I survived TBI and now live independantly, wishing to make like minded friends with similar experiences, maybe even 4 holiday Any ideas??

I have not met anyone in a similar position as myself, even to compare notes with of my extraordinary experiences. Anyone out there? I now take full responsibility for myself including self-care,

PS I must stress I do NOT need counselling or psychotherapy of any description as already been there. I just want to do what I want, with like minded people with similar experiences without anyone assuming a hierarchy, when none is actually present.

PPS I am a very young early 40;s gal.

21 Replies

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  • HAVE YOU EVER CONSIDERED JOINING A LOCAL HEADWAY GROUP ?

  • Hello

    Hope you've had a good day and thanks for your kind reply.

    I did go to some meetings years ago but it is a good idea to perhaps give it another go.

  • Hello

    Hope you've had a good day and thanks for your kind reply.

    I did go to some meetings years ago but it is a good idea to perhaps give it another go.

  • you will meet a lot of like minded people here too so this is a good first step, along with 100pipers suggestion too

  • Thanks for taking the time to reply.

    I already think this is a godsend just being on a 2nd time.

    Others have no idea what you are talking about.

  • i also feel i dont fit in anywhere im male and only 25 and my head injury stopped me being able 2 walk and speak. that makes me feel different from other people on here as im fairly independent but am in a wheelchair.

  • Hello nick_01

    I;m sorry you feel you don;t fit in anywhere, I know exactly what you mean. I think it is a major and amazing achievement when TBI survivors like us are able to be so self-supportive also maybe in spite of the hindrance from those in roles of so called help ( or whatever they call it now) .

    I believe it is a particular inexplicable inner strength some survivors find post injury on their personal path to recovery and speaking from my personal experience, is absolutely crucial ie to find something spectacular when wading through the mire of crap made by a majority of those employees in the general system. Not sure whether any significant improvements have been made= probably

    Is it stating the obvious that we will always, at least go through the stage of feelingw we never fit in, being in such a minority?

    Bye for now and enjoy your weekend,

  • Hello nick_01

    I;m sorry you feel you don;t fit in anywhere but I for one would love to read your thoughts etc on here as they;re as valid as any one else's.

    I know exactly what you mean. I think it is a major and amazing achievement when TBI survivors like us are able to be so self-supportive also maybe in spite of the hindrance from those in roles of so called help ( or whatever they call it now) .

    I believe it is a particular inexplicable inner strength some survivors find post injury on their personal path to recovery and speaking from my personal experience, is absolutely crucial ie to find something spectacular when wading through the mire of crap made by a majority of those employees in the general system. Not sure whether any significant improvements have been made= probably not.

    Is it stating the obvious that we will always, at least go through the stage of feelingw we never fit in cos we're in such a minority?

    Bye for now and enjoy your weekend,

  • I'm in a similar situation to you, I've never met anyone with a brain injury and most would assume i'm perfectly normal despite not being because my impairments are invisible. I've had psychological therapy (CBT) and it's only ever been a temporary solution which makes me sceptical of attempting more therapy, however i'm eager to improve my situation.

  • Hi AnthonyM

    Thank you jfor your reply.

    Your approach seems like mine regarding prioritising helping yourself (In my case too many people caused me further harm doing the opposite until I got rid and stopped having my intelligence insulted)

    I had Gestalt psychotherapy for several years and I found it really helpful but there are lots of other things that can help improve one's situation to be used in conjunction with any therapy (private therapist NOT from limited "NHS Counsellors" with their unhealthy projections) in the unending recovery path.

    I stilllof course have many hidden disabilities as youi similarly mention.

    I have made considerable recovery over 23 years and most definitely, time helps things but it cannot really heal things if that;s all we have to rely upon.

    Obviously in the recovery process different things work better for different people but maybe there is a common framework we can all think of, doing whatever activity we feel best addresses the particular need.For example, Need for relaxation some choose say a coffee and a chat and others gardening or music OR when addressing the need for feeling healthy self esteem, people get satisfaction and feel good about themselves in different ways like perhaps charity work or working towards a personal goal.

    But I think little positive changes can make a huge difference affecting many areas of our lives.

    Maybe, is one better off concentrating to put the therapeutic theory into practice in their daily routine life cos do you know it already, you will just be hearing it from another angle. People can actually have skills they are not consciously aware of and they achieve much more than they thought possible when they just give it a go, or sometimes where they feel forced into a situation.

