Recovering from a brain injury

Hi... I am looking to connect with people recovering from brain injuries. I never got a definitive diagnosis, but I suffered from acute demyelination of some of the nerves leaving my brain, probably a post viral event. I spent 5 weeks in hospital in June. I was very confused, and kept trying to escape from hospital. I have had a phased return to work (I'm a veterinary surgeon), but after having made good progress, I have stalled a little in my recovery. My employers spoke to my GP, who, without talking to me, told them I should not be driving. This has been very challenging, as I live out of town and have horses to travel to and take care of, as well as severely limiting the work I can do. I feel very isolated and unsupported; I feel people are watching me and commenting on my progress to each other, rather than talking to me. I also feel that my colleagues are tired of my illness, and fed up of me.

If anyone has any advice or relevant experiences, I would love to hear from you.

Thank you for your time - Rachael

37 Replies

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  • Hi there,

    20 years post brain injury for me. I was 'medically retired' immediately and so can't really help you with back to work advice. But in any other aspect of like feel free to give me (and pretty much any other of the site's users) a shout and I'll be sure to help in any way I can

    All the very best

    Andy

  • Thank you. Are you driving?

  • Afraid not. I lost my left side peripheral vision after the injury. It would make driving tricky, what with only being able to turn right :)

    I developed epilepsy too, sadly my driving license vanished mere weeks after the accident

    Hey ho

  • Hi Rachel

    Sorry you are having such a tough time. I am 6 months on from ABI and struggling immensely with trying to return to work. My advice would be to try and get a proper neuropsychological assessment done, so that everyone knows what difficulties you are having. May be ask your employer for a referral to occupational health to see if they can support your return to work.

    Headway have some really useful leaflets they can send you if you ring them, you can give them to your employers etc. Sadly the lack of understanding of BI is very common. Good luck

  • Thank you. I have had many neuropsychology tests, which have shown regular improvement. This is the only doctor I have seen regularly. I did see the OT when I was in hospital, but another review is a good idea, thank you.

  • You're welcome - just to clarify OT = occupational therapist, I suggested occupational health which is more to do with support for work such as adaptation, reduced hours etc. Your employer would need to refer you for this if you choose that route.

    Good luck

  • Thank you... I was mixed up. I have an appointment with my GP on Tuesday and will ask about it then.

  • I read your message, and I was interested cos you've been dealing with horses.

    My TBI was off a horse in January 2013. The horse fell over a jump, and on getting up, kicked me in the face breaking my right orbit. I also got 6 haematomas over my brain. I can't remember anything for 2 months after my fall.

    The brain is a strange thing. I have found that you have to work it. I have had to teach myself the alpabet again, and numbers, and then how to write. My talking is much better than it was, but I still battle.

    I can drive, but my opthalmologist does not want me to have my licence yet, cos of my vertigo and double vision. I will get my licence, cos I am determined.

    I am sure you need your licence too. Good luck, and it wish you all the best in your recovery. It's still early days!

  • Wow, you've been through a lot! It's been really helpful to hear from other people with BI, thank you

  • Yeah! My neurologist has said I will take 5-10 years to recover. I'm trying to halve that! Not that I want to discourage you, but TIME is now our friend, not our enemy!

  • I don't think I appreciated how long it might take - I thought, once I was out of hospital, that would be it!

  • I had a fractured skull with some charming bleeds around the brain last December.

    I had 6 months off driving advised by the hospital, so am now back driving.

    I went back to work far too early only a month later in a phased return, even now work make reasonable adjustments, my main problems are tiredness/fractued and my working memory which was woeful is worse.

    I used to be slow and wobbby walking but the fanastic physo's helped and unless i'm attempting to stand in the pitch black it's all good.

    The phase you'll hear around working with poor health/disablity is reasonable ajustments.

  • I'm in the middle of a phased return, but as I'm not driving, the work I'm doing is currently very restricted. It makes me feel as if I'm deteriorating. I haven't heard the phase "reasonable adjustments", but I will mention it. Thank you.

  • Hi Rachael

    I haven't had an ABI myself, but have worked in the area for a few years (inc. organisations such as Headway). Someone I worked with found this story by a lady called Maria Romanas, a pathologist in the US, really interesting and helpful (http://www.medpagetoday.com/Neurology/HeadTrauma/44084).

    Philip

  • Ah, the link isn't working, sorry...

  • thank you!

