voice.
This became a prompt/reminder for me and allowed me to step back.
I know it has saved a lot of aggravation.
It has also become more refined and includes "the look".
Lovenhugs
XoxoXoxo
PS The bonus is that it may only be a little thing but the family can be a positive constructive part of your journey .
Mmmm air clearing is great but follow it up with more discussions. Remembr as well although you acknowledge the changes it may take time to try and adjust back.
As for outside help initially I had very little help with dealing with the changes and my family virtually none.
Finding Headway was a big help as we all realised what was happening was actually real, sounds daft I know but true.
All help came flooding when me and my wife seperated. My wife and children were offered counceling which really hepled.
With this help ( plus specialist marrage counseling) we made it through.
My children are now all grown up but my bi is an open subject and we often still review my progress. Seems a strange thing to do to some but its just part of all our lives now.
Keep talking and all the best adjusting to this new life.
I haven't stopped talking and I love chatting on here its been a real help to me, I just want to help my family come to terms with their journeys now too. Im sure for them to talk to headway will help. X N
Hey Nick, I think you are so lucky to have a family that can actually sit down together and tell it as it is. I wish we could have done this regularly and I might have been able to stop or try to modify some of my inappropriate behaviours earlier on.
Yes I was like that a lot, it goes from being funny to being down right rude, I didn't have a filter from brain to mouth, I still struggle with this especially when I'm tired or anxious or not feeling well.
Yes I'm very lucky with my family they are awesome. I love what you said about a filter from brain to mouth, ill be using that one for sure. It is inappropriate sometimes my behaviour but I just can't help it. That filter doesn't work sometimes especially with brain fatigue. N X
hey nick yeh its important you and your wife go to headway, the kids wont be able to but your wife will get to meet others who have had bi and the poor devils who put up with us.some heaways offer a councilling service, personally you wouldnt get me going to see one because what do they know , they havent got a bi.
like you my brain is in my tongue and i just come out with things.
ive [text edited by admin] looked into someones shopping trolley said no wonder there so fat, got a couple of plums dangled them and asked her if she wanted to gum my plums in the middle of a supermarket.
never used to be rude but thats the way i am now.
fortunately my daughter lives and works in dubai so we dont see each other that often although my wife and daughter skype each week.
i have mood swings and get angry for no apparent reason, im noise intollerant........the old steve is no longer...........the birth of the new steve is frightening but exciting all the same......
merry xmas and a happy new year to you and yours nick
You sound to be a bit on the tourettes type scale - what help have you had with this ?
I don't feel that I am offensive in any way but have certainly noticed that I sometimes do a running commentary on what I see, get openly excited about things more, fiddle with things more and have caught myself humming/singing when out around shops. I think my worst offence was noticing a man going past me with some lovely ripe tomatoes in his trolley, prompting an an excited, random ' Oooh, lovely tomatoes !' from me. Gaffa tape required ! He did look at me like I was a bit odd, poor chap !
So I can feel a little like I have turned into the odd lady round town at times ( you can spot us from afar, muttering and fiddling, with the odd exclamation, and would probably previously have thought to yourself ' hmm, not quite right !' )
In some ways, I am more relaxed and open , as I could be painfully shy before. I can still do 'subtle' if I absolutely have to and am concentrating ! x
subtle whats that? i see a psychiatrist and have been seen by a neuro psychiatrist who diagnosed me as being on the adhd scale due to my lack of concentration.....i have several things on the go at one time.
as for any other help my wife and i go to the monthly headway meetings and have made good friends.
my wife ( we ve been married 36 yrs ) is very patient with me, however if do something naughty she will tell me off and say my actions or comments are inappropriate.
Yes iv given them a call and ill try again today, I thought there was a headway meeting tonight in Eastbourne local to me but there isn't not to worry next year will do. Have a fantastic Wednesday. XX N
Absolutely had me in stitches Steve, Iv woken everyone up this morning with my laughter, [post edited by admin], sorry but thats the sort of stuff that tickles me and I'm just like that now. The plumbs storey is hilarious too. I was always a bit close to the edge you know wouldn't be afraid to tell it like it is but now it just comes out and as Danslatete said the filter from my brain to my mouth just does not function sometime I really have to try and stop and think before I speak.
