I just want to say I've really enjoyed reading your posts over the past week since I've joined. It seems like a warm community that I can relate to since I've had a BI myself and find it very frustrating sometimes with managing my fatigue and the left side of my body. My bi happened about 25 years ago but it still affects my to this day, and although I'm largely over the resentment of missing out on having a normal life, it's hard when I want to fit in with the rest of the crowd because there are few people like me where I live.
Anyway, I'm sure we'll chat more, James.
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James1984
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Dear James Welcome to the group. My BI was nearly 27 years ago. Still have fatigue. Still have resentment but much less now. It used to consume me. I lived in NZ for 7.5 yrs and only ever spent one hour in Aussie for an airport transfer. I live in UK now.
If you want to chat about anything feel free to message me.
Welcome James. It's 10 + years for me now (brain haemorrhage) and has been lifechanging. 'Normal' feels like a dream I once had ......but life isn't so bad. 😏
Hope to see you around and hear more about you and your BI journey... Cat x
Hi Cat, thanks for the reply. Yeah life isn't so bad now that I've learnt various coping skills and accepted who I am. It just gets frustrating at the moment because the position I'm in makes it difficult to provide for myself. I really struggle with the expectations to fit in as a 'normal' person in workplaces.
I give my employer a heads up these days because I find with fatigue my symptoms show quite a lot. A former boss of mine I told about my BI and he replied he fell off his skateboard once and was in hospital for 3 months, but he appeared to manage 100% compared to me throughout the day. I just don't think normal people really understand.
I pushed my limits for years in various labouring jobs doing overtime....really beyond my limits, so now I'm looking for something I CAN do....but the choices are few and far between.
I'm looking at getting some government help but that is another hurdle that will require lots of evidence I'll need to acquire. Good help where I am seems hard to come by so I'll have to be careful who I speak to because visiting a specialist is very expensive.
Anyway, I'm visiting the doctor to again today to see if he has any advice on how to pursue this. The 'right' job might pop up, but I want to a Plan B just in case I eventually need government assistance.
Sorry that work issues are such a nightmare James. I hope you find a knowledgeable and empathetic advocate to put your case across powerfully enough to merit government assistance.
It's enough of a struggle getting support here in the UK but I'd no idea it was equally (if not more) challenging down under !
I hope today's visit with the doctor has proved promising....
My doctor is kind of empathetic but he doesn't have much idea when it comes to this kind of thing, so I realised I'll have to some of the leg-work myself. I told him if anyone I want to see someone with a medical background preferably in BI, 'Neuro-Psychologists' seem to specialise in assessing cognitive ability through standardised testing under a calm environment, but not under load which is where I really suffer fatigue and my symptoms are really pronounced. And someone with a medical background is probably going to have a better idea of my injury and impact, so it saves time and $$$ explaining.
So I'm either going to see a Neurologist or Neuro-Psychiatrist with a referral from him and hopefully get some direction and opinion on how they perceive the severity of impact of my injury, and go from there. There's no guarantee, but I'm at least giving this a try because it's very difficult to know what else to do work-wise.
A disability advocate would be helpful but I can't seem to find any where I am. They only seem to be available for legal advocacy when appealing decisions of the tribunal or court.
Good luck with your referral James. A neuropsychiatrist should unearth your issues - documenting them in a detailed report and emphasizing the proven, frequently permanent after-effects of brain injury and their impact on daily life.
Hi James. I'm Juliet. I had my bi 4 years ago. My mental recovery is going well according to my psychiatrist. My walking needs more practice. How about you? How is your mental recovery and physical recovery going?
Hi Juliet, I've recovered well overall compared to when I first came out of hospital 25 years ago. I still have some effect on my entire left side, but it's improved a lot with practice. Even years after my accident I still made gradual improvements due the fact I was forced to use my left side, for example when using the clutch pedal on a car. Riding a bicycle everyday helped as well.
My mental recovery was quite frustrating at the time as I was a teenager back then and trying to fit back in with all my friends, but I was severely limited by my physical ability, fatigue, and my cognitive inability made me feel embarrassed and upset.
These days I function quite well....within my limits. In my early career I frequently pushed myself too far and ended up quite tired and angry. At the moment I'm limiting myself from part-time up to 38 hours per week with no overtime so that I maintain my professionalism and keep my job for the long-term.
It was nice to hear from you Juliet. I'm glad to hear your recovery is going well. Keep getting plenty of practice with walking and strength-building exercises. I found my walking was noticeably better the more practice I got in early on.
I look forward to reading your novel when it comes out,
I am unfortunately been in an accident on my motorbike that I can't remember anything about it or me? But I am still alive but I have looked through many times of what happened to me. I am very lucky to still be alive, but my memory is so useless, cos I dont remember anything even my mum passing away forever! I just hope she knows how much I miss her? I am left in a very bad situation where the only thing I've got left is my hope and not forgetting my wife. Who has put up with lots of things that unfortunately I can't remember. But I will keep my diary as a way of finding out that I am doing the right things to get me back to having a perfect memory of my life! I can't even remember doing this before? I just hope I have been using this like a diary to keep me informed. Unfortunately I dont remember anything at all even getting married? I just hope I am doing everything properly, so that one day I will be able to be me again???
Hi Alan, I'm sorry to hear what you've lost from your accident. I hope there are medical professionals able to assist further in your recovery. A diary sounds like a great idea to manage your daily events and significant life events.
I think we all learn coping skills over the years as a way to manage with what we are given, so that can be seen as some hope that there are still things in life to learn.
I'm not the same person I was before the accident. I don't have the same friends, nor the same lifestyle. But regardless, I'm proud of who I am and how far I've come.
Your doing the best you can Alan, your family would certainly understand that.
Hi James,
Welcome to the forum! I could be called a ‘normal’ person in that I don’t have a brain injury, but my daughter does and I’ve been with her every step of the way so I know how life changing it is and how the fatigue etc needs to be managed. I agree with you that normal people don’t understand, they seem to think that once you are out of hospital and ‘recovered’ your life can go back to the way it was and that you are the same person, which we all know is not the reality.
Thanks TBIX, yeah most people don't understand the effects especially fatigue has on us. It exponentially affects my mood and physical ability, and frequently I get assumed to have a bad attitude or depression.....before people have even spoken to me. Your spot on that it does need to be managed, so I really need to balance my life so that I'm not being over-worked.
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