    Hope any of this might have helped a tiny bit.

    Going now as I don t really want to be up til 2am again like last night lol

    Top of my head notes:- lol

    music, meditation, pets, gardening/nature-recognising your spiritual side, massage, dancing, chat with real friends. walking , (process of) proper self care before others'

    needs and wants, trusting your instincts./ remember there is only you that knows what feels right or wrong/

    Goodnight

  • In practise we have to get out there and live our lives in the real world not inside the pages of a text book, no matter how well it reads. And anyway no-one has a different step by step ,second by second manual written for them they can pick up and take out with them every day You know I;m sure AnthonyM, that you have to actually DO it yoursellf.

    IN MY HUMBLE OPINION!!

  • or of course your therapist won;t be accompanying you and holding your hand, at least metaphorically, and prompt you into doing the healthiest and best thing for your well being, eh

  • Unfortunately, that's the major drawback to therapy. The therapist can't ever watch you go about your daily endevours nor read your mind not least if it processes the same information differently. This fact alone make me reluctant to try anymore therapy. If ever you've been brain injured, demand to be seen by a neuropsychologist who are probably the closest to understanding you. They aren't are easy to get ahold of though, and at least in my case, GPs often will instead refer you to a standard run-of-the-mill psychologist.

  • I think I know what you're talking about. I feel so different to others that whilst I'm not longer afraid to meet people, there's no longer any point, I'm totally insensitive to sentiment, I don't understand social cues, the thought of social hierarchies repulse me, yet i'm suppose to act 'normal' and a part of a society that to be frankly honest doesn't care. My brain injury occured at a very critical part of my life, during the formative years, I was just 14 and it occured to a part of the brain still in formation, the right frontal lobe. So I basically learned to avoid all social interations, they caused me an incredible deal of stress and I didn't develop myself socially, I lost all my friends, my personality, aspirations. I can honestly say at 26 I still don't know who I am and why i'm here. As you point out, ordinary doctors and psychologists on the NHS are too quick to judge and suggest you require therapy designed to treat the oridinary folk with trivial problems. What I have is a brain injury that i'm still waiting to be treated.

  • Thanks for your replies.

    I know I felt so surprised and frustrated that I was receiving support and empathy on the whole from many paid workers-far too many. This did include a clinical neuropsychologist who was a bully to me on several occasions (who was contained in my big complaint to the Health Trust about my overall (S)care. )

    I think some of these lot so called specialists in brain injury revel in insulting you Eg saying what you are/should be feeling or behaving. Excuse me the expert in my injury is myself so don;t flatter yourself.

    One of the many narcissists not living in the real world abusing their power, as they view it, under the guise of rehabilitation, and I don't want to think how much they were paid. Held in high esteem in the community-"She's marvellous helping people like that". Wot a blinkin' joke being paid to trigger me feeling very much worse Well it certainly helped rehabilitate me with particular regard to what is really going on. Poor things. WHO do they think they are?

    From my experiences the right way forward for me was Gestalt psychotherapy/counselling part of which is expressing stored up feelings of hurt and such like.

    This is a very empowering experience that helped it to be easier for me to make decisions for myself instead of someone else who kidded themselves thinking they knew best.

    It helped me to be able to stand up for myself as I am sure you know much about us seen by society generally as pushovers, with feelings and opinions to be unheeded/ignored.

    You say you don;t know who you are and I too didn;t know- (most people don;t know who the real person they are is - Are they just the person they have been moulded into in childhood?)

    I initially went to the private Gestalt therapist and explained my situation, my thoughts, concerns, worries etc and she said she felt she could be of help. Then she asked me to go away and think about it- there is no pressure whatsoever, no obligation. I found it such a welcome change to have the opportunity to say my points, verbalise feelings-these and myself to be respected and to be taken proper notice of. This very seldom occurred with NHS workers, family or many pretend friends so it was a breath of fresh air.

    My guess is that a lot of clinical neglect occurs in many TBI cases; I think they still don;t have much of a clue with some of us particularly if they cannot fit us into a particular category or we don;t conform to something, at least theoretical that they are familiar with.

    Have you talked to your GP? If you did think about the Gestalt therapy approach make sure they are a member of the national professional body, can't recall the name off hand. I am sure the initial consultation would be free.

