I need a

[PeteMoney]

I could really do with a friend. I got my brain injury in March 2018. I have problems now with my memory. I can't confide in anyone about them. Nobody understands how limited my brain makes me feel. I want to chat to someone else with a brain injury and find out about some of the great things they have done/achieved since getting their injury. I want hope. At the moment, I feel very inhibited and have noone that really understands that in my life. I want to be able to talk to someone who really knows how I feel. I have attempted and failed at things due to my injury. It's damaging my mental health. I want to talk to someone about it.

[cat3]

Hi m'love & welcome. I just spotted your post before switching off my laptop (at 2am) so I'll be back tomorrow for a chat. I empathise immediately with you comments (as will many others here) so hopefully, with some replies, you'll feel less alone.😏

See you tomorrow... Cat x

[cat3 in reply to cat3]

Hi again m'love. You have some great replies from folk who truly identify with your issues. Brain injury was a complete shock to my family who've been loving and supportive ever since. But there's no way they can fully grasp the countless frustrations and feelings of loss. And I've drifted away from friends.

We brain injury survivors work hard to accept the changes and to adapt to a different lifestyles, but it can be a lonely place living amongst folk who have all the abilities we used to have but now struggle with, big time, such as recalling the right words for a conversation, walking for pleasure and remembering stuff from only yesterday. I see from your bio that you're quite young which can add to the frustration.

It has some questionable benefits for me, such as having a whole raft of stuff to watch on tv each night as most of what I've watched is forgotten. But losing keys, phone, shopping list (too many times spent standing in supermarket like a duck in a thunderstorm wondering what I need) is a daily nightmare. As is forgetting appointments/birthdays etc despite having them scrawled on a noticeboard.

But I was fortunate enough to be referred back to the neuro consultant 12 months after discharge from hospital. He was wonderful and referred me on for endocrine testing and to see the neuropsychologist who gave me useful advice and tools.

But it was only after joining this forum that I found my 'safe place' and was free to be 'Me' and to share confidences with folk which I wouldn't share with my own family. I have some amazing friends here now, some of whom I meet occasionally and who have been important to me for over a decade.

Well done if you've got through this. But please keep posting 'til you feel confident enough to share more thoughts and feelings.

Also ask your GP for a neuropsychology referral. And finally the Headway helpline can offer support and advice on 0808 800 2244 (freephone - office hours) or you can email them at [e-mail]

Hope to see you again soon m'love.... Cat x

[Crazychickangel]

Hi there, There will be many in this group that can relate to what you are going through and feeling. I def can.

I fell ill jan 20 with a rare brain infection and my life was turned upside down.

I used to have a photo graphic memory, freakishly so. Now if I watch a film it's like I'm watching it for the 1st time everytime.

My friends now call me normal but that doesn't give me much comfort.

I used to be very independent now I have eplisey so can't drive anymore and I dobt recognise my surroundings so I can't go out alone as would get lost.

My husband has to sort our kids out for school clubs etc as I can't take them.

However, the infection didn't touch the left side of my brain...my business head. So I have been able to return to work albeit not to the same job. I work from home and they have been amazing and think I'm incredible. I might not feel or think like the old me but they only know the new me. That doesn't stop me missing the old me every single day.

I'm not going to lie I cry alot!

Other than when I was in hospital which I have no memory of my parents have not been any help or support at all. I would go so far as to say alienated me. They have not taken anytime to understand what happened to me or how poorly I will always be now with only half a brain properly working. They think because I can walk talk etc I am fine. They don't know the half of it.

Do you have any family or close friends to confide in? Take care EJ

[Pairofboots]

Hi Pete, welcome, you will find many people here that have been where you are, and maybe further along in recovery. It would be worth contacting Headway to see where your local centre is based. Attending Headway was probably the best thing I did, all be it reluctantly at first. Just being able to spend time with others, who didn't judge, who had various problems felt more normal than the abstract world I had been dropped in to. Contact details for Headway are pinned to this page. Another thing that helped was talking with a neuro-psychologist, you can be referred by your GP or via the rehab team. Take care 🍀

[Painting-girl]

Hi PeteMoney, so sorry to hear this, would you like to share what happened to you? Though every injury is different, we tend to share a lot of the same effects, so ask anything you want here My MTBI was a few months after yours.

