Just wondering if there were any support groups of people who had a TBI but it no longer affects them ?

[bexx87]

Just wondering if there were any support groups of people who had a TBI but it no longer affects them ?

[bikerlifestyle]

to that i would say that, why then would they need a support group?

and the very fact they need a support group probably means it does still affect them in some way shape or form

and in that case, well its already here

i just read it back and i feel it sounds like i am being sarcastic, but i am not, what i am saying that if the brain injury was a non issue then i cant see what sort of support is needed, but if it is an issue however minor then you are in the right place here

non of us here worry about the level the injury affects others and there is no competition as to who has the worst injury.

we are all in the same boat

[bexx87 in reply to bikerlifestyle]

I do have issues but ive managed to find work arounds it just hurts so much knowing that ive had a tbi but because im not effected by it any more besides emotionally means im viewed as a person who hadnt had a tbi and I cant understand why im in a fit of tears over it when its meant to be a 'good thing'

[bikerlifestyle in reply to bexx87]

the emotional damage is as bad as any physical damage if not worse

i don't think you are over it

we all have emotional issues and scars from this which affects us in many ways, so i think you are exactly in the right place here, just because there is no physical symptom to put a name on, doesn't mean that the issues ain't there.

we wont give upon ya

[Kirk5w7]

I lend my support here, I think I know where you are coming from, it's great you can get on with your life, but your trauma has redefined you, we will support all we can, the emotional strain is huge, keep on talking things through, it's not like a cold or cough, we do understand xxx Janet

[bexx87]

Thank you both I cant understand why I feel so alone

[bikerlifestyle in reply to bexx87]

loneliness is something we all struggle with, even when we are surrounded by other people,

depression, anxiety, stress all these make you question yourself and you feel ever more alone, i really wish i had more to offer, other than the inderstanding that you have kindred spirits here who atr living it with you and truly understand how you feel

[cat3]

Hi bexx. You have a classic 'Invisible illness' as so many here do, so you'll neither be judged nor underestimated. Some on this forum have been severely affected, whilst others like you and me, have no outward signs of damage. But we're all equal here and have equal respect for one another, It's what we do. Welcome, bexx. xx

[SAMBS]

Hi Bexx, Biker & Kirk 5W7 - my TBI was in March this year, about 3 weeks after I left my husband so i live alone in apartment with no proper facilities to cook or wardrobe to hang clothes in except on bed! Have spent lots of months trying to get help from local Social Worker - all to no avail despite promises for assistance in providing these due to financial circumstances as only had state pension to live on . Just had all my 6 months after tests, 1-2 weeks ago. blood, eyes and brain scan - all specialists happy with results so yes physically I'm much better - cat scan to come in 1 years time (except hearing is still very woolly) but I can totally relate to you Bexx - cos I walk and talk they all think there's no problem - but confusion, forgetfulness and frustration are my daily life now. I've just found a new home to rent, 500 kms from where I have been living - so must return in 1 week to organise alone packing up and all that entails as well as arranging for new utility services at my new home. I go to sign the documents tomorrow for the new place - and it all scares the life out of me - when before my TBI I think !would have coped 100%. I've know I've undergone a complete personality change, getting worse the more time goes on - so while I continue to improve physically - I get worse week by week emotionally/mentally and like you feel totally alone and alo so lonely. I try to contribute to Headway forum because when i read about other peoples situations which are worse than mine it makes me feel better for a little wile - but then afterwrds I'm bck in lmbo with nowhere to go.