You could be right there councillors don't have brain injuries so they wouldn't have a clue what its like but Ill give headway a go and theres a Headweay meeting close to me tomorrow night so Ill go there too. First one so a bit nervous.
I always swore (part of the builders vocabulary) but I swear more now even with out thinking about it, one thing I have noticed os that I can spell better...?
mxman man would have loved to to have read the unedited version ( eh admin?).
i just sat their first couple of months ( since my bi i have a problem with strangers, so my wife tends to do all the talking ). you ll need to take a list of medication with you.
I get it, I do. 'Before', I was funny, in an unpredictable "Oh, Gods, what's she up to now?" sort of way. In the sort of way that I'd leave a plastic rat in the drawer where my colleague keeps her spare staples, and repeatedly empty her stapler, or start doing press-ups on the office floor because I was bored of the other women in there banging on about their Slimming World points.
Now, I'm really, really quiet, much more so than before, because I recognise that most of my first-impulses are rude/offensive/likely to receive a punch in the face as a reply. Add in the aphasia that's worse when I'm fatigued, and I barely speak at all.
I tested myself yesterday, by going to the BIG supermarket, on my own, so there was nobody to give me a frowny-scowl to pull me back if I started going a bit wonky. Bloody horrible, but, that's what I expected a few days before Christmas, and that's what I was trying to show myself I could do. I did it, I didn't scream expletives at the people who left their trolleys diagonally across the aisles, I waited for them to move. I didn't howl with rage every time somebody stopped-dead in front of me. (For context, I've always been weird about physical contact and proximity to other people, being in crowded places has always been horrible.) I didn't 'tut' at people who were standing in front of the things I wanted to get to, checking their mobiles, or their shopping lists, and I didn't yell "GIVE HER ALL THE VOUCHERS AT ONCE, YOU MUPPET, I WANT TO GET OUT OF HERE TODAY!" at the woman in front of me at the checkout.
A decade of teaching stroppy adolescents to stop-think-act, not just react, has served me well, but, bloody hell, it's draining.
I managed to get my local Headway branch to work with an older student who has a brain-injured parent, and, today, I get to phone the parent of a 12 year old boy who had a stroke during surgery for something else, to try to sort out some home-tuition... I'm not managing to 'Worzel' my work-head very well. Work-head on, are the kids' schools offering them any support? A brain injury isn't quite like recovery from 'other' surgery, in that, as we've discussed, we don't 're'-cover as such, we just adapt. Might help the kids if they have someone 'outside' to talk to? For you and the wife, there's Headway?
I think a lot of us have found our filters have changed since BI.
In some ways, being more open and relaxed is better for me, as I could be very shy previously. I think having to deal with memory /concentration and obvious physical issues can harden your resilience and make you less bothered by what others think of you, in itself. After a time, sense of embarrassment with repeated gaffs in memory, stuttering/word loss/odd movements has been toned down. If it hadn't, I would still be stuck at the stage of not going anywhere public for fear of how others might perceive me and a miserable life that would be.
I don't think I am outright offensive ( I hope not ! ) but do find I am more liberal with general commentary, excitement, fiddling with things, humming etc in public. There is not that same division between private and public behaviour anymore - blurred lines.
My son is quite shy and possibly rather mortified with me at times ! Luckily my partner is very chilled and accepts my sometimes ' eccentric ' behaviour' with good humour : )
There are far worse things than being compelled to sing 'major com' ,Bowie style every time I go past the intercom ( which is labelled 'major com', hence it tickles me ) in Morrison's or commenting joyfully on someone's 'lovely tomatoes' in the trolley next to mine !
I suppose to us, our behaviour is normal. Our previous selves, as onlookers would no doubt have viewed it differently ! Maybe I am a bit of a space 'oddity' these days but I am happy enough : )
Things do happen and you can't always take them back.