[PeteMoney in reply to Painting-girl]

Hi, I have no recollection of the day it happened. I tried to hang myself and I have no idea why. I can't remember the whole of 2018. I feel very guilty about it because I have a daughter who was only born in 2017. I think I must have felt like I was a burden for her and she would have felt better off without me. But I can't honestly remember. I feel sad because I think there are huge gaps in my memory from when she was a baby and I'll never get that time back. She's 5 1/2 now and we now have a great relationship. I love her so much and I know I am a great parent. But there are other things that are tough as I'm only 27. My brain injury happened when I was 22. I was a healthcare student this year because I felt so grateful for all the doctors that have looked after me since my injury so I wanted to go into healthcare but because my memory problems made it too difficult I had to leave my course. I just feel a bit lost because noone on my course seemed to understand and I felt like I was bullied into leaving by one of my tutors for not hacking it. I'm finding it hard to navigate between being open about my brain injury and keeping it a secret. If I'm honest, nicer people may be more understanding and supportive but others may push me away and encourage me to give up.

[Painting-girl in reply to PeteMoney]

Hi P, same here, in that 2018 (after my injury) was a blur.

That's so sad that you felt awful enough to want to hang yourself, and that no-one reached you with help sooner. It was very soon after your daughter was born, do you think it was probably post natal depression? The feeling that your children would be better off without you is surprisingly common sadly. I'm so glad you realise what a great parent you are now . Well done. Try not to feel guilty, you've turned round a difficult situation and got through - try and be proud.

I'm so sorry about your course. Would you be able to restart it in the light of your memory problems, if you wrote to them and asked if you could have allowances made to let you have extra time and so on? There is a surprising amount of support out there when studying. Sometimes I think that even pre-brain injury, I didn't always look at different ways to continue things or ask for enough help when I got stuck - some of which, with hindsight, I now regret.

I know what you mean about talking about a brain injury. I think I would if it meant doing a training course, to ensure I got support - but with people I meet day to day, I'll now have a conversation with people when as a rule I don't mention it. I've got better at saying 'no' socially, so that I don't overdo things ( unless I want to).

You speak to my current conundrum - I'm applying for a part time job, and don't know whether to declare my bi or not - I think I won't ...

But first a sleep!

[PeteMoney in reply to Painting-girl]

I think I partly had postnatal depression, yes. I think specially as I was very young and in my hometown most others with new babies were at least 16 years older than me, typically. I also had very little support from my daughter's biological dad, a very nasty person who has since said to me that he regretted saving my life from my attempted suicide. Last heard from him on Christmas Day 2019 when he said that to me. Although it was horrible and something I still think about often, I am almost glad he did because he now has nothing to do with my daughter or me which is the best thing for her upbringing. I think the reason why I tried to hang myself was very likely because of him but I can never know for sure. Not too bothered why I did, I'm more bothered about whether or not my memory will ever be the same again.

[PeteMoney in reply to PeteMoney]

Oh and I'd just love to find friends and people that can understand me. I have people I love in my life like my current partner but part of me thinks he will never really understand how I feel, which is hard. I think he often feels like I should just get over it and accept my brain injury, you know?

[cat3 in reply to PeteMoney]

It's tough knowing loved ones can't fully appreciate the daily issues we face. But I've (mostly) learned to accept that it's nigh on impossible for others to feel what we feel.

I think of my friend, next door, who's lost both her husband and son within 6 months of one another and how my constant support, concern or words can't compensate for their loss, or her feelings of trauma and loneliness.

So if your partner is loving & caring it's his way of being 'there' for you. None of us can truly empathize with another without seeing inside their brain and feeling their pain.

As Jen suggests, do contact the healthcare course providers about about a fresh attempt, requesting allowances for your brain injury. Alternatively, voluntary work in the care sector is very rewarding and can test your coping levels for future endeavours.

Good work in freeing yourself and your daughter from your ex. Now, take your time in finding your own way forward with any help offered along the way. And we're always here m'love... Xx

[Painting-girl in reply to PeteMoney]

Hello P, those are all very traumatic things to have to live through. I'm glad you have a new relationship now.