[Kirk5w7 in reply to SAMBS]

Hi SAMBS, you are doing so well, it must be so much harder on your own, when I have to deal with difficult issues its like my brain shuts down, my sight gets dimmer and my thought processes deteriorate, I have had to tell people on the phone I'll ring them back when I can deal with things before now, my speech goes too. It is so frustrating, I used to hold down a very responsible job before, but hey ho c'est la vie. I try to concentrate on looking after the mental aspects now, the physical ones will come hopefully. Look after yourself, take care, Love Janet xxx

[SAMBS in reply to Kirk5w7]

Thank you Janet, I appreciate yours and other comments here tonight. I wish I could be as positive as Biker and CW2002, about everything, but like so many others here I also had a life where b4 I was a capable, competent, responsible working adult in the UK. Now at 66 years of age, a separated woman now living alone in a foreign country, where all things administrative have to be dealt with in a forign language (french) which is not my native language or one I'm fluent in, prior to TBI it was never a problem for me and I could get by. Here in France even the medical system does not appear to recognise there are problems after a TBI. My own [french] doctor's answer (after my nervous breakdown) is take tranqs or go see a psychiatrist and tell him/her how I feel. Does anyone have confidence to think a french psychiatrist would understand an english mindset cos I certainly don't - even if I could explain in french which I can't! Biker I'm convinced I wouldn't feel this bad/sad or self-pitying if this had happened when I was living in UK! The fact that my husband l(we were married 46 years this year) and lives alone now only a few kms from me in our marital home and really couldn't give a toss about what's happened and is also making demands for repayment of essential financial assistance I needed earlier this year, doesn't help either! So its not easy to be as positive emotionally/mentally. as you suggest. I hope that that positivity will come to me, but its just not there yet - I still have too many mountains to climb! I'm sorry Biker I probably responded badly to your comments -just having read them again after typing this and I do appreciate your concerns and realise now you were being understanding of my difficlties - perhaps I should not stay up this late on the computer trying to make sense of everthing - again m thanks for your support. x

[Hidden in reply to SAMBS]

My TBI was in 1967 .... since then I' just blustered through, one thing at a time. If something is particularly different/difficult I put it to paper to see how it looks there.

What's the worst that will happen if you do it wrong? You do it again. If anyone makes a nasty comment give them the two word speech ...... last word is 'off.'

Don't let others wind you up, you do stuff how you want to do it and at your speed and comfort.

After around ten years I found things were much easier, but each recovery is different. Good Luck [Why France]?

[SAMBS in reply to Hidden]

Hi Brainedat17. Why France? because we both love the country, the weather and the lifestyle i.e. the french way of life - everything down here in Languedoc Roussillon is so much more relaxed and laid back - well it was till marriage went catastrophically wrong. I integrated well,learnt the language and had good friends english and french. Husband didn't - though he now says he loves it here and wants to stay - but I've no support from him since 16th March. After the TBI though no one out here understands the implications of all the emotional stuff that goes on - not doctor, Neuro specialists nor uk / french friends but in france family look after their own, so that's why I value the understanding support from here and fellow members. My friends back in UK have been more emotionally supportive which also helps. However in 2 months I'm now going to move from the SW to the NW where my brother-in-law and his wife moved to this year. Thanks for reading.

[bikerlifestyle]

for what its worth, i go to the headway day centre funded by social services, we have everything from brain injury awareness to art to education, anyway there are plenty of people who attend the places who are normal looking, the look fine, they sound fine, but inside they struggle just like anyone with visible injuries, so please just because the physical aspects arnt there please dont think you are not worthy of help,

like i said in one of my previous posts i cannot remember what they said my my brain injury is just that there are multiple pockets and i dont really care, its the symptoms that define my injury not the title so if you have had a tbi and have symptoms or are struggling then you need help and you deserve help and don't let anyone say otherwise

[Hidden]

Hi Bexx. This is my first reply to anything I have read on these posts. I joined a little while back and most of the times I read anything I ended up in tears. The reason for reply is that this seems to be how I am too. I had encephalitis 5 years ago and though medically I am fine (some scarring left behind) I have changed. The one thing I am wanting to have more of is emotional support and would like others in my life to realise I have changed. I have discovered recovery can be a long process and isn't always easy to acknowledge the changes that have happened, but I take one day at a time. Hope you find some comfort from this site.

