Can someone help me understand?

can someone help me understand why being told by my local medical community that (despite having a server tbi some 13 years ago and because I am able to hold down a full time job and drive a car ect) that im "fine" and have everything under control and when they say there's nothing they can do for me why it hurts so much that I go in to a fit tears?

Thanks xx

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  • its the same story we hear all the time unfortunately, once they have physically fixed you in the medical sense then they think you are cured.

    i have been trying to get more help for such a long time.

    i recently started attending my local headway ABI group two days a week (you need to get funding from social services)

    and this is the sort of help i need, in those two days i have 4 lessons, and they are brain injury awareness, emotional adjustment, creative writing, and education (education consists of whatever you feel you need help with educationally) you can also choose to do art, drama and a host of other things designed to help you learn or express yourself

    and this is the real world help that people with brain injuries need.

    quite frankly in the 4 weeks i have been going, i have received more help than the last 7 years seeing my current consultant

  • Hi there, bex87,

    Well, if my experience is owt to go by, you react like that because it's a perfectly reasonable and sensible response to being frustrated.....by the effects of your injury....and by the feeling that medics aren't taking those effects seriously enough.

    I think it can be dangerous for non-experts to offer advice. It might be the exact opposite of what might help. However, might I raise these questions, points, whatever?

    1/ Which medics are you talking about here? Who's been involved in your case, and for how long? What sort of formal diagnoses have you had?

    2/ Do they know their attitude is affecting you like this? Have you asked them if they really understand your condition? If they're clueless, I'm sure you could suggest some online articles to them.

    3/ Do you have someone with you when you see medics? Someone who can back up what you say, and help you to push for a more sympathetic approach?

    4/ Are you keeping a diary of who does/says what, when? Could be handy, that, if you need to "assert" yourself in the future ( this means "complain" ).

    With best wishes.......

    Bob

  • It feels like a bereavement of sorts when they have fixed what can be fixed and given you the tools to manage the things that can't be fixed. It is hard to manage the lack of confidence and that side of things. I don't need more pills or operations etc but I do still need support. I struggle to initiate things like this as most of the time it takes someone else to notice that I might be needing some support.

    It is good that you have managed to get and keep a full time job. I work around 6weeks then get a break, which I need very much, then it's back to school and I get to recharge my batteries over summer. I feel lucky as I have managed to work part time for a year now.

    It is the frustration of what I can't do without help, the things people don't think about doing, for them it's automatic.

    I found that my headway group gave me a great help with social skills and they gave me an art course for a week three years running. Just being around people with similar frustrations and difficulties gives you the opportunity to swap coping strategies and just chat to people who really understand.

    It's like if I say I don't remember it's not because I have forgotten something, it's because there was never a memory made in the first place! Getting people to understand things like that is near on impossible.

    You are not alone in how you feel. I stopped seeing my doctors unless I absolulty had to as I felt so misunderstood.

    At least we have this site to chat to other people who may be more able to understand.

  • My local headway group and the local nero therispt keep telling me they nothing they can do and I had a friend tell tell them ive never emotionally recovered and it makes no difference also telling them that it hurts and upsets me makes no difference

  • Hi bexx. If you feel you still need help then you probably do. But with all your achievements/qualifications, the health professionals will see you as an example of success, in terms of recovery.

    But I'm wondering whether you are pushing yourself too hard to achieve personal goals and wearing yourself out by putting yourself under constant pressure. Maybe you're really not well enough to maintain such demands on yourself but, like many of us, you're reluctant to admit it. Just a thought bexx.....none of us know each other enough to get a true picture, so we can only guess at problems, and maybe look for ideas.

    Goals are so important for all of us, but is it possible for you to take a few steps back, and see if you can make some ajustments to your expectations ?

    Also, how did you get on with the change of medication? xx

  • I go to the doctors on Tuesday so I havent had them, my mum puts pressure on me to achieve, im have to "super seed" the expections of those of a "typical" patient, I made a passing comment that what im currently doing is tiring me out and her response was your destined to achieve this or something along those lines

  • Hi Bexx, Janet here, it must be very hard for your mum, we all want the best for our children, but you do need to rest when your body tells you, I was very hard on myself, pushing and pushing, the DWP wants me back at work but I know I'm not capable if I was I would go, only last Thursday, out of the blue I slept all afternoon, if I'm too tired I stop achieving and everything shuts down, try and get her to cut you some slack, my son bought me a book when I was in hospital, it's called Brain Injury rewiring for Survivors, gives lots of tips on how to help yourself, written by a lady who is still improving years on, very inspirational, it's by Carolyn E Dolan. You are doing great, try not to rush things too much and you'll still achieve those goals take care Love Janet xxxx

    Ps I think they do one for family members too, perhaps you could get your mum a copy, just a thought!

