Latest blog from: hopegoesupanddown.blogs... - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain
I don’t know why, but after 555 days suddenly I can’t breathe. I feel smothered by anger, sadness, confusion, responsibility and fatigue.
All I can think about is what is lost; all the experiences we were going to share, the pride I know I would have felt watching him be an endlessly amazing father and radiographer, the chance to be a mother, my career, my social life, my future.
I spend all my time trying not to show Jake how broken I feel, crying when he’s not there and closing myself off pretending to be strong, positive and cheerful when he is. He’s got a brain injury, but he’s not stupid; he knows.
I’m sitting here now on the sofa in the lounge of our perfect little home (which we must leave and which ‘they’ want us to swap for anything bigger, regardless of whether we actually want to live there) with hot tears splashing on my laptop, trying to bring myself back under control before I climb into bed with my Jake.
I know this is grief, I know this is normal and necessary, I know it will pass.
But it hurts, in a way I can’t even begin to explain. I am burning at the centre of my soul and I want to close my eyes and sleep forever so I don’t have to feel it anymore.
But then my beautiful man would be all alone and that would be so much worse.
So tomorrow is day 556 and I will get up and start again. Because I know this is grief and I know it will pass.
Written by
Dorsetcharlie
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Oh Dorsetcharlie I feel for you so much. I cry for my Dad, for me for his 90 year old Mum who has to see her son unable to speak or walk and doesn't know what he is even thinking. For all who have been affected by this cruel situation. I have cried tonight too, even after 7 months I will never get used to this. Some days are better than others but its always there. Thinking of you, stay strong but there is nothing wrong with a bloomin good cry xx
Dorsetcharlie, It doesn't help does it when you already have the wisdom and the experience to understand your plight.....it hurts just the same, Yes, this is evidently your time to grieve and you know too well what a lonely emotion grief is. I'm feeling similar pain just now.....my dear brother died on saturday and no one can make things better......so I will learn to live without him.....and you will learn to accept your new life......after the grieving subsides.
Thinking of you & Jake with hope and best wishes. cat x
So sorry to hear of the pain you are feeling. The pain is never-ending. I can say from honest experience that you will never come to terms with it but you will learn how to cope with it, I promise you.
It is good that you are crying, natures own way of healing and dealing with grief. It is also good that you have the strength to share your thoughts with others. Hang on in there.
I read your story and feel your pain, my partner of 14 years and father of our two beautiful daughters had an RTA in November, he has severe brain damage, he is still in hospital in a PVS, they have told me he will never return home to us again, and we should carry on life without him!! I visit him as much as I can, trying to hold down a job, family life and mortgage is not easy is it when your partner is so ill. I really feel for you and can totoally get how you are feeling, which is something I know not many people can say to you (it gets me very angry at the moment when someone says Oh I know how you must be feeling........... how can they until they have walked in our shoes for a week, day or even an hour) I do hope things get better for you, take some comfort in the fact at least you have your partner there to get climb into bed with at night...they say time is a great healer but at the moment I feel as you do like there is no end to it all. Sending you hugs and lots of hope xxx
Thanks millie67 - although it brought me to tears this was a much needed reminder what a blessing it is that our son is at home where we can hug and help him.
I pray that you and your girls will be able to support each other through this awful time.
Thank you davesdad, thats really kind, I am new to this site, so far it has given me lots of hope and also made me feel like I am not suffering on my own, brain injury is a terrible thing that thankfully it doesnt touch the lives of the vast amount of people out there, but in consquence when it touches you and your family you can feel very alone, Glad to read your son is making progress in his journey, x
Dorsetcharlie..... I was just thinking about this response to you when the message from millie67 (above) landed. I had to stop for a while and think over what she had said. Her message was a powerful and helpful reminder to me, and I am sure to you too, why we need to keep battling on to support our loved ones in any and every way that we can. We are fortunate that what we do can sometimes make a difference, that we are still on a journey and have not been taken into the seemingly hopeless place that millie67 has so sadly found herself in.
Even so the way you felt last night is completely understandable. I agree with millie67 about people around us saying they understand when they don't; but the great thing about this site is that we can be open about what we are feeling to people who really have "been there" themselves.