I think acceptance of a brain injury is something that comes to us pretty slowly, I was helped a lot by the rehab team I had, in that they just were matter of fact about my symptoms being caused by a brain injury. But I think I probably got more validation and closure by reading what people had written on here - it normalised it for me somehow. I still occasionally get shocked when I realise that my capacity for activity is less than my peer group - because of the fatigue, but usually I enjoy the quality of my new post brain injury life. Funnily enough, by gradually doing more activities I've built up a greater personal capacity for effort overall, and have had some measurable cognitive improvements, even this year, and my memory has improved. Where memory is concerned make sure you make the most of your phone, and a trusty notepad and calendar to save you trying to keep everything in your head - it really helps.

[BeeYou22]

Hello and welcome! I had my BI the same year as you did and I totally understand how you are feeling. Everyone has a different experience on a health level but the reaction from others who haven't experienced this is somewhat predictable, sadly. BI is a hidden injury and I also get frustrated and sad when other people tell me I'm ok.

We are all here for you when you feel like sharing and we are a great bunch of people who will always validate, hear you and never judge.

If you are in the UK I suggest calling Headway and Mindline for a chat. I have found both invaluable and contrary to popular belief Mindline is not just a crisis line. They are there for a 30 minute call, every day. 24/7 to be there to listen and talk to.

You are not alone so feel free to share with us x

[Writeronstack]

Hi PeteMoney - I am exactly in the same place as you - my brain injury was this year, and I am in the process of getting myself to a neurologist - just getting the medical people to engage is isolating enough. You have a whole host of others in the same boat here. I can't learn anything new - my 'can do' attitude at work has simply vanished. People don't recognise me any more, it seems - I am not the same person, in many distinct ways - and the lack of memory is one big bit of it. Also, more cautious, and more 'selfish' - looking for periods of rest in the normal waking day. From my point of view, just trying to keep afloat - from everyone else's, a really self seeking person who is lately into self-indulgence..... the tiniest bit of tiredness, and she has to lie down now. The site of the injury has healed well - on the surface, the head looks fine now.

I asked a whole load of questions when I needed a friend, and found some really useful advice here. Doing what I was told, and keeping upright, and mostly doing. It will get better, I am beginning to think, on my better days. Do what Painting-girl above says - just talk about it all - and we will be able to identify with lots of your current experience.

Also, have you tried the support helpline?

[Teazymaid]

Hi .. I’m sure this Is a great place to find friends who have had Head injuries … I haven’t written much but have read loads and certainly don’t feel alone in my new world … I have changed so much in the last 20 months .. hard work ,and determination to make the best I could … no one really has a clue what it feels like which would drive me crazy ..

but I am about ti start volunteering with the stroke befriending service .. my speech therapist asked me if I would consider it and my speech is so much better and when I was working I was a mental health support worker … I can’t go back to work as my speech is not good enough for that sort of work and I can’t always fine the right words .. alone with a really bad short term memory .. I’m guessing someone who has had a stroke and is struggling to communicate will find some hope it it getting better …

Keep writing things down and take photos of where you parked your car so you can find it later ( that’s what I did 😁)

Personal I just told others and although they don’t understand it did help them to understand why I would forget things that I was supposed to be doing …

I hope you will find help with some amazing people on here as it was the only place that I found help in realising I was not alone .. sue x

[lcd8]

Hi there. So sorry to hear you are feeling a bit down. Unfortunately the world of BI can be a lonely place. But I'm sure that most members here will be able to identify with you. My own BI has been present since birth but I only found out about it as a teenager. If you think I can help at all I'm more than happy for you to message me back.

Lulu

[timd59]

Like you I too had a brain injury back in 2020. I will gladly be your friend if you think it will help, but cannot guarantee that any reply will be quick (I am a lot slower than I was). My recovery has also been very slow so you may be of some help to me!

[DebFl]

Hi: I very much understand how deepressing and frustrating a braini njury is. Ten years ago I was assaulted resulting in massive brain bleed and 2 brain surgeries. I was an active professional . I lost my business and social life. It took quite a long time for me to begin to understand a brain injury and look it in the "eye". I began to read and learn. I found good therapists to help me along the way. It can be a very lonely road, but you have to celebrate each small victory you have. I found that working out each morning helped me heal. I still go to bed early each night, eat very health, avoid ALL alcohol. and drink pleny of water. If you have people in your life, you are lucky, be a good friend to them. Remember they have problems too. They will come to understand the new you. I have found that I am softer and quieter. When I see my true friends we still laugh alot. You will laugh, things will get easier, your day will fill with new things that make you happy. I just found this group last night. I hope I helped Be well.