Hi. I haven't posted anything for a long while, but i keep 'digging in and having a look at what people are talking about - its been such a help to me.
One of the posts i have been reading is about the alone feeling when you have friends/loved ones near.
I am struggling to understand what this feeling is.
When my husband talks to me it feels as if he is talking from behind a plane of glass and i am near but can't get near enough to 'be in contact' with him.
Will I always feel alone now ?
Jules Getting There
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Julesgettingthere
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I used to feel that I was on the outside looking into another world that I knew I was part of but didn't feel I was truly there. That has passed now, I'm finally in the here and now I don't know when it happened it just did, one day I realised I felt more like me.
I have photographs taken on my 60th birthday by a photographer, and when I look at them I can see an emptiness in me, much like I felt at the time, very strange but I persevered and here I am, the real me thank goodness, it was frightening when I thought that might have been the rest of my life, so hang on in there it took more than 2 years for me, hopefully you will find it rectifies itself quicker for you, best wishes Janet xxxx
It has been four years on 12 October this year. I know this will sound odd, but I have a horrible feeling I died and she is gone and I replaced her somehow. I don't get as angry about it these days, I am thinking about accepting it. And again, i have a strange notion that maybe i am not living up to what she was - i am trying. Does that sound 'mental' ? x
No it sounds fine to me, I couldn't explain how I felt to others, I could hear myself talking and see I was doing things but I felt so detached, like it wasn't me at all.
I still have problems looking into mirrors, I don't like what I see, like it's not me that's looking back, very peculiar, is that anything like you feel?
I'm off swimming now so it may be a while before I reply again.
I don't like what I see either, it's not just an ageing thing, I have problems with detail too when I'm looking at things, I have to look very hard, I don't notice dirty marks on things or that the carpet needs vacuuming, I feel guilty about that cos it means my hubby often beats me to the cleaning etc, when I always did it, but why should I feel guilty? It's just role reversal now but I cant explain why it bothers me. My eyesight was affected too see but it's taken a while to pinpoint the problem because my eyes act normally in an eye test it's the wiring in my brain that's gone haywire, so all the things like sudokus and paint by numbers irritate the hell out of me but I keep on trying and slowly things are improving.
It's not you being shallow it could be your perceptions have been alteredxxx Janet
your all right i m not me i feel like strangerim phyical mess to i aviod it if i can i wish anger frustration will go wheres me gone id rather be dead than this strange nutty person i been told never get use back arm hand so i can never be me im not depressed just want to be dead, ill swap my body for me back if i can so your not on woen with your not in your own body mind
That was how I used to feel. Things do get more normal as time passes. I had to go thru the grieving of my old self but really as time passes then you start to slowly take the focus off how you used to be and start accepting and liking your new self. I hope that makes sense?! Antoinette.
you can't go back can you - you can't 'get back in'. I always believed that if you worked hard enough you would get to where you need to be. I have tried so hard. I cannot understand why the people i loved just accepted things would be different for me after the accident. It feels like being betrayed. I don't want to just accept this life and get no further than what i am now. In lost everything that 'made ME'. I feel like a wrapped Christmas present with nothing inside of any value, peoples expectation of their being something inside and the disappointment when there's nothing.
Your posts fill me with such strong emotion Jules. You sound so lost and lonely. I do go through those periods when I feel I've lost everything of meaning ; then at other times I feel more like my old self and can be quite productive.
I've been medically retired since before my bi but always needed to be active & productive, but frequently get 'burn-out' as, when I'm up to tackling things, I feel it's a race to do as much as possible then can't seem to stop, even when shattered.
You say your work defined who you were, and now there's nothing to fill that void you can't move on. But you seem to be still in the grieving process and, until you let go of that grief, moving on will remain a big problem.
Have you had any help, Jules, in working through this difficult period ; like counselling or cognitive therapy ? Talking openly with a therapist over a period of weeks/months often produces interesting and useful conclusions. I used to reject 'talking therapy' as nonsense 'til I needed help with a bereavement, which proved to be so, so helpful.
Of course there's medication, which is a person issue, but which can (and did for me) turn your life around.
I am trying with therapy but i cant talk about it yet - i can talk about the facts that i have been told and list my injuries to the consultants, but i cant talk about it. I don't really know what IT is yet. I am frightened if i manage to talk about it nobody wil be there to catch me when i fall. I am frightened of remembering. x
Oh wow, that's very revealing. I'd gathered that you're a lady of few words from previous posts but this explains it. Please Jules don't stay in that dark place ; there will always be someone here ready to catch you and you know (don't you) that talking will probably, gradually bring you from behind that 'pane of glass' that you. yourself, have created as a means of protection.