The accident happened to Jake but you have been injured too. Your feelings are beyond your control, don't be hard on yourself for them, you are coping in a much more intelligent way than the vast majority of people would be able to. Jake is benefiting from that.
While David was still in ICU a neuropsychologist said to me " the bad thing is that David's recovery will be very slow. But that also means that for a very long time he will tend to be a tiny bit better each month than he was the month before - you need to be thinking of this taking years not months." Though it was not what I wanted to hear it turned out to be very helpful because, in the difficult times even 3 or 4 years later, I still had hope that progress was going to continue - and it did.
We are now over 6 years along that path and David is noticeably better now than he was this time last year. He still has problems but the prickly, fragile, often distressed person he was for several years after his accident is long gone, or maybe I should say almost completely hidden.
The words of Startlight by Muse have been the theme tune to David's recovery: ".....our hopes and expectations, black holes and revelations" There have been really deep, dark black holes but to our amazement there have been huge positive revelations that have moved him forward far beyond what we ever expected him to achieve. I pray that this will be the case for Jake.
Keep up the blog, I look forward to reading about the "revelations" that coming months and years may bring but continue to share the black holes when you need to - in fact do whatever is needed to help your recovery at the same time as you help Jake with his.
Hi there I read this and can relate completely!,, it has been just over 2 years since I 'lost' the wonderful man I married to a severe brain injury and have been on the journey of 'recovery' with him since then. It's so hard to plan the rest of your life with someone and then be hit with such devastation and loss......especially when many do not understand just how hard it is for you. I will always stay by my husband and never leave him and will continue to support and love him....but I also have lost my career and the life I planned (and we planned together) and I miss that and him every waking moment....but you just get On with it be use you have to.
Try and make time for you too ok? It will make you stronger for him....and it's. long journey which I am sure you know. I also encourage you (in time) to try to share your feelings with him....I have started to share my feelings bit by bit and we have cried together but it was nice to be able to have that friendship back...even if he did not understand in the way he used to.
Keep in touch with this group.....it's a godsend for me.
This is the first post i have read or wrote and i know just how you feel , my husband was hit by a drunk driver just over a year ago. We had a fantastic life and something inside me always knew my life was too good-it was! Sometimes you think why us especially when you look at other couples. Normality is envied and the future plans you made are distant memories. I look at his face and he is still handsome and the love of my life, it's just things
are different now. Don't worry if you feel resentful-we are'nt saints -just human!. Maybe these things happen to us for a reason-who knows! I feel for you! The worries that it brings, the responsibilities, the nasty thoughts -we all know what it's like1 You are doing a fantastic job (one that you didnt apply for and never would!) and in your darkest moments you are not alone-we are all there thinking of others coping with this nightmare that we all got caught up with!
hope u feeling a bit bttr tdy,i didnt ave my laptop the other day wen i read your post on my phonei wanted to comment but cld not sign in gt lppy bk now, now im crying as my stpid brain wnt let me say wat i wnted to .but i know u always been there fr people on hereand nrmly sound vry strong,hope u ok tdy x
That is so beautiful. Jake is lucky to have you. I have a brain injury and I too have grieved for the life I once knew but now that that grief has passed I have a new life and it is so much better than my old one, I've never been happier. So know that better things are awaiting you and once this passes you will move on to them.
I’m going through what everyone here has gone through ( reading old posts of 6 years ago) . My husband is still very ill and in icu . Waiting to see if he pulls through. Week 8 . No real signs of emergence of consciousness, problems with bp, breathing and kidneys.
The emotional trauma to myself and my young child . The financial void , the daily 2 hour drive to hospital, the possible bleak future of not having him alive or never him being the same again to hear his laugh or him pick our child up and swing her up in the air . It brings tears down my face as I type this and the knotted pain in my stomach. Why us I wonder? We had so much planned. Taken away in minutes one night with a cardiac arrest and anoxic brain injury.
Not sure what the future holds for us . But I do hope that the authors of the previous posts found some kind of peace and happiness after the grief of last 6 years.
It would be great to hear from anyone who has gone through grief/ pain and are now in a slightly better place in themselves. Hugs and peace to you all .
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