New to the forum

Hello there. I've lived with an aquired head injury for over twenty years now with minimal medical support after my initial operation. i managed to work for several years but had to give up in the end. I've gradually become more and more isolated. I do have family about but i "look" ok. They seem to think I should be better by now. Struggling along day to day and pleased to find this site. I think my nearest Headway would be Sefton but I'm about 5 miles away. Looking forward to meeting people online for mutual support. Best wishes. TiredNan

9 Replies

  • Hi,

    Welcome to one of the friendliest places on the Internet, pleased to meet you. You'll find plenty of people here who understand how you're feeling, or who find themselves in similar situations. It seems frequent that I read of people who do really well, and have an outward appearance of being well, so family and friends adopt an 'ah great - you're all better now' approach - when nothing could be further from the truth. I know what that feels like. Remember to give yourself some credit for actually getting as far as going back to work. The thought of this terrifies me (rather the potential to wreak the same havoc I do at home, in a workplace). Well done for giving it a go. Hope you can go along to your nearest headway group and get some support from people who understand - and look forward to reading your future posts :)

  • Thank you for your very kind and understanding reply Elenor it means a lot to me. I really appreciate.

  • Hi

  • Hello Michael and thank you for the welcome. I'm just having a little peek about the forum. all best wishes to you.

  • Hello TiredNan, and welcome.

    This site is a fantastic resource, both for 'how to', and general emotional support. We're all at different stages, with different 'before' backgrounds, but we're fairly united in our desire to get on with this new life as best we can. Dip in and out, some of us have odd sleep patterns (I'm the one that's usually awake at 4am...), there will usually be someone 'about', whatever time you post.

    'Looking better', goodness, but that's a major source of frustration for most of us, we look 'normal', and we manage to get one leg in each leg of our trousers, eventually. The rest of the world doesn't 'get' that you're not 'better' as soon as you're out of the hospital, that the subtle differences are going to be life-long, and they keep bloody changing, so even though 'we' could do something yesterday, or last week, there's no guarantee we'd be able to do it again tomorrow. It's sad to say that a lot of us can empathise with the 'discharged with little/no guidance' element of your post. Technology, and techniques have developed massively over time, but a lot of us are still finding ourselves released back into the wild, with a leaflet, and a "We will write with your follow-up appointment."

    That's where this forum is so useful, that we're all living either in, or close to this strange brain-injured world. There are no stupid questions, I know a few of my early "Is this normal?" posts were a bit confused, but it's a hell of a thing to process, and there are a lot of GPs, and employers with VERY lumpy rugs, because they don't really know what to 'do' with a person with a brain injury. Small steps, my 'today' involves presenting myself at my GP surgery for an extension on my sick-note, and trying very hard not to scream if I get the doctor who refers to my grade 4 haemorrhage as 'your bleed.'

  • Welcome TiredNan. That could be my nickname too ... tired is my life! My husband's bi was nearly 30 years ago and, like you, we had almost no help. It is only now that things have deteriorated badly that the help is finally coming. Maybe you could get your family to contact Headway who could explain to them that, just because you look OK, you still have underlying problems. I am sure they don't mean to be unsympathetic, it is just difficult if it is someone else with a problem who doesn't appear to need help. Keep in touch, this site is the best thing I have found in all those years for help. Such lovely people and all so caring.

  • Hello there Gaia, that was such a helpful reply thank you, yes you seem to have summed it up so well. It is so good of you to lend such support to a stranger here. ( not a stranger now though!) what a relief to be able to read the words of people who "get it".

    Exhausted wife, , appreciate all that you say too. there's a tiredGrandad here too, who will identify with all the stress you have been through . The likes of our partners have carried the burden a long time and it really takes it out of you also i know.

    i got a bit lost on here last night so couldnt find my way back till today . must leave a trail of pebbles next time ha ha.

    Thank you everyone for your kindness, the relief I feel in finding you here is incredible.

    Warmest thanks to you all.

  • Hi TN! Your post jumped out at me because I too am a newbie here and my BI was in 1989... Like you I made a good recovery and went back to work full time - having two children as well in '95 and '98. But in '01 I started getting impossibly tired, suffering from painful dry eyes and gave up working full-time and driving long distances. It wasn't until I had had to give up even part time working from home and voluntarily surrendered my driving licence (I had been a member of the IAM and knew I was not safe to drive) and changed my GP practice in 2014 that I finally started to get results!

  • Hi to you Caroline, so sorry that you have had to go through this. We are all the walking wounded i guess. I really miss driving,, as i drove from when i was 17 till I had to surrender my licence. It's been a long slog for you to get a decent GP, never had much luck myself but just moved house so might find things better with this new one. Really looking forward to talking to you and the community here . Good wishes to all

    TN x

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