  • Hi, I'm over 2 years on from my BI and have never felt able to attempt driving, although I do miss the independence it gives. I have been asked bt my GP and consultant why I am not driving because there is no obvious reason why I shouldn't, I have some peripheral vision loss on my right, but it would not affect driving.

    I have lost a lot of my confidence and I do t multi- task well anymore, I keep saying I'll give it a go, I just find it daunting to get behind the wheel again.

    I am unable to work because of issues with my balance, fatigue and I need a quiet environment most of the time, even shopping in the supermarket causes me problems.

    However, I have regained most of my executive functios etc.

    I'm sure with perseverance and patience on your side you will get there, you're doing well, it's just no-one can tell how long it's going to take.

    Best wishes Janet x

  • Thank you, Janet. And that is the thing, there is no set time as to how long it will take. I'm just happy I'm progressing.

  • Hi Rachael,

    It is important to let things take their time, you feel you want to get back to who and what you were doing? And, may be you can't quite see yourself as others see you, how you really are...? Judgement is often squinted and flawed, you just have to let things physically settle down and don't think its over then, there are often hidden psychological consequences. The "you" that you think you are might seem all right to you, but one cannot always "see" from the right perspective, and this is a very dangerous time to be not seeing reality of the world? Take your time to recover, all the facets of life, make sure they are in the right order, all pointing in the same direction, we often forget to check this, we don't check to make sure our legs are both pointing in the same direction, but mentally and emotionally that's just what happens with a brain injury. Give yourself a good mental M.O.T. do it somewhere safe and non-threatening, but somewhere where you can rely upon to know "you"? Give yourself time to get to know and interact with your friends and colleagues in a relaxed non-threatening atmosphere, and ask them how you seem to them, you should be able to gauge if there is anything wrong? It is better to get it wrong in a place where it doesn't matter if you "crash and burn", rather than doing it for real, "slowly, slowly, catchee monkey?"

  • That's good advice, thank you. Although I can hardly bear to ask people how they think I am doing - it feels self involved, and I don't want them to think about my illness. I also think they are getting fed up of me.....

  • You have got to be ruthless and determined, let nothing stand in the way of your recovery, friends & family will understand, but make no mistake some will get 'burnt' & 'fall by the way side' & that will apply to work & etc... There will be time in the future to apologize and so on, but what is vital for this is these other perspectives, not that I'm saying that you should necessarily take these to heart. When criticizing and analysing one's self, it is only by knowing what others think can one assess, whether or not you are getting across your point or it is some how being twisted & etc. If ever were was a time for self involvement it is now, and if you don't think and speak about your 'illness', then how do you expect them to understand what has happened? There are going to be some (possibly) that will not understand or who just don't want to understand, but there again do you want people such as these in your life anyway? This can be seen as an advantage, and you too can learn some of life's by even this?

  • "There are going to be some (possibly) that will not understand or who just don't want to understand, but there again do you want people such as these in your life anyway?"

    I have had one so-called-friend, who came and told me I shouldn't be asking people for help (a lift to the hospital) and that by asking I was lettingmyself down, and I should be dealing with my problems by myself. I am going to cut this person out of my life.

  • I wonder if some of the Headway or other organisations' literature might be of some help in getting over to others the nature of a brain injury?

  • I think it would - they're sending me some leaflets. Thank you.

  • I don't want to sound too negative (or to suggest that 'nemo_really's' advice isn't sound), but this really gets to the heart of what a 'brain injury' means, because, of its centrality to identity and physicality (not only who one is, but also what one is, & etc.), and the effects of emotion and personality, & so on, I'm afraid it is a field too large and too complex, to be amenable to leaflets? Leaflets are a good way of getting to know what is available, factual stuff, but when it comes down to getting to grips with stuff like, “How, am I supposed to 'feel' and react to this new world I've been put in?” That is, something that we all are still searching for answers to, and I include myself in that as much as anybody else, and I received my first head injury over 50 years ago now? There are no right or wrong answers, and very often only a choice of less poor or disastrous, but that's just life? The only thing I can say is I've read some of the many pages here, not all of which will be relevant, but just reading about the problems of others as well, gains one insight of their problems and sometimes those are of use to us? I hate to say it but you make it up as you go along.

