I can't answer as I'm not a survivor, though relief you have good family support, I've been following you Charlie90, you are inspirational with sharing your reflection to give insight and I'm sorry your having a tough time x
Yes I nursed and now care for my husband, with still working full time, two kids solely he's just entered year 3, and everyday is rehabilitation day. He can't talk about how he feels, illness or any emotions without demonstrating via behaviour, so with your posts along with others its supported rationalising what's happening and sussing out the behaviour demonstrated, however he still remains very impulsive and keeps me on my toes (literally). Also despite his wife for over 21years, I will never know what it is like for him.
A while ago we had scare with Epilepsy and your posts on this helped me judge (I'm no medical expert), not to say a scare won't happen again but when you mentioned medication as well I looked into repetitively to answer my own conclusion with symptoms, I totally ignored neurologist 'he basically wrote my husband off' I wasn't having none of it, it's not what he said, it was how he said it ( took me a further 6months to accept this neurologist view, but not professional opinion). Basically only for my husbands needs with sussing out issue I rejigged our daily repetitive routine forward by 90mins, it took a while to get near enough perfect but we're on 8months now it going well and no scares demonstrated.
You give clear insight, people like me a wife/carer can understand when observing, all the input you and others give don't happen click of finger but it stays in head to help problem solve and be patient. You are very good recognising changes with yourself and although I can't help or give answers on this particular post, I know in time with your reflection, patience you will be literally be telling health practitioners exactly what needs to happen and how it's going to happen. X
Firstly, I will say that very few people, even family and friends can comprehend how you might be feeling or reacting. Its not their fault though. I would not want anyone to have to go through the trauma of any kind of BI so you sort of have to accept it will be beyond them and their comprehension or they will make their own decisions (which may be wrong).
So self reliance and analysis plus plenty of rest, suitably healthy food and fluids at regular intervals, plus knowing and accepting your limitations seem to be the answer.
Shockingly I was talking to a former nurse a few weeks ago about other things which turned to hidden disabilities at which point I unusually showed her my Headway card.
Instantly she understood and talked about a neuro surgeon of whom she was aware.
Very few people have such instant recognition but it was great. Far too many either just dont understand, care or pay lip service to what is going on for us.
Even many family, friends and carers dont fully “get it” although there are good people out there, and thank goodness some do, especially those who assist on the Headway helpline. A heartfelt “Thank You” from me, to those who do.
Maybe that will change when Sir Chris Bryants private members Bill gets through Parliament. It might change a little, but changing attitudes and behaviour takes time, sometimes generations to become effective.
So I just try and take each day as it comes. Its ok to have down days as well as major successes. Everybody experiences these, BI or not. Its human nature.
So celebrate your personal successes and feel good about them when they happen.
Remember you are not alone.😃 Stay positive, and keep a personal diary of successes that you can reflect on.👍
Charlie, I don't know what others do, but I just muddle through. The amount of times I have been asked what I need, I still don't have an answer. The so called proactive help that is meant to exist, doesn't. I know life is a bit of a pickle, and I don't do it very efficiently, but I do want I can, and hope that inspiration arrives for the bits I can't process effectively at the moment. Funny the fire brigade turned up the other day, no, I hadn't started a fire, they just seem to turn up now and then to do something, they normally check the alarms, but amongst their forms they said they will make some welfare referrals which is more than others have offered, will see what comes of that.
Hi Charlie and thank you for your post, it's all very familiar to me. I don't have family nearby, they live abroad and my son is hundreds of miles away so I can't rely on family to support me. My friends, all except one really don't have a clue how I feel so I just do my best to get through each day on my own. Headway and Mind are both awesome but nobody knows how tough it is to live with BI and it's really scary and very isolating sometimes.
Realising I do need help with hoovering, changing my bed and other household tasks is very frustrating and I still need to find the courage to reach out and ask for that help. In the meantime it just doesn't get done as the fatigue is overwhelming.
I am under a brilliant Neuro Consultant at the moment but it's taken me 4 years to get to this point and I'm still waiting for answers and undergoing numerous tests at the hospital. All I can say is well done, you're still here and you're fighting to be ok! Acceptance of the situation is really hard but essential for mental and physical health to be able to navigate life now that everything has changed.
hi, first 10 years my support was mum & dad, dad passed first, spent several years supporting mum. She developed dementia, I became her career in stead of she mine! Elder bro lived next to her but his wife had cancer, sis was little support as her hubby own medical probs. Younger bro now my career, brilliant at it too!! Lost all my social life, hubby. Had to join a disabled club, did art and pottery. Became a volunteer for the centre. As developed myself found great support there. Funding closed centre, either u social worker or support should offer u help to find new social life will be challenging!! This site supports me greatly, funny that u can talk, ask strangers that prove very useful!! Hope u find a life again! Always people here to help as u developed, we are always here to help!! Keep safe n SMILE to spite u injury!!
I'm with PairofBoots on this, just muddle through as best as possible continuing to look for help in any and every direction.
Yesterday I went for an appointment at the Brain Injury Service with my Clinical Psychologist lady, she has done more to help in the 3 months since Christmas than anybody in the last 25 years. I was surprised the direction our conversation took - the chairlady of our local Headway group had complained to her I am getting aggressive and unpleasant! Basically I want to make sure anybody unfortunate enough to need our help and support in the future gets it which has not been the case for me. Fortunately Dr Pam does not believe I am aggressive and I think my feedback will be returned.
I have a meeting to attend at our local Headway group which might be interesting 🙂
Indeed my local Headway group meeting was interesting, a complete change of attitude from the leadership and a most productive time was had. It would appear I am not considered aggressive but just want the best for everyone 🙂
Hi Charlie. I tend to live by the premise that 'What will be will be' and take life one day at a time. The 'What ifs' have driven me to some gloomy places over the years, but things I've dreaded have often resolved surprisingly well or taught me new coping strategies.
I have a pal who comes and goes but I cope mostly alone which suits me as my biggest bugbear is being judged on my so-called 'offbeat' lifestyle. Some days are tricky, more so if I have extra health issues or injury, but I need my freedom. I won't bother my son or daughter but, in an emergency, I know they're only a phone call away.
My passion is my garden, and looking out each morning at my own private oasis (even on rainy days) is cathartic. I manage to keep it in good order despite a long term knee injury using a brace and with the use of humour and a few swear words here & there !
I hope you'll find some solace in talking with others here m'love ..... Cat x
Hi Charlie Cats right about the what will be will be,I had my tbi 3 and a half years ago at my sons in Devon (I had moved back to Belfast 6 months before)My son wanted me to stay with him for a year but I knew if I did I might never be able to manage on my own and that was important to me to be able to do so, it's just trying to put yourself back together as best you can.Blackboards are in the kitchen,postits on the coffee table,timer on the phone is constantly on to remind me that the cookers on or the washing machines on,hearing aid in because of the tinnitus and I have no regrets I bumble through on my own it's just sometimes figuring out how but there will always be a way.Last year I even got back to going on holiday before I had my accident I'd meet my friends from Manchester at the same hotel every year and that was nice to do ,if there's any issues I just say I've got a brain injury it isn't anything to be ashamed of its all about working around it and you only get one life,good luck Charlie 😊
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