How anyone who’s suffered a TBI gets back to ‘normal’ life

[Redopal]

Hello. So I was a passenger in a car crash in 2019 and along with many other injuries, suffered a TBI. I’m still in recovery but I was just wondering if anyone who’s also been permanently affected by a TBI could maybe give me an idea of what it’s meant for them to get back to some form of work? I was cabin crew before and because of my injuries, won’t be able to go back to that job and because of my physical injuries, won’t be able to do anything physical but I probably also wouldn’t be able to do desk work etc so I’m at a bit of a loss and just looking for some guidance or something.

[Coffee20]

Good morning!!! In short, I didn’t get back to my old normal life. I slipped in the bathroom in 2017 and broke the toilet with my head.

I thought it would be a few months and I’d be ok. 4 years later and I still suffer from continuous head pain. They’ve categorised it as post concussion migraines. I’ve tried every offered treatment including Botox in the scalp. Nothing works other than tramadol and I’m loathed to use that very often s it has other side effects.

BUT, what was a level 6 or 7 pain two years ago is probably a 4 or 5 now, because the body has gotten used to living with a level of pain. You adapt.

I had to have 15 months off work. And the neurologist told me it would be years before I’d be back at work and even so I’d be unlikely to return to the level of work that I do. With some luck and a lot of stubborn determination I did return and back to my full duties. Fortunately I can alter the specific work I do to help - there are jobs that require slightly less concentration than others, so I can choose accordingly.

I can drive, but obviously wouldn’t do so if I was on a lot of pain or needed to take tramadol, for example. I also don’t drive long distances. 30 minutes is about the max.

One of the hardest things for me was accepting that I have disabilities and that they’re likely to be life long. High level therapy helped. I still get quite upset sometimes at having to deal with it all the time … knowing the toll it takes on my husband to see me in pain … but it could have been so much worse.

Another hard part is that I look my “normal” self (for want of a better word). And because of this people don’t see the pain. They don’t see the dark feelings. I paint a good “brave” face on and try to get on with things. Sometimes this is actually detrimental. And so my colleagues at work know about the accident and the other stuff that happened and know that some days I am in a lot of pain and they accommodate me. I am very lucky with the people I work with.

Given that your previous job was physically demanding and you won’t be able to return to that, are the company able to offer you alternatives? Have they sat down with you to see what you could do? A lot of “office” jobs have become much more user friendly with home working and flexible hours ..

I guess firstly it’s about working out what you can do … and then what you want to do career wise.

It does take time to come to terms with the changes. If you haven’t already, I definitely recommend some taking therapy and some help from the Occupational Therapy at the hospital - I have seen the OT at the hospital (although it came way too ate for me). But they can help with pacing yourself and working out what you can do ...

I’m not sure I’ve been very helpful here … but don’t give up hope on it … where there’s a will, there’s a way.

[Pairofboots]

Hi Red, all life is normal. What isn't normal is being unhappy, being distressed by what we can see in the future. Acceptance of where we have arrived is the first step. I know this took me a long time.

The rehab team is key. Neuro-psychologist can help you unpick the emotional battle between now and then. They can assess what areas need more attention than others. Occupation Therapist (OT) can as your physical skills and look at if you need to adapt, or tasks need adaptions. Pysios can help with mobility, regaining physical abilities, again it may be that adaptions are needed. Lastly a neuro-psychiatrist may help with mood, and imbalances that often follow a brain injury.

Normal is a subjective entity. We often combine our work life into what we consider to be normal, it is something that give structure to our life, and it gives us status. It is the same in some respects as a company we work for going bust, and closing, all of a sudden we have to reassess and look for a different role.

As Coffee describes her injury as her "head broke the toilet", I say I had a brain hiccup. I actually had a stroke, fairly minor from effects on limbs, but had a global effect on brain function. We term the event in a way that is comfortable for us, this is part of acceptance.

I also use the terms mark l and mark ll (my name isn't Mark). But it is a way of separating out the life before, and the life after injury.

I was stubborn at the beginning, refused all offers of help, minimising the difficulties I had, that stuff is for them, not me. Grab anything and everything that is available, it is better to try, it might just help.