  • I can really relate. I met with each of my staff members and explained to them what had happened and that when I do or say things to not take it personally and apologized in advance for what I might say. I also let them know how much I appreciate what they do and for them understanding and helping me. We also talked about what we would do if there were a problem. They have all been great about it and I continue to let them know it is my problem not them. They know to just ask me one question at a time, not try to help get the answers out and not all try and talk to me at once. As to friends, if they are real friends they will stand by you and be willing to help. Some will just not be able to last due to their own abilities to deal with the situation. I think for most people we think this way about injuries, surgeries, and illness - it is temporary we will be whole again and everything will go back to normal. For me I have found this is not really the way it works with brain injuries. I'm creating a new life which is quite a change from the normal healing process I've been used to with healing everything else. I'm not sure if I'm making any sense at this point, but I wish you the very best in creating you new life.

  • I shouldn't really be on here anymore - I've been diagnosed with MS and therefore don't fall under the Headway umbrella. Work has been awful - they seem fixated on how ill I was over a year ago, and unable to appreciate how much I've improved. They take my personality changes personally, depite my trying to explain it's all part of the disease process. I'm doing my best to find a new job....

  • Well done for even trying, you sound so positive ... It took years for even a diagnosis for me. My original injury was at the age of 2 (subsequent injuries at 38 and 40) and I was diagnosed when I was 47. I have found cutting out caffeine helps the tablets to work, but my injury sounds so much different to yours. I still get my headaches, dizziness, etc. which I have had all my life, but not as often or severe now. They used to be every day, and at least an 8 (0 to 10 I rate mine). I am on Topiramate to try and reduce my headaches. Fortunately I can still drive, but have been tested twice too ensure I am OK, I just have a warning that if I feel too ill I must pull over and either swap drivers or wait until I feel better again. I get warnig signs of at least two hours. The problem with the world is it moves too slow for me, diagnosis, getting better, etc. Every blessing with your future.

  • Thank you. Things do feel like they are moving slowly. I doubt I will ever get a diagnosis....

  • Hi.

    I received my TBI more than 9 years ago, falling off a bike. I did go back to work after 18 months, but I am most definitely not 'back to normal' - I am officially 'blind' (although I'd say partially sighted), so I will never be able to drive again. :-(

    It is outrageous, your doctor telling anyone else information about you. I can't believe that he thinks you cannot drive, but never said that to you!

    However, if he thinks it is not safe for you to drive... You need to speak to them about it, quickly.

  • Hi! Thank you.... It's so good to hear from so many people on here. That's what I thought abot my GP's actions! I have spoken to them about driving - still waiting for the results of my last MRI...

  • I suffered a TBI last October after being pushed over by a pony and hitting my head on a granite curb. Needed surgery on the front of my brain. Surrendered my licence because I was advised to, have reapplied but was told I had to wait a year before I could reapply. I rode a moped and now have to bus it to work (12 miles away on Dartmoor). I had a horse, but soon realised I could not look after him so had to rehome him, broke my heart. I am back at work, phased back in over 5 months, have been doing 30 hours and am now struggling with severe fatigue. But can't afford not to work that many hours. sorry it's not a better report, but everyone recovers differently

  • HI! I'm so sorry you had to rehome your horse. Losing mine would break my heart, too. Good to hear about your situation. That's the think with BI, I'm finding out - everyone is a little different. Moped is a good idea, I might look into that. Thank you :)

  • If you can't drive, go on gov.uk and look for 'access to work'. They can help with funding a driver for you if you have a disability which is affecting your ability to work. Sadly, people often aren't aware of this scheme -I hope it may help you and good luck x

  • Hello,

    My doesn't everyone have a lot in common here and I thought I was the only one that is bonkers. Your time in hospital although tragic has just made me laugh out loud, the wife thinks I'm off my trolley anyway. It reminded me of my time in hospital when I was just comimg round from three weeks of unconsciousness, not that I remember but my parents told me that I escaped from the ICU wearing nothing but a smile and was found in the grounds of Battle Hospital in Reading. Thank god they found me, I might have ended up naked in the Butts Centre just up the road.

  • It's a real devil this driving thing. My TBI was in 1967 and I've never driven [well once]. On an appointment with a neurologist mid-june 2015 I was told that I must never drive. I have until the arthritis took hold used a bike. Kept me fit and ruined my joints.

    I went back to work two weeks after being discharged from hospital; got the sack, took another job, got the sack etc. Took around 5 years before I noticed a change but things changed noticeably after 10 years and longer.

    It all takes time and how we are left is never a desirable state; the thing is you can find others who are in a much worse state for a less injury.

    You will find a way around your problems - give it a go.

    Best,

    Paul

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