    Has anyone involved in your care/rehabilitation ever addressed developing your social skills?

    My experience around people is finding it hard to be myself and I link this for the most part, to the situation I was in leading to my injury. It is horrible being so afraid underneath even to be me.

    I hope a tiny bit is some good to you and I hope you are enjoying your weekend.

  • I have survived TBI, I'm 32, married with 2 young children! I'd live to meet people that have been through what I've been through! Ask me anything?

  • Hi Zoe

    Many thanks for your reply

    Love to chat more now but it is too late but please give me a clue what you have been through as it sounds intriguing.

    Enjoy your weekend and thanks again

  • Sorry didn't give you many details. I had a car accident nearly a year ago. No one else was involved, the police reason I had a rear tyre 'blow out' causing me to loose control, verve off the motorway into a ditch & roll several times. I was air lifted to Southampton hospital (ironically where I also work). I was in hospital for 6 weeks, but I don't remember anything about the first 3! I fractured my pelvis in 2 places, had TBI resulting in PTA, I have double vision and some memory problems. I still suffer with fatigue too. I have two girls aged 5 and nearly 2, so it has been really tough & tiring, but not meaning to sound like a cliche they have been my motivation & inspiration to get better. I have been back at work (phased return) for 2 months now & I'm really enjoying it, having adult interaction & it's given me a lot of confidence back. Tell me more about your story?

  • Thanks for your reply

    I;m pleased you are enjoying your return to work. . It sounds fabulous, I bet your girls are a great motivation.

    I have great difficulty getting and staying motivated especially when people that ought to be, don;t make things easier for me. Many years ago when I in my early 20;s I was visiously attacked unconscious and left for dead after being pushed out of a moving vehicle, attempted murder so the Police told me. Anyway I don;t want to be dramatic but those are the facts lol

    You are so right about the benefits of healthy adult interaction. I have got so much of my confidence back but it;s been a long process. Now I feel as good as I can making the best of a bad job-it is where I live I don;t like and it;s very inconvenient to my lifestyle.

    I'm on the opposite end of the scale not being fit enough to work ever (hasn;t stopped the DSS harrassing me-I have to go on a month;s retreat to retain my sanity amongst the blinkin idiots)

    Have a great week

  • That sounds horrendous, I can not imagine what you have been through. I am not surprised you have issues with motivation when you have been so massively affected by what has happened to you. Do you mind me asking where you live and why it is inconvenient? This week was the first time I have struggled at work, I'm getting frustrated with my memory and concentration levels. I've had a real 'I just want everything to be like it was' moment, which I now isn't constructive but I try not to feel too sorry for myself most of the time, but sometimes it gets to me. How have you been?

  • Hi Zoe

    I am so sorry I have been so late getting back to you.

    Thanks very much for your reply.

    I am on my retreat but where I am staying has no internet connection for me to use so I have managed to come out and check and send a couple of emails etc

    I live in a big Northern city but do not drive, like 80% of the people there do so public transport is extremely patchy and where I live it's rubbish so it means I have no freedom of mobility. The very infrequent transport is unreliable too so on top of everything else, I certainly do not need,what is at best, a huge inconvenience.

    I understand how frustrated you feel, re memory and concentration. If I need to focus all my attention on something even for 5 mins or sometimes less, I usually feel fatigued and if practical, have to go back home asap for a sleep.

    With memory I found practical aids can help, like lists, notes on inside your main door to ensure you don't forget to pick up something to take with you. When I forget something I try to think of a way around this for a next time-if I remember to do this of course!

    Have you any support from your employers to voice any concerns you may have?

    I know with massive changes I have felt, it is so easy to feel sorry for yourself especially if you have no really supportive famiy/friends structure around you early on. I learned to be self supportive; this took over 20 years but too much of my time I was unable to concentrate on my recovery for all manner of people intermittently getting in the way and making things so hard and even more debilitating for me.

    However I have come such a long way and I believe there is hope for us all with some self-belief, even if you (general) do not feel and can be confident.

    About wanting to be your former self- I went through this and maybe it is part of the recovery/healing process and now I even find positive aspects to acquiring my injury, as horrific as it was. This is as I have found out so much about people and personally grown in a way that I believe I never would have.

    I hope any bits of this help Zoe. Are you a northern lass too?

    Bye for now

    UNHID

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