Not Been Here for a While

[ladybird777]

The frustrations of my tbi have surfaced even more recently. My memory is worse and my ability to regulate my mood is getting more difficult. Am quite depressed but pretend to be happy cos noone likes a misery. I had a voluntary job last year I ended up leaving due to overload and burn out. I worked too many hours and had too much stress. I recently saw the managers of the place I'd worked and they said they were glad to see the back of me cos I had a negative persona towards the end. They basically said my problems were not up for discussion at work. I never did discuss problems in work but the work was in a church so I kind of thought they might be a BIT supportive but they weren't. I thought I did well up to leaving. My mum had just died and lots was going on in my life and I tried my best. I was always nice and cheerful to customers but I just feel like nothing I do is good enough.

I sit in church on my own every week and wonder why I bother cos I can't remember a single thing that is said. Pre tbi my faith was important to me but now I can't remember it. I just feel lonely sitting there by myself.

I got put back in the support group of ESA after 6 months of carry on with the dwp but then I got a letter inviting me to see a work coach anyway. They clearly have no idea, even now, how limited I am. Am 56 and have been like this for 30 years. Am not going to get better now...not after all this time. Am alone with my cats. Not one single person understands how I am ...not one. One person even suggested I do a degree. LOL

[Hidden]

Your frustrations sound similar to mine. After a 'good recovery' (ha) and everyone totally forgetting about my tbi sustained after a car hit me in 1996 (I was 17), 20 years on and I am probably struggling more with my problems and much more concerned about them. I've recently been given a break by an upholsterer which I got in contact with through my Employment Support Officer. Job Centre was giving me a hard time about getting back into work which made me go to Headway so this started with their help. Hang in there, things do and will improve

[Hidden]

Oh Ladybird, I do feel for you. If you were volunteering at the church, how dare they be so nasty to you, where is their Christian spirit. I would suggest firstly that you try several different churches - you must be able to find one with a much more friendly approach than that one.

Reading back over your previous posts, you have a very large family and you don't get on with some of them. How about the others? Is there none of them that can help you. You have said previously that you find it hard to articulate how you are feeling and coping. Can one of your family not come to the gp with you? It sounds as though you could do with some help with depression, if you feel a bit better in yourself and about yourself, you may find that other things become easier for you.

Do keep posting on here, there are lots of us here to listen and to help if we can. There is no need to be alone.

[Hidden in reply to Hidden]

Charity shops always need voluntary staff and I believe they are more understanding. And there are so many! A wide range of stuff to do there, I started in the Pilgrims tidying the shop floor and after 7 months had totally learned the till system so my confidence was back. They will be kind enough to let you do what you can, even sitting out the back sorting through the donations is something they will be grateful for. SO many charity shops now, and you will be helping the planet with the recycling process

[ladybird777]

Thanks for your kind replies. My kids who do speak to me are at uni. Even when home they live 2 hours drive from me. They see me as capable and the daughter I see the most cares for my eldest adult son who has AS. She has enough on with him and her uni work. I have twin sons live with me who are 18. One is severely autistic and needs a lot of care. The other is my Godsend. He is lovely and helps but I feel like he needs his own life so I don't put my problems onto him but he is my only ray of sunshine. He's often the only human contact I have from one week to the next. I had a carer, who was also my boyfriend, but he left now and moved to Europe to work in a church before Brexit as he needs to be established . He's not coming back but I've no one else to ask to be my carer here and tbh he wasn't much of one either. We were together nearly 2 years and it's been a wrench going back to being alone again. I knew it was coming tho cos it always does. People get fed up of me or they use my brain damage to their own ends. He did both. I went to Europe and met the church he is working in and they worked out what a prat he'd been to me which I found surprising but they are nice people.

I think I need to see my GP. Getting an appointment is like getting an audience with the Pope. I have to ring at 8 am on the day I want an appointment. They do not give appointments in advance at any of the surgeries here. I have RA and my hands don't work to use the phone at that time of the day lol. I've told them this but they don't care. My son can't phone for me as he is partially deaf.

The churches attitude is not a surprise to me at all. I think many nowadays have an agenda and run the church as a business venture. Volunteeers are cheap/free labour. The one I work in is a registered charity. It has a finger in many pies in the community. Their main priority is about making money. Sad but true. I am good at my job there and it's been frustrating to them I do not have the same vision. I give away coffee to people who have nothing and I do not care about making money. I never will. It's supposed to be a church. If people cannot ask for help from a church in times of need we might as well pack up and go home. I have decided if I leave I will never go to church again. I don't find organised religion easy anyway.

It's a Bank holiday and my son is out. My austistic son is in his room. I am, as usual, alone except for my cats. I just need to figure out a way forward.

[ladybird777]

I got proactive cos the church had said I could go back to my voluntary job but it was clear to me it was only cos people who are normally working are on holiday. I was told they don't want me in the public eye cos of "what message it gives" even tho I am good at the job. That hurt a lot. They kept saying I was forgiven but am not sure what for....grieving for my mum, my grandson, my ex being so drunk he forgot his sons 18ths, my dad bawling me out at my mums deathbed and funeral? Forgiven for being human then. I basically emailed and said I knew i was only tolerated cos they had noone else and was not prepared to work on that basis not after giving them 50 hours plus a week for over a year for free. I said I felt they had been very unfair to me and cos I did not want to be unfair back I'd work next week if I hear they want me too but that was all. I am done.

[Hidden in reply to ladybird777]

It sounds like you have made a good decision and the best one in your circumstance! Don't forget being a good person is always the best thing- you sound like me, I'd be giving away free tea to people that deserve a freebie! Also the bit about partners either leaving because of the head injury or taking advantage because of it rings true with me!

[Astley10]

People dont understand a traumatic brain injury is a hidden injury.we may look ok but our brains are damaged not every day is the same.we could be good 1 day and down the next plus the catalouge of symptoms is never ending smell ,taste,dizziness,memory,concentration a could go on .............

People dont c these things and they are hard to live with

[deborah27]

hi, I recognize myself in so much of what you say. we are of a similar age and I live alone with my cats. the world looks and feels so different now and a new reality is my experience. sadly, so many people just do not have a clue what to do with brain injury including the medical world. I cannot, however, forgive the lack of basic humanity I have encountered from time to time; especially from those who present themselves as kind and caring. loneliness is a 'killer', it's an enforced isolation and is nothing to do with choice. I enjoy my own company most of the time, I love my little house and my cats. The hand of friendship nowadays is all too often a 'virtual' hand and help-lines have at times replaced friends and family. I think that because my health is up and down and I can't necessarily predict when my 'good' day will be, I often don't accept invitations or make plans because I fear that I am letting someone down. the answer may be to change my attitude and perhaps care less about what might happen or what people might think... harder to do than words suggest I think. I feel less lonely having found you all at Headway, have learned so much and understand myself a little more. I have had a few giggles too I have to say!