On the physical side, I have got so used to stretching/ massaging spasming muscles when they start to hurt that I find myself continuing this in public - randomly stopping to give my thigh a good old wobble about with both hands in Boots recently, not realising how odd this must look until I looked up and noticed people staring. I simply forget I am in public and should try to be more subtle with my adjustments !
whats amazing is that I never knew this stuff until I came on here and gained knowledge about it. Different versions and acceptance and filters and it all starts to make sense. XX
angela i have a new favorite saying, it used to be, but for the grace of god go i, my new saying wheni remember is, oh yes, disability is not always visible.
dont be embarassed you cant help it.
one thing i will say.....great taste in music. bowie recorded major com in 69 under the name of david jones but had to change it because of a certain member of the band the monkeys
It so great to know I'm Normal here in the Headway world. Even my family don't find stuff I find funny, i guess they can't change me (I don't want to change anyway)
Onwards and upwards. XX
Hi Mxman
I am 8 years post b.i. and now, and for sometime, I am able to be more like I was pre b.i. I actually can think before I speak, not always, but mostly thank goodness 👍
For the first couple of years post b.i. i didn't think I just said what I thought. My family used to say.....She's had the truth serum again.....
I used to be a great thinker, shy, quite and only took part in conversations if I felt confident about the subject matter. Now I get more involved, talk more, add my thoughts, etc.....And on the whole I do think before I speak.
One thing post b.i. everyone loves about me, is my sense of humour. I would
never have joked before but now I do it all the time. I love making people laugh
if I can 😃. There's not many positives from having a B.I but my humour it is one of the best things it has given me.
It takes time to adjust post B.I. to the changes to our brains Nick. You know...stage 1,2,3 etc.....
Some four plus years after a lot of problems, lack of help, a near marriage break up I eventually saw a Neuropsychologist. This was the best thing for me and my husband of 36 years (childhood sweet hearts) She (N.P) was quite willing to have a meeting and speak to members of my immediate and close family. But, bless my husband he did the meeting instead. He took my neuro reports, headway leaflets, booklets and even the James cracknel book he and his wife had written after his brain injury.
They (family) knew I had problems, but because they couldn't "see them" didn't fully understand. (Like many B.I sufferers I lost family and friends)
Oh boy! what a difference for the family (who stayed around )having actual reports etc.... to read
It seems like they believe me now, and life began again for me and I got most of my family back 😃
B.I. Is a difficult, long term and never ending process. Take all the help you can get.
Happy Christmas Nick to you and yours and my very best wishes for 2016
Hi Joanne, Wow what a lovely reply. Love what you said about the truth serum I'm just the same and this is quite a new thing, well to me. As I said in the opening post I was told in the hospital my my wife and kids that I was very critical of people and instead of thinking your fat and hairy would just say it... Nothing at all agains fat and hairy people just an example. My wife stopped me in my tracks last night by shout NICK when I was being offensive and it worked, another suggestion in this thread.
I am going to show my family this thread as I really think it will help them. Did you have to pay for your Neuropsychologist or did you go through the NHS as I think this could be a way forward for me.
My family have stuck by me but its difficult as they don't really understand as my wife says my mum and dad don't live with me and this a different ball game all together.
Acceptance and thinking before I speak is what I'm going to try and do.
God bless and have a fantastic Wednesday. XX
Hi Nick,
Glad the post is helpful.....
After a check up visit to my consultant at Sheffield Hallamshire, he could clearly see I wasn't coping. He recommended a Neuropsychologist and through our GP we eventually got one.
I can wholly recommend this form of treatment. It not only helped family, but it MASSIVLEY helped me and hubby.
The neuro tests determined which pathways in my brain were working or not.
I am a person who has to have a reason "why" and we were amazed and shocked at my results. We found out the damaged caused to my brains pathways were the major reason I was.......rude, offensive, nasty, fatigued, hiding away from people, not coping with noise, being very nervous, crying at the slightest thing.....etc etc....
I had almost a year of NP visits, which is well over recommended time. I think it's usually around 3 months. But because of my lack of aftercare (long story) I was
eventually treated very well.
Nick this form of treatment WILL definitely benefit you and yours. I do hope your GP
can get you on the list.
Just to add....When I spoke to headway they asked the right questions and sent me the
appropriate literature which was really helpful. One of which was for my GP....called
'General Practioner understanding brain injury' (something like that)
Headway told me to remember your G.P. is a General Practitioner and knows a little about everything......e.g A little about brain injury. Therefore we didn't mind taking the leaflets to the GP and pointing out where we had been advised we may need help.
My wife spoke to the local headway office today and spoke to one of the councillors and it really helped her, they are going to to meet up with the councillor in the new year. Ill chat to my GP in the new year too about what you have suggested.
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