  • Hi janet, I will look in to the book for myself but not for my mum j know that sounds harsh but I think she likes to me to act as if the injury doesnt affect me so while I do slow my pace at times I dont tell her I havent told her why I dropped out of my foundation degree course when I was 19, I didnt tell her how close I got to not passing my level 3 apprenticeship, I didnt tell her how close I got to not getting on to the second semester of my level 4 apprenticeship but where she lacks to apply pressure others do it for her (unintentionally) meaning of work and college but I dont mind them applying it because unlike my mum they will give me appropriate space and help unlike her

  • Life is one long pressure these days, you have youth on your side, just keep on taking it at your pace, you know best how to deal with your mum, and you will win out accept all the help offered you and do pick up that book, it helps explain your feelings and reactions and how to get the best of yourself Love Janetxxx

  • Thanks xx

  • It sounds like your mum is in denial.....maybe that's her way of coping. But you need to live your life at your own pace. No one has the right to demand that you adhere to their standards when you are a brain injury survivor and already doing the best that you can.

    It is your life, your health and you need to take as much control as you possibly can to ensure that your physical, mental and emotional health are properly cared for. Do you mind me asking what age you are......maybe it's all too difficult ??

  • it could b anxiety/depression.have you tried to talk with your medical team.just a thought.take care n i truly hope u can find inner peace.god bless.xx

  • I'm guessing you were a high achiever before, and have worked amazingly hard to get where you are now. Some of us hit a brick wall when we realize that no matter how hard we work we will never get back to before again, I felt as if I'd fallen into a black pit. Your consultant feels that you have made a fantastic recovery compared to so many of his patients. It's OK to be kind to yourself. If you have a GP who doesn't get brain damage or isn't sympathetic try to get appointments with someone who does.

  • When I had my tbi I was in secondary school and before and after my accident all I knew of was to work hard, im hoping the anti anxiety tablets I get on tuesday help and I've come off my anti depressions due to side effects

  • Hello bexx87,

    Sorry to hear about your troubles. It sounds like some sort of 'Post Traumatic Shock' or etc., but don't take my word for that, get it checked out, and if you aren't happy with the diagnosis or etc., you can always ask for a second opinion (but do it respectfully, try to work with them, because, they have your best interests in mind? It is in the nature of an organisation like the NHS, working with super specialised people like neurosurgeons & etc., that it might appear as, if once an operation is over - and you are alive & kicking - that there should be a certain sense of completion (in their minds) - 'their job is over' - and they would think in terms of handing you over to another team the 'Rehabilitation' consultant?

    Unfortunately, in cases involving brain injury there is less certainty that outcomes will be predictable, in fact, they can vary enormously, as in my case: I suffered almost exactly the same injury as president Kennedy, and the result were very different - he was killed almost immediately, and I'm still here 46 yrs. later to tell you the story?

    As for your 'condition' of 'breaking out in tears', (I didn't understand whether you were implying that you are just now or recently 'breaking down into to tears' or this has been happening ever since, but whichever is the case), if your tbi is the cause either directly or indirectly, or it may be that it hasn't got anything to do with the tbi at all? If there is some connection and it is possible that it is even if the former is the case, because, it could be some kind of delayed shock reaction. We do 'mourn' for parts of our body that have 'died' (lost limbs and parts of our minds, & etc...) and so it could be that this is what your mind is going through, sometimes ones mind seeks to protect itself from these things at the time, but it can all surface again later on. And, as these things (can be) profound emotional reactions, that have lost their context, so it can be or can appear, like things 'bubbling up' for no (seemingly) reason or cause?

    If you meant it was a real 'physical pain' (& not an 'emotional pain', I know the two are not always distinguishable) that were causing the 'tears' and providing your neurologist has understood this, and that the other possibilities have been ruled out, i.e., they are satisfied with this explanation of the cause of this 'pain' and they think it is 'not harmful'? I encounter a lot of these kinds of 'pains' and 'feelings', and whichever of the two it is, is beyond the point as it is just as painful to me, and while drugs may help somewhat they are not the answer (because they very often do more harm in the long run), some hospitals have 'pain clinics' and there are many causes of pain as there are many different therapies, try all of these and don't give up, like they say in the adverts "you're worth it!!" I personally, found acupuncture worthwhile, and don't dismiss things like relaxation therapies & etc...the thing is we don't really 'know' what pain is and there is no doubt that to some extent we control it. My attitude has a lot to do with my reaction to pain, so I try not to let it run my life?

    Like I say, I am, Not a Doctor, so this may not be the cause of your troubles, there are some good councillors and other professionals out there, but whatever it is, its worth a go. Get yourself down to your GP&/or consultant and have a talk to him or her they be able to point you in the right direction.

