upsetting times

[Dann2]

my life has got so small since brain injury. I cannot function or socialise properly. i see others having a great fulfilling life and i just want to give up as i can’t get any of it. Just want to scream and not live this way anymore.

[Fificakes2]

Hey Dann, I kind of know the feeling. It's awful losing friends and your social circle after a TBi. But it's all part of the bigger thing, because you've changed and I can't handle busy noisy atmosphere, that I used to love and be central to everything. But I don't want to be there anymore. It's hard to accept and let go of who you were and yes you can feel like giving up, but just give yourself time to adjust. Take care and it'll get better.

[Vickerli]

Hi Dann,

I, too, can understand how that feels and I am sending you my empathy. I have had to accept that a lot of the things I used to do - especially all socializing after 6pm - don't work for me anymore as the input to my senses is just too much.

However, I have learned that I do have some friendships that transcend those activities and those friends are happy to meet me on my terms and during my comfort daytime hours, too. So we go hiking or walking together, we visit museums and new places in the afternoons etc. That can also involve having a beer together before we go home etc. The friends who aren't cool with that, probably weren't the greatest of friends in the first place, but you will find a select (and precious) few who are happy to accommodate your wishes in order to spend some quality time with you.

Yes, it's sad having to give up what we knew previously, but there is a lot of beauty, laughter and good conversations to be had in our new circumstances. It takes patience (yes, even more patience - aren't we becoming excellent at that?!) and an open mind, and you might discover completely new pastimes with the friends who really matter.

Also! Remember that a lot of what we see as "fulfilling lives" in social media etc. is only half the picture

[Annabella1976 in reply to Vickerli]

Me too I live with my mother and father and my mother got a mini stroke we have home help but I lost all my friends thank god my mother can still talk hope things get better for you

[Hidden]

Morning, I am kind of the same. I struggle with a lot of people in a crowd and it gets me so annoyed and frustrated at the way they are I sometimes feel like I'm going to lose my patience with them. There have been times in supermarkets my partner has turned away because of the face I have on at people or me throwing my hands up in the air. I totally understand how you are feeling. I just cope with every day telling myself its a better day outside in amongst the silly people than it was yesterday, and sometimes it helps me cope and feel a little better. You can do this, it is difficult yes, but you can do it, you are the stronger person than they ever will be. Don't give up! 😊

[Letsrock]

Hi Dann, yes ot is very frustrating. Hand on in there. Do you have help from nhs like psychiatric nurse to help with the mental functions? There is help out there but it takes a lot of pressure on gp to process you.

There should be groups as well fir support brain injury, enable groups fir activities and also headway support groups. A new life to create different friends.

Hope you get some help.

[Astley10]

Ur not alone mate

[Nemo24]

Sorry to hear this. Its tricky adjusting to the changes afterwards. Still juggle managing every day but it is important to have contact with friends. Am lucky that have couple of really close friends who have helped me the last couple of years. It's taken some explaining but worth it so much. Also have new friends from Headways local group. They just get it. Have a look into finding some support.

[Skulls]

Everything changes, Dann, and life becomes a challenge to adapt. My filter has gone so perhaps I speak out of turn. The trouble is those closest to me do not seem to recognise I am now permanently damaged and expect me to behave and speak as I had always done. What I recall saying is paraphrased and said back to me like a weapon. Believe me, you get to the point where you feel it is not worth trying to speak to people. Grab whatever joy you can when you can. Good luck, bro.

[Nafnaf87]

Good morning Dann

I wish I knew what to say other than we just have to keep going with some sort of sense of optimism.

Life will not stop throwing up challenges and they always come together after a period of calm - mine is now. The local authority want £70 off me for parking without displaying a Blue Badge. Local Headway partners who are big lawyer firm dropped me in it on an appeal where I got stitched up and CAB just told us (me and my local Headway group chairlady) they don't do face-to-face even though we are attending a meeting with them tomorrow!

The system is bananas and difficult for a normal person ....

Best wishes

Michael

[lcd8]

Hi Dann. So sorry you are feeling like this. Unfortunately some people just don't understand things that aren't happening directly to them. I'm afraid this can even include friends. Maybe folks on the whole are frightened of BI and therefore its easier just to not think about it. But for some of us there is obviously no choice. Please don't give up though even if you find it totally humiliating and depressing. I've been here long enough to have heard about friends drifting away quite a few times. Try to concentrate on those that stick by you and develop your relationships with them. And maybe look into new hobbies/interests or voluntary work where you'll meet new people. Lastly I could say that noone has a perfect and totally fulfilling life - some are just good at creating that impression. Good luck.

[Trevor78]

I've had a lifetime of it. Managed to reach early retirement and should be having a great time away from the daily grind but I'm not and just treading water alone!

[skydivesurvivor]

sounds like many of us here! We r all struggling to adapt/ accept our situation. Find this a great site for support in trying times!! Chin up & SMILE?!!