I hope this helps, keep asking questions, now is not the norm,but tomorrow, next week, next month, next year will be nearer, life is a journey, there are no cul-de-sacs, just diversions. We hate when there is a tailback, but we know open road is ahead. 🍀

[Redopal in reply to Pairofboots]

Thank you! I have a neuro psychologist and neuro physios, so I’m okay on that front. The brain damage has cause many physical issues too, nerve problems etc, for one I can’t feel movement in my right leg, so I can’t walk normal etc but I broke 26 bones, had a lot of internal bleeding and the brain damage and they didn’t even expect me to wake up from the coma so I’m lucky. Thanks for replying!

[Hidden]

Hi I'm a 37 years in to trying to fix myself without support I was hit by a car at 30mph when I was 10 I have no memory of the car hitting me I bullsied the windscreen. Anyway life changed me completely after my accident. I went from a quiet shy kid to one aggressive angry lad who cared for nothing. I have drop foot on my left foot where my toes kick the floor when walking. I've tried to hide and fix my drop foot all my life. I've had so many jobs in my life trying to just fit and I did well at most of the jobs I managed to hide my foot pritty well my fatigue was the one that ended all my jobs tho as I would put my all into it but soon the dreaded fatigue showed its hand. My time keeping and absence from work suffered massively. My mental and physical fatigue was hard to manage. My physical disabilities with my lower left leg stopped all my sports by time I was 15 and I've done done any sport since. Having no support led to the darker side of life Addiction/alcoholism. Thankfully I'm 14 years clean now but it has left its mark. Today I dont work anymore as it's just too much for me to bare. I am a dad to 2 amazing lads and im a Grandad to 2 beautiful granddaughters i've brought my lads up on my own for the last 14 years. I could go on all day but in a nut shell life is harder after Bi but we survive I'm living proof of that and with the support that's out there today life can be made easier. I hope this makes sense👍sending good luck and best wishes

[Hidden]

Wise words from the above posts. My daughter had a TBI 3 years ago and was set to go to uni but I don’t think that will happen now. It’s a different life from the one we had envisaged for her. As Stammers says - life is harder after brain injury but we survive. It’s difficult but I think acceptance of how life is now is key to moving forward and finding work/life/relationships balance that work for you as you are now. Hopefully if you ring the Headway helpline they can advise you on how to go about finding suitable employment and/or support. My daughter has a mentor from Cedar who has contacts and access to courses etc and she helps her with form filling and similar (I think they’re in NI only) but Headway may be able to advise you of a similar organisation in your area. Good luck with everything 👍

[Painting-girl]

Sadly I haven't been able to get back to my previous work, but as I was relatively close to retirement I'm just relying on my savings till my state pension kicks in. Good advice above though.

For me, I've been trying to do a couple of hours a week voluntary work in an office (so far triggering mega headaches, so not great, but last week was better). I wonder if different types of voluntary work might both plug the gap in your cv and give you an Idea of what you can cope with at the moment?

[Pedal2]

Hello Redopal, being at a bit of a loss is a perfect way of summing up not just your current feelings but a great deal, if not all of the people's feelings who contribute to this forum. I don't know if knowing that your current feelings are mirrored by both myself and many others helps to soften the blow a little but in my experience finding out I was not alone was a great step in the right direction for me in the early years. Another great thing to consider to again make things seem a little better is there is no direct definition of what normal life is and hence your life and my life is perfectly normal providing we accept it as so. However, there in lies the problem I am afraid because the old normal is gone, and the new normal is different and that's a really tough one for all of us to deal with. Took me years and in perfect honesty I still simetimes feel torn between my normality now and my normality prior to my injury.

I recommend you give yourself time and see what you are capable of doing. Once you have established your capabilities you can perhaps look for jobs which suit your abilities on a purely part time basis at first of course. Always remember though that it is a slow process and you have to be honest with yourself and your progress. Finally, I do hope you can find peace in your life in the future, it is a mountain to climb but once you get to the top and accept life on new terms it can again feel normal and is no where near as difficult as the climb it took to get you there.

[Catx1978]

I'm struggling with the idea that I might not be abek to drive for a while, that I won't be able to pick my son sue to my balance, that when I do go back to work, it'll take months maybe hears to return to my normal duties. I have a neuro physiologist who is helping me work through the emotions. I don't look normal yet because I need a metal plate in place of where the skull was removed due to brain swelling.