    Good Luck,

    Paul.

  • @cat im 25 @taul theres nothing physically wrong just emotional and I dont know rehabilitation is I know only from books not personal experience the only help I got was to improve my speech

  • OK bexx, I'm wondering whether your life's going in the direction you really want it to, or whether it's more about pleasing others. There's a limit to how well antidepressant & anti-anxiety medication can help, if you're not addressing the cause of your unhappiness.

    Have you had any psychotherapy or counselling since your tbi ? It can be astonishing, how talking to a complete stranger in an organised/regular fashion, can reveal serious discontent in your life and throw up some very useful questions ( and answers).

    I'm really just guessing at your problems, bexx, and that's my point......a therapist wouldn't be guessing.......he/she would have all the facts. Anyway, is it something to consider before seeing the doc. tomorrow ??

    Good luck with the medication. It's possible that if it helps your mood for a while, you can get things into clearer perspective.

    Please keep us updated, and good luck for tomorrow. Love Cat x

  • Unfortunately, when anyone mentions the word "disability" the expectation is someone in a wheelchair or some form of physical disability they can see. Luckily for us, we know that this is not always the case with brain injury.

    I say "luckily, because we know that is not the case and we are now the experts and with all our expertise we can not only help ourselves, we can help each other.

    I am just over 4.5 years down my journey. I had Neuro Rehab over a year ago because I met a fellow survivor who had, had treatment there. I was diagnosis end of last year with chronic depression as this word "low mood" was in the Neuro report, but I didn't realise it meant I was depressed. I luckily had CBT from Community Services as my Occupational Therapist picked up on this. I also had a neurological psychological assessment and now know what my outcomes are so that I have developed strategies to deal with these.

    Everyday is a challenge and everything has to be planned in advance. I have notepads so I can write on, a phone with alarms to wake up, eat (breakfast, lunch and dinner) as I have no sense of time. A dictaphone and an iPad to record conversations at appointments, meetings and lectures. Great tool.

    If a meeting doesn't go well I can rerun what has happened write down any unanswered questions, make another appointment or put it in writing. I always ask someone I trusts opinion before this as my perception or interpretation can be distorted due to the brain injury.

    Yes, it is tiring but it's how I cope now. If I miss something it doesn't matter. There's always tomorrow. I'll never be the person I was, but that's ok now. I know the person I am now. I am involved in lots of groups . I participate in research, advisory panels etc.

    I have recently passed a Gym Instructor course through InstructAbility, a course especially designed for people with disability so that it will be the norm to go to a gym and be trained by another disabled person. I now volunteer as a Health & Fitness Advisor at the YMCA Central London. Exercise makes you feel good. Reduces stress, helps with fatigue etc.

    I am in the process of applying for a grant to train as a level 3 Personal Trainer. I also volunteer for Age Uk Harrow as a falls fitness trainer. Helping people in their homes to exercise after a fall.

    How did this happen? I was watching a TV programme about a man who was blind and did the course. A year later an organisation sent an email to see if anyone was interested in the next course. That was April this year. Started course in May and passed end of June.

    Fate has a funny way of showing itself, but you have to go out and be seen.

    Hope this helps.

  • Hi Bexx,

    I am really sorry to hear of the way you are feeling. Whatever the medical professionals say, it is clear that you do need help here. Can I suggest that you call (preferably) or email our helpline on 0808 800 2244 or helpline@headway.org.uk to talk through the way you are feeling and your frustration with the support you are not receiving?

    Alternatively, if you send us a private message on here with your phone number, we can get in touch with you.

    We look forward to hearing from you soon,

    Headway.

  • Hi bikerlifestyle i can understand your frustration.I had two operations on my head,as i was getting cluster headaches on and off throughout the day everyday.So i had the operations,it cured the headaches,but left me with a very bad shortterm memory problem and change me totally,ruining my relationship with my fiance of five years.I became depressed and a right misable peice of work,so we split up very quickly,which really hurt me.I now very rarely go out, do not like crowds.But just recently have started going to invites i have had to partties.I also have my brother his wife and my neice living with me,and i drive them round the bend with my mood swings,in short im not a happy bunny anymore,and im looking for a light at the end of a very dark tunnel ,but my batteries are totally flat all the time.The only time im happy these days is when i go to the local gym,but i rarely talk to anyone,keep myself to my myself,which probably makes people think im mr grumpy,but thats my fault not theirs.But im determined to get some sort of life back.I realise i will never be the old me who was the life and soul of everything,but you just have to make the best of a bad deal..Ido hope i havnt made you feel depressed by my problemsm you have a good day.

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