Newbeee

[Jaxs050783]

Hi everyone.

I’m a 34 year old male and live in Bristol.

I suffered a TBI as a result of an attack back in 2005. I had an acute subdural haematoma which unfortunately grew so big a had a stroke to my right sided optical lobe.

It has left me partially sighted therefore I lost my job, degree and driving license.

I still get fatigued easily suffer from anxiety which is under control at the mo.

It’s good to hear of others in a similar situation which may sound harsh but it’s comforting.

[email address removed by admin]

[Fificakes2]

Oh no that is so unlucky and an awful lot to lose! I had just graduated when i had my accident, so at least i got my degree. I've given up my car and driving too, but I don't miss it because I normally have someone with me when I go out.

I think fatigue and anxiety are very common after ABI, but doesn't make them any easier to deal with it.

Do you have any hobbies you do or anything?

[Jaxs050783 in reply to Fificakes2]

Love walking my dogs and weight train most days how about u?

[Fificakes2 in reply to Jaxs050783]

I've got a cat ☺ no I love dogs, but I can't walk well because of my accident. are you doing weights to get strength up?

I go physio and some weeks wheelchair basketball. My degree was English Lit so I still love reading. What was yours in?

[Jaxs050783 in reply to Fificakes2]

Sorry dude I was studying a chemistry BSc at Leeds uni. Still enjoy chemistry to this day like u love reading.

Wheel chair basketball sounds cool u any good?

[Fificakes2 in reply to Jaxs050783]

I'm pleased it still give you pleasure. No we'renot great division 4 and often struggle for players, but I really enjoy team games and I've got the ball skills and just not the strength. I need to do weights like you 😉

[Jaxs050783 in reply to Fificakes2]

Glad you enjoy it too! Good for the soul.

I know what u mean about the pleasure thing. I don’t get much zing from too much but weights is one activity which I do.

Most other things seem to be too much like hard work mentally and not at all rewarding.

It’s good to like team sports and being part of something keep it up

[Jaxs050783 in reply to Jaxs050783]

I train for strength and have done since I was 18.

Brain injuries are complicated I’m still learning the effects to this day and mine was in ‘05. If u take yourself out of your routine/ normal situation u will find new challenges and find what you may or may not struggle with. The more u do the better, it can be depressing but we have the injury and must live with it. You can get faster and better at things, your brain is mouldable and can get better to a certain degree

[Fificakes2 in reply to Jaxs050783]

Yes I know and that is stressful because you always think I should be trying harder and then I will get better. Yet there is a limit to it and only so far your brain can heal because of the damage.

[cat3]

Welcome Tony. Not harsh at all to need reassurance when you have a brain injury. There's so little understanding 'on the outside' and this is about the only place where we 'get' one another.

But after so many years experience you might find you're the one doing the reassuring. 😖

Sorry to hear you've lost so much ; it's a story we hear all too often sadly. And the fatigue too ; I still get meltdown after 6 years from not sticking to the medical rule-book !

Cat x

[Jaxs050783 in reply to cat3]

Think the “meltdowns” will continue like mine. It’s just how u deal with them changes.

I also suffer from poor balance like you but mine is intermittent. Know one around me would know but it feels like I’m walking on a boat. That I feel is the biggest part is that everyone thinks he looks good so must be good. Little do they know I have a million things going on in my brain. Lol

[cat3 in reply to Jaxs050783]

Yes, 'On a boat'............definitely, and on pretty rough seas at times ! And we do inhabit a separate little world don't we, which most others have no conception of.............. x

[Jaxs050783 in reply to cat3]

It’s very weird walking one minute and everything is ok, then at a drop of a hat something says enough of walking normal have some of this! Lol. As far as explaining to others about effects I’ve given up. The only people that will truly know is effected people.

I do think sometimes it would be easier having a wife whom had a TBI lol

[lloydyuk]

Hi Jax

I help run The Brain Injury Cafe in Bristol. There’s a FB & Instagram page.

We meet every other weds at 1pm for 1.5 hours centrally. It’s a social group where a few of us with BI meet up, have a hot drink & chat essentially.

Started in Feb and it’s identified a real need.

No clinical questions, tests just a place to be yourself where you can tell as much or as little as you want to.

PM me or I can message you if you want more details? Look us up on social media.

All the best. Danny.

[Jaxs050783 in reply to lloydyuk]

Hi Dan

Sounds great

[bonfire in reply to lloydyuk]

Hi, I would like to know more more about this Brain injury Cafe in Bristol. It sounds really good.

I was wondering how did you get the idea? Is it linked to Headway Bristol or independent? Is it a day centre set-up or something different? What does it offer?

Thanks

I look forward to hearing more.

Bonfire

[lloydyuk in reply to bonfire]

Hi

The Brain Injury Cafe is not linked to Headway and we are completely independent.

It is a social environment where people with a brain injury can meet others in a similar situation who genuinely understand.

At present we meet alternate Wednesdays for an hour and a half.

Essentially I with a few others set it up as a need was identified for those who did not suit or get on at Headway.

We have a FB/Instagram page at present & hope to set up a website in the future.

There’s a £2 suggested donation each meeting which we save to use later.

Last year we did a spinning (stationary cycling) fund raiser & had a Christmas lunch for those who wanted to attend.

Regards

Danny

[bonfire in reply to lloydyuk]

Where do you meet and at what time please?

[Jaxs050783 in reply to bonfire]

Hi Bonfire,

Sorry I’m yet to meet anyone from any BI group. I live in Chew Stoke which is 15mins from Bristol.

I been contemplating meeting up with other Survivors as my mates and wife do not understand what I go through. My wife is a nightmare and she dismisses what I say, which I can understand seeing as though I had my injury in ‘05. In actual fact I don’t speak to my mates about it but that’s the way I am.

[bexx87 in reply to bonfire]

Hi Bonfire I live in bristol (and work for the council) I go to the cafe when I can but because I have to in my lunch break it is very hard because if I have a lot of work on I cant take 2 hours but I do go to a social group that Headway bristol run called HIYA its for 18-35 year olds and we meet up once a month as well as go to BIC when I can and had a article published by headway last year( headway.org.uk/about-brain-... and I show HR and they want to do a piece on our internal web page and share it around and there is a guy call Bruce who works for the council and lives in Yate (user name

brumatmed) and there is Dannys girlfriend Emma ( user name broken_doll)

[Jaxs050783 in reply to bonfire]

Bonfire do u live in Bristol?

[dinkylimpet]

I've been reading the posts and i can get where you coming from.I too have optical nerve damage (mines on the right hand side).I too have poor balance/co ordination.....resulting in being a permanent wheelchair user. I only have the use of my left eye as my right eye lid is down so I can only see in 2d and have no concept of distance .Door frames , gateways and curbs are a nightmare for example. Luckily my husband does the driving or I'd be really stuck.........

[Jaxs050783 in reply to dinkylimpet]

Hi

Dinkylimpet,

I had third nerve palsy where my eye lid drooped and my right eye was diverting but it resolved tself and returned to normal after doc said it wouldn’t.

I think they can do corrective surgery on droopy eyelids!

Speak to your GP and ask to be referred to a neuro opthamologist.

Tony

[Jaxs050783]

Bless u, your not alone!