How to cope alone after a head injury?

[kel1203]

I've been home nearly 2mths after having a major head injury, my therapies tell me how well i'm doing...as long as i'm not tired, my speech is good and general ability is getting better too, but the only thing is that I feel completely alone...nobody really knows what it's like. Even a therapist told me that she's running out of things to use because i'm doing to well...but every day is so difficult, my brain is far from being ok. My accident was only in October, so I've got a long long time to go yet before I'm going to be better. How are you suppose to cope it all when nobody can help you? (I'm not sure if that's entirely true, but it definitely feels like it) Just to clarify, I do live with my partner.

[brighton88]

I think some people do understand. of course others dont. but a brain injury is such a lonely journey, please take yourself off to a support group where you can meet and hopefully joke with people who are or have been where your at...good luck your not alone.

First time I tried to walk in public, I was using a walking stick while holding tight onto my helper,I felt so ashamed at the state I was in.A friend came with me who had MS and he'd just got a new electric wheel chair. Whizzing up and down in his new chair he called out playfully about my terrible walking. It was the first time I'd laughed and it felt so good to see the funny side trust me it does get better.

[iforget]

I agree with Brighton88 living with a brain injury can be a lonely old road at times... and often people don't realise that can still be the case even when you do have a loving partner at your side.

I think we all learn to cope with it in our own way and at our own pace. For me it was a gradual process and I didn't really notice it happening.

Having contact with other brain injury survivors can be really useful...just having somewhere you can go and be with others who have an understanding of the journey you have been on so far and the journey that lies ahead...who know the difficulties we all face...Its good to have a place where you can simply be yourself. For me that place was my local Headway group....and it was the only time I was with other people and away from my husband

Of course nobody can know exactly how you feel or what you are dealing with because we are all different. Although we may all have a brain injury and will have many areas of common ground, our injuries and the effects may vary...and of course our personalities are not all the same either. We were different individuals before our brain injury and although our lives may have changed drastically as a result of our injury,. we are still different individuals now... ..

People will continue to tell you that things will improve...and they will...but I know I found that extremely frustrating because that does not help with right now...

Boy I used a lot of words to technically end up saying that I don't know the answer to your question Hang in there...

[kel1203 in reply to iforget]

Thank you, everybody. This is my first time I've joined this, and it feels great to find out i'm not alone.

I know there's some where local that I can go, so I'm going there today.

'iforget'...I'm completely with you when you said about 'people will tell you you'll be ok'....it is very frustrating. I had a psychologist (i think that's what you call them) that said that too, it made it so angry that a person who was supposed to help me through it, was saying that! No needless to say that I didn't see that person again. Thank you again for your response, it's been very helpful.

[ncmurphy1951]

i truly have empathy with how you feel after 47 years surrounded by people family loved ones work colleagues i was eventually discharged from hospital when i was 49 having been given no support from the system at all closed hospital door then get on with it

on the advice of a friend i contacted adult social services who in no time arranged carer support and benefit support meals on wheels i am fortunate to have friends who appreciate my issues and keep me connected with the world i once knew ignorance of the issue facing brain injury victims is rife usual response as you crippled in pain struggling is " oh you survived arent you lucky these fools dont know a tenth of the battle raging every day

[davesdad]

Your post really hit home for me, my son had his accident in October 2006 so we were at exactly the stage you are now in January 2007. Like you he recovered amazingly well over that short time given his serious brain injury.

I have delayed a bit in writing this reply because I wanted to think carefully about what I can say that might be helpful.

I guess the main thing that I want you to know is that though we (and he) thought he was doing well then he is very, very much better now.

Something that struck me in you post is that you are aware of not being OK. David was like that too and I think that this has played a big part in his recovery, hopefully it will be the same for you. David has always been very self-analytical and I think that this has helped him perceive where his difficulties are and often find work rounds for them. In fact his ability to “mask” his weaknesses was sometimes a problem in itself because people could find it hard to understand that the issues he had were genuinely debilitating.

You will inevitably want to move forward as quickly as possible but you really do need to be gentle with yourself at the same time. You have already noticed that getting tired makes things worse. Please try not to get too frustrated with your therapists, they can maybe see that you really are doing as well as you possibly can at this stage (and all credit to you for that!) but that trying to push too far too fast could do as much harm as good.

The fact that you feel alone is no surprise; no one else can know exactly how you feel and what effect the injury has had on you – the rest of us can try to understand but even if we have the best of intentions we cannot fully share what you are going through.

My perspective is that of a father – David was 16 in 2006 so I can’t help but see things from the point of view of those around you. You have your partner, probably parents and maybe one or two close friends who are in the same position I was back in January 2007. Though it is hardest for you of course, they are going through a difficult time too. You feel alone but please remember those people around you really want to help you and just have no idea how! You will all work it out in the end but it will take time for them to discover what you need and what they can do.

Sorry I tried to avoid that dreaded “it will take time” line but it crept it in the end – forgive me!

I agree there is no point in just saying “you will be ok” but the thing to hold on to is that you are doing great already and your continued recovery will mean that you get better still – very much better in fact.

Hope you got on OK at the group you went to.

[kel1203 in reply to davesdad]

Thank you for your time, every response here just amazes me. Thank you.

[Crocus]

There's some great responses to this question. I'll add my perspective too. I think the loneliness comes because there is a realisation in all of us that our recovery , wherevr you end up, is your journey to make alone. Yes people can love and support you, that really helps, but when all is said and done you are the one adjusting to the changes that only you can truly feel, you have to deal with the pain and most importantly face the loss of life as you knew it previously. That's big stuff to swallow. But taking it in bitesize pieces is the way to go. Someone else said on this post about being in the company of other people who have experienced similar can help, it does, but they doesn't have to be brain injured. I have friend who survived cancer who helps me probably because she knows how hard it is facing your own mortality and changes to the life you were overall pretty happy with.

Keep talking to people, here, at your new group and to those who offer to help. Knowing its early days in your recovery and taking things slow will pay dividends . Best of luck.

[NJH11]

'Recovery' is such a long journey, and just when you think you have it in the bag, you realise a few months later that you were not as good as you thought back then....ie: you will improve all the time. Even those of us without brain injury, learn, grow and develop all of the time.

Your question was related to how to do this 'alone'....that is a very well used word in the brain related injury area isn't it. By those in recovery...and also by the loved ones supporting that recovery. I am my husband's biggest supporter but also his biggest critic (I have been driving his programme of recovery since his discharge) - we are 2 years post his severe injury. Every brain injury is different - and we are all different....but we do all have one thing in common. So please, do not feel completely alone.

xx