[Kirk5w7]

Hi, loloumoi, it's not easy finding someone who suffered encephalitis, like you I have survived, outwardly with no effects, but having just filled in my ESA form for the second time, this time realistically, not optimistically, and come out of the resulting depression, I still find it difficult to grasp the way my life has changed. When I see the shock on each new doctor I encounter, because I have recovered so well, evidently most encephalitis sufferers die or are left with severe impairments!!!, it's still difficult to feel "lucky". But each day is a new opportunity, my garden has benefitted from the extra attention this year, its just so hard to be patient now and listen to my body's limitations. Take care Love Janet xxxxx

[CW2002]

Hi, I don't very often put replys on here but read what's on here regularly. I think this is common in people who have had a TBI to have these problems but there seems little help for us as we do look and sound ok. Life is difficult and I think after a TBI tolerance to things is much more fragile, easy to become upset, sad, depressed etc. I think I have accepted what happened to me in the last year or so(its taken a long time)and try different things which may help like exercise tablets or just coming on here.

It's hard sometimes but things could be worse think of the positive things in life.

[bikerlifestyle in reply to CW2002]

welcome to the group mate and may you have many more posts

[pollyanne]

Have you a local ABI team? My OH has just helped to set up a local support group with their staff. They had a first meeting last week , only a small group but from what OH said it was informative and good to meet others 'in the same boat' who knew the problems etc and could share advice. Worth contacting your local hospital to see if anything like this exists near you.

[Hidden]

My hubby had a TBI in June 2012 and from a very difficult start when he couldn't walk or be fed and had no short term memory - he has made an amazing recovery in "physical" terms.

To the outside world - he is kind of how you describe, a fully recovered person who had a brain injury that no longer affects them.

In reality that could be not be further from the truth. He and I have survived but lead a very different life now and have had to learn to get to know each other again.

Socialisation is a big issue, too much noise in a room and his brain cannot handle it so he needs to go outside. Too many things going on and it is the same. So we avoid social events other than the two of us and sometimes our children. This can be difficult and isolating sometimes. He needs to spend a lot of time on his own but does not mean that he doesn't need people.

Emotions are difficult for him - empathy is difficult for him - so sometimes my man can act as if he doesn't care or isn't interested in anything outside of his own personal world. I know this isn't true but even so there are days when I can be left feeling lonely and that can frustrate him. Trying to explain that to somebody not involved with brain injury is nigh on impossible others can think that he just cannot be bothered. When we try to explain to those not affected - even my brother who I was very close to - we are met with blank looks.

So we avoid explaining as it falls on deaf ears.

Occasionally there are still memory issues but we work around this.

So to the outside world I think we appear as if we are a touch antisocial and we should be grateful for "full" recovery and just return to how we were. Everybody thinks we are simply making excuses when not turning up to social stuff and give up on us (so were they really friends?)

Sometimes a lonely and frustrating place for both of us to be in our different ways - other times our sanctuary because they all leave us alone and we can move forward at our pace without explaining ourselves.

We are moving to a new area soon - 200 miles away. So we will choose how and when to rebuild a new social circle - or not. Scary in some ways but a relief in other ways as people do not know the old us.

I don't really have an answer to your question re support groups - the only one we use is the on line Headway community here which is very helpful and retains our sanity. However I agree with others that support is still required and this is a good place to start.

However - don't be afraid to say that you have not recovered. A TBI can be a lifelong condition that those affected have to deal with forever. The physical fix can sometimes be the easy part but the invisible emotional elements are the killers.

I hope somebody in your area can suggest something for you and that you find the help that you want soon.

Thinking about you.

[Aelfwyn]

Hi bexx and everyone. I haven't commented for a while but this discussion is striking a very loud chord with me. I am 'better' after my TBI 3 years ago. I know how lucky I am. But I also know that I am not quite the same as I was, and also that it was unbelievably hard to get this far.

All the stuff about feeling isolated/ invisible injury can feel very true sometimes. Also the intolerance to noise and stimuli (which my other half finds hard) and the memory gaps etc. The great thing about the Headway forum is that it's the one place where there's always someone who understands! There's no support group near me (and I'm not sure how good I'd be at going along even if there were one) so I rely on this online network for knowing I'm not alone in how I feel about TBI. The psychological fallout from the accident looks like lasting longer than I thought. I am guessing that might be true for you, too, Bexx.

All the best.