Embrace the therapy and talk, talk, talk. Release any lurking emotions ; tears, anger, everything. I'm so pleased you're getting help.................... and stay close to us here.
Can I add to Cat's reply that I'm still on anti depressants they put me on a low dose of citalopram while I was still in hospital, my son asked them to cos he knew I'd been on them on and off for a while and I was so agitated when I first came out of the coma. So I can sing their praises.
I'm also medically retired and I fill my days, energy and concentration permitting with craft projects,I'm starting xmas presents soon plus I'm going to make my own Xmas cards soon.
Not how I envisaged my life but ........... I do a bit of gardening too, grow some veg, not very good with flowers, how's that for an ex-florist!
I have a lot of things I still want to try, would love to try jewellery making with precious metal clay and I have a marquetry kit my son bought me last Xmas that I've not felt ready to tackle yet.
Only so many useful hours in a day
But don't forget we're here for you when you need us xxxx Janet
before the accident the only things i loved in life were my motorcycle, my family, animals and work. My family are still here, but everything has gone. I think hard to find something i enjoy and there isn't anything.
Hey, I have just thought, thats not true, because i am enjoying speaking to you and the others on this site. Well well... x
I think after brain injury, we all feel alone on different levels. I felt alone for varying reasons.
a) I was the only one in my immediate circle of family and friends who could possibly know what I was feeling
and,
b) As the weeks turned into months and years, I became steadily more alone as the 'friends' drifted away for God only knows what reasons, not one of them had the guts to tell me. But, I knew.
I think 'alone' vanishes once you have come to terms with the new you, or got as near as you possibly can to that acceptance. It aint easy, it's no walk in the park and there will always be a hurdle to some degree. However, where it was once seeming insurmountable, soon that hurdle becomes a barrier you can step over and get on with your life
Another one of my lengthy waffles, hope it didn't bore too much
like you Jules just dipping in/out now - about all I can be bothered to do - also just read a post asking if people thought about writing their story!
Guess I pretty much wrote my story one way or another last and earlier this year - got some great support from people here- now what disappoints me most is one person in particular here, never responds if I write anything, when we had pm'd each other before. Suddenly I became persona non-grata and don't know why anymore! Why it should upset me I don't know - but it does!
All I will say is, I know the circumstances of my BI, (compounded by a fall backwards, and car accident, within following 8 months) were nothing like as bad as most others. I was find by comparison, till after the car accident - its only the following months that made my balance, vision,memory/appetite/.
But I will defy anyone to cope alone in a foreign country/culture/language with no medical/family support and when essential and needed and not feel sorry for themselves - especially after a67 year lifetime of years of always coping and managing to resolve and sort situations/problems.
I finally started getting some medical support earlier this year - not to help with above effects but to look into my blood disorder. Last Thursday I had a fibroscopie - oesophagus/stomach/duodenum and its been confirmed I have viral hepatitis - all down to liver and mri/ecographies I had 2 & 3 weeks before that! still waiting for results of huge blood test day after fibroscopie. Everything medical has happened since blood disorder diagnosis 2 years ago and SAH last year.
As I said, I defy anyone to cope alone abroad and to stay upbeat, not self-pitying - when one bad thing follows another, 67 years old, a lifetime of experience and its mostly out of your control then and now. As for everyone else, thanks for your previous support.
HI SAMBS. I am sorry, sounds like you have had a rough time, but you sound a very strong lady :). Not easy living abroad. I am sure we talked last year when you where living in England for a while. Great you are getting medical support. I think I spoke to you as a family member was totally unsupported. I have accepted it now. Life especially in brain injury is too surround yourself in positive people. Take care. If you want a chat message me Xx
Oh SAMBS what a crappy time you have been having. I have often wondered how you were. I don't come on here much now as Victoria is now doing so much better. I have a read now and again. I actually think I suffered PTS after her accident ie. about 10 months after I just couldn't stop crying and my every waking moment was back to that horrible night. I have talked at length to a very dear friend of mine and this has seemed to work wonders for me. I'm just worried for Victoria's 'next steps' now tho. The whole driving thing. She has said a couple of times she thinks she will get another car and I am terrified but I have to let her go don't I. Listen to me babbling on and taking over someone else's post. I suppose that's what this forum does (makes you want to off load) ;-).
Keep positive SAMBS and it's great to hear from you again. Sending love and best wishes. Jo xxxxx
IT'S HORRIBLE WHEN PEOPLE JUST DISAPPEAR INTO THE ETHER WITH NO EXPLANATION. IF THEY'VE BEEN A FRIEND IT'S BAFFLING. WHEN 2 REALLY GOOD ONES DISAPPEARED THE MOMENT I HAD THIS" MAL A LA TETE" I THOUGHT S*D THEM, IT'S THEIR LOSS. STILL HURT THOUGH SO I KNOW WHERE YOU'RE COMING FROM.