[Dann2]

Thank you for all your responses and support. My frontal lobe feels so bad tonight, it’s really like the worst thing ever to try and cope with, this dead/numb feeling. So impossible to accept and live with. An ongoing nightmare.

Anyway thanks again and wish you all the best with what you are coping with too.

[Tombsey]

don’t give up that is what I say to my mom. Long recovery but stay strong

[catrabb1t]

Yes that is how it is. yet I do not get the feeling of wanting to scream. I seem to be on the outside and that is all I can cope with and it hasn't affected the "wanting" part of me. So in that way I have an easier time of it than you. It sounds very hard on you wanting more and being frustrated by it. I do feel sad when it is family social gatherings that I do not attend, but still not enough for it to badly affect me.. Maybe that will come as I am 18 months post-surgery...

Where I live there are a few things that could help you.

Have you heard of Social-prescribing? it is a NHS service. Posters are sometimes seen in GP surgeries. I think if you google it you will find a page about it local to you.

First, I was phoned by the service and answered some questions and could comment on anything that would help me (it covers a lot of subjects, including Housing for example, plus the social connections). They told me where they would send my referral to and gave me the name of the person I would meet there. I met with a lovely lady in a GP surgery (she is non-medical) and we chatted about my social difficulties. Her job was to find me activities / services / support that linked to our discussion. It is possible for them to accompany you to an activiry for the first time if you find that is helpful. I went away and realised I should have said something more obvious and I updated the next time I saw her. In all I had 4 meetings I think. There was no expectation that I did or attended anything that was talked about. In fact, I didn't but the experience really helped me think things through for a time when I wanted to do those things. You can mention anything that you would enjoy, e.g. walking, or craft...

There are charities that help with befriending. The one I was linked with had a volunteer who you could meet up with on an agreed basis e.g. fortnightly, and I had opted for going for a walk. I got this contact from the Neuro Rehab team (the service was non-related to neuro). The social prescriber (above) might also have Befriending contacts.

These might be useful to you or others.

Take care

[LondonGee]

when my GP first said to me “you will return to normal, just a different type of normal “ I was so angry I changed surgery. I wanted to return to being me - dancing, socialising, working, being able to think clearly, driving

7 years down the line I realise he was correct. I have normality in my life. I still can’t handle overload of senses. I recently tried the cinema again and it was too much. I covered my eyes with a scarf, regretted not taking earplugs and slept. But, I went for the sake of my partner.

I drive daytime and in semi darkness and poor weather (oncoming headlights had made it impossible for me until recently) and I no longer have to cover my eyes as a passenger at night as the lights have become bearable. A new normal - not one I would choose but I have accepted and each winter (early nights) I realise it’s getting better and I haven’t stopped hoping that I’ll get back to night driving at least on small local roads

Wherever I go I consider where to sit or stand to avoid noise behind me or flashing lights. But it’s taken me time to be assertive and I will say where I want to sit (back against a wall at the end of the table if possible) and I will ask someone to move if necessary. Everyone now sees me as fully recovered because I work around things or avoid. My hobby was dancing. I now garden (new for me) helping at a local charity, it gets me outside and I can be as social as I wish.

Things are so much better now and I hope that in time they will be for you.

[Mrschippy]

So sorry to hear how much you are struggling. Just try to stay strong and take one day at a time. Be positive about the small things you can achieve. Don’t be afraid to get more support if necessary.

[dark-angel-79]

Hey Dann2,

Same buddy, Same here.. respectfully, its probably harder as a guy to socialise even pre bi or have that support network in place. im im the same boat after mine. family disappeared - shrugged me off as fast as they could.. some even left the area - stranded... 'freinds' fu**** off faster than linford christie on speed.. left on my own and no support - still to this day 23 years on.. sometimes ive made a freind - or so i think, but in reality its only good till the novelty for them wears off. or they cannot 'tolerate' me any more. in part, i am this way, because of BI, I am this way in other part, because that is how others made me.

I would advise even if just for a getting out and socialising aspect of things, learn something or do something you have wanted to do. just to be around people - let them accept you for you are now. if they cant, that is their problem, not yours, and if thats the case, did you really need that kind of person in your life anyaway?

But never give up. quitters quit. your not a quitter. make life your all-you-can eat buffet and get a big fork!

[Dann2 in reply to dark-angel-79]

sometimes i feel like giving up dark angel! just can’t make proper connections, even with myself really.. very scared about the future. can’t really believe it’s happening to be honest. i have been going to an evening class for a while, but my symptoms make it really difficult to maintain conversations with others and it always ends awkwardly. i can’t think clearly, feel very dumb and slow minded. absolutely hate it. makes me desperately sad inside.

i’m sorry that happened to you. Sounds awful being abandoned like that. i hope you have managed to find a genuine friend or two.

take it easy mate