I THINK YOU'RE REALLY COURAGEOUS DEALING WITH THIS WHERE YOU ARE. HAVE YOU NEVER BEEN TEMPTED TO COME BACK OR WOULD THAT MAKE LIFE MORE DIFFICULT?
you sound as if you have had a bad run of things. This site has probably helped more people than it will ever know. Its amazing how different people are, but it seems everyone after a TBI becomes a certain breed - a wonderful group of honest caring people
X
Hi there I am so sorry to read your message and to know how sad you are feeling? And how alone you are feeling.
Have you tried explaining this to your husband? Have you asked him how he is feeling?
I too feel alone sometimes and feel that I cannot reach my husband. Feel that I want to be who I was. I am sad that we say no to so many social events because it is too hard and I miss the friends we don't see anymore.
I guess my story differs to yours slightly in that I did not have the brain injury my husband did.
If you chat you may find that you have something in common.
It is heartbreaking for both of you.
In our case we are two years on from the injury. There have been many improvements and we have made many changes. We have given up work, we have moved 200 miles away from the place of my birth and my family, we have a dog.......
We now have many happy moments as we grow in to our new normal but we both have a "gap" we both have something missing that on bad days we yearn for. We accept these for what they are then look at what we have instead but it is hard.
But we have a chance to get to know ourselves again and to know each other again and we are making the most if it
We try doing new things together.
Life will never be perfect but then if we are really honest and look back, was it ever perfect or do we see what was through rose tinted spectacles?
We feel happy again but it has taken a lot of hard work and acceptance on both sides. Before we could accept each other again we each had to accept ourselves again, which is a challenge.
How long has it been since the accident? Have you talked to each other? Have you had some couples counselling to help?
Are there new things that you could do together that might connect you in a way that conversation can't?
New things might bring new friends too?
Have you had some help for you to feel good about you and to recognise all your strengths that can sometimes get hidden by grief and recovery?
Have you tried Mindfulness it can really help you come to terms with just how it is and then let you move on to whatever may be?
I am sorry I have rambled a little
Don't give up hope, you have a life which will be different but will get better xxxx
No you will not always feel alone, it does get better. It was trial and error for me. my improvement came after referral to neuropsychologist . I felt as if I was going mad, tearful, angry, but neuropsychologist firstly completed a cognitive assessment . a good assessment cannot be done in a day in my opinion, but that is just my experience as a brief one I had previously did not highlight the problems the second test. I clarified my problem areas, but implemented strategies to improve. My partner came to some sessions, which gave him insight. I.e. He knows to say in short, definite sentences, to not to confuse me.
somebody else in this thread mentioned looking at photographs and seeing a glazed look, or empty behind the eyes. I see that in my photographs, and I attended a talk with a BI talking on stage, and he too had the empty behind the eyes, and grey under the eyes. It is like I lost something, but not sure what, but I do know what you mean when you feel you lost your soul .
After my trauma I felt empty and alone still do I wish I was getting there, I wish I could give you an answer I don't think there is a magic bullet for us but you never know one thing may trigger the result you are seeking you just have to keep looking,
Jules so much of what you have written in this thread resonates with me. It is 8 years since my accident and I still have times when the disconnect is acute but for the most part life drifts on.
Acceptance does not come easy ...I too had this sense that the real me had actually died and nobody realised that in her place was this shell who walked and talked through each day pretending to be me. I didn't really understand what had happened because on the surface the world looked the same and yet somehow different. It felt like I had landed in a foreign country with no idea of the customs or the language. I was scared I had gone totally nuts and that people would find out what a fraud I was and avoided people as much as possible in case my crazy fakery was revealed. At the same time (after the initial recovery phase) I had this intense fear of accepting that this really was as good as it was going to get. I flatly refused to accept that life as I knew it was over and I railed against it for an uncomfortable age...
and then something clicked...I have no idea what or why but one day there was just a change.
Somewhere deep inside I realised that things were indeed different but that different did not necessarily need to be awful. There came this realisation that this WAS life part two. I was NOT the same person as I was before, life was different ...
but it also dawned on me that I had a rare and amazing opportunity to start over...
And so I began to accept the changes, to embrace them and to start to build a new life...one that I could live comfortably. Rather allow myself to be defined by what I did for a living or what happened to me, I decide what will define me...and that feels good.
I still have down days, I still have huge disconnects and I have days when I don't recognise the person staring back at me in the mirror... but they are less and less frequent as time passes and for the most part I am now comfortable in my own skin..and have been for a while now.
Hang in there Jules...use all and any support available to you ..you WILL get there
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