In April my Concussion was something I thought was temporary. If I pushed and worked at the recovery, like any past injuries that I have rehabilitated from, then I would be back to normal in a few months......
I thought that after a couple of months I would be able to return to work at a reduced intensity and continue my recovery, accepting that it might take a few more months to fully mend. The return to work was interspersed with weeks of annual leave and I thought I was doing ok. Work, rest, work, rest....
Then, after a few weeks of continuous work, no more leave left, I gradually deteriorated and my life changed. Firstly I stopped being able to do any activities after work at all, then I found I couldn't even speak to my partner after work and I just went to bed after dinner. Then the weekends were not enough to recover for the next week.
Then I had a "breakdown" a "crash" where I had pushed through my working day until I made it through the front door and I started to sob. I didn't stop for a a few days. I just couldn't function.
So I found myself at 5 months post injury and crying on the phone to my GP who signed me off work.
That was a couple of months ago now. It's taken me this long to reach a point where I can even consider posting.
I have learned the things that tire me. I am aware of my limitations and I have to be very careful about what I plan in each day, who I speak to and what I do.
I can manage a dog walk. The outside is such a tonic. I do a yoga session a week now, and the peace that brings me is the one activity that manages to boost me. I feel such peace after Yoga, so in tune with the Universe that I feel emotional.
I cannot ever imagine getting back to the person who used to cycle 300km a week, work at 3 high intensity jobs and have an active social life and do DIY projects.
I am becoming ok with that now, slowly coming to terms. But I have been grieving for the past couple of months about my loss of self, my loss of energy, my loss of drive. I would find myself just crying at random times during the day. Especially when I talked about it but also whilst doing other things, or just sitting, or out walking the dog.
It's 7 months now and I still have to write a post like this in stages, with breaks. Speaking to people exhausts me, thinking is slow and painful, memories are unreliable, decisions are a struggle, surrounding distractions are so intense it's unimaginable to be productive in any busy place.
I am so tired of trying to swim against this rip tide. The harder I try, the worse I feel; so I have started to accept all of this. When I do so, I feel a rush of peace and relief.
I am still the same person and have the same core values and still enjoy so much of the simple things around me that I wonder what I am putting up the fight for?
The real energy cost of making this decision is the effort involved in educating those around me and endlessly explaining why.
Does anyone else feel this way? is this a typical pattern of injury and acceptance?
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WonderingWanda
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Hi WW,The abi I got happened roughly 15 years ago.
The process you describe is very familiar, only in my case there was no attempt to return to work.
I still notice things that would have been and are no longer. It is still difficult sometimes. The difference is I am a bit better at .. redirecting ... my thoughts.
Some things have been hug impacts, and there is definitely a greiving process.
The loss/grief/move on cycle isn't once and done, it's something you keep living with - because some of the impact is ongoing and will be in your face time to time.
You are still fresh, believe it or not. A lot of healing happens fast in the first 3 or 4 years - it still happens after that , just a lot slower.
So yes, what you are going through is what a lot us, if not most of us, go through.
yep I can relate with all of that - my first tbi was 5 years ago and the second 4 years ago and the past two years has seen me return to work only to burn out as you mentioned above by about September/october - I’m currently not working and won’t until next year now - I’m lucky my husband can support us and is so supportive! I have accepted things a few times at different stages and I’m only now accepting that I can’t return to my work - kindergarten teaching - for anything more than 12 hours a week. So hard for me but otherwise my family suffer as I can’t function much in the afternoon evenings - I was giving the best of me to work for 4/5 hours a day then have nothing left . Anyway you are not alone and are very early on in your recovery - yoga helps me heaps too there is a site I go to that is specially for brain injury it’s called Locke your brain. They have mediation on it too. Also lots info etc. anyway reach out if you would like to talk - zoom even?? Debbie
Hi there, congratulations on starting to accept. It took me years of wasted time and effort trying to return to the old me and failing.
Yes you need to grieve for the old you and its passing. That is a good thing, for then you can concentrate your efforts on the the new you.
Yes you will have limitations but accepting this qi help you push those limits.
Knowing when to push and when not to is a balancing act, but you will get there.
Remember this new you is still a valued person, and has a lot to offer. If you can return to work fine , if you xant then that's fine to. You will find your place again in the world.
One bit of advice. Don't shut people out, it's so easy to do this when concentrating on recovering.
Accept help and enjoy being here. Having a bi is not a sentence, it's just a different way of life.
yES!! Spent a month in a coma after tbi, 6 months in various hospitals. Saw DWP doctor who asked me 4 questions, stopped my benefits. 6 months later appeal awarded me 13 points, only needed 6 for long term incapacity!! Look normal, but brain in still in recovery. 20years on lots has changed, finally came/try to accept the new me?! Spent this time remoulding the new me. She’d the worse bits & polish the better qualities? Sound similar? New life is a struggle for sure!! Think am a nicer person just trying to find a purpose? Tbi less of a problem, good thing is it means my awareness restricts my ability to feel anxiety!! Go to put kettle on for coffee, do something else?!! Sound similar? Main god send in learnt to SMILE to spite it!! Keep safe n know y ain’t alone!!!
Acceptance is giving up whereas acknowledgement is coming to a rational conclusion that you have changed.
At seven months post injury you are moving into the third chronic phase of recovery. You have described the first two phases perfectly, the acute phase of neural cell death and the subacute phase of cellular repair.
The chronic phase means your brain has healed physiologically but it needs functional reconstruction.
The brain is plastic and will adapt and reconstruct through the neuroplastic process.
It means that your brain will adapt to whatever you do in life.
Get educated, get inspired and become the person you want to become, the new you.
Read:
'The ghost in my brain' by Clarke Elliott
'My stroke of insight' by Jill Bolte Taylor
'Mindfulness and stroke' by Jody Mardula
'The woman who changed her brain' by Barbara Arrowsmith-Young
The message is to never, ever, ever give up; keep fighting but fight clever.
Spoiler alert for the books.
Jody accepted her situation and never recovered.
The other authors acknowledged their situations and found a way to recover.
Oh, yes, every word you say is what I've been going through for the past year and a half. And after writing that first sentence I've had to flop back on the sofa for a minute with my eyes closed for a rest.
It sounds like you're doing all the right things, like finding yoga. I used to be a serious cyclist too, but now it's just one or two short rides a week on quiet country roads so I can look at the gorgeous nature. I've accepted that I'll never be able to go back to my old career, I just don't have the brain for it! My plans for a new career are being wound back by the day, so at the moment it's just volunteer work in a nature reserve for one day a week. I might be able to build on that later, but for now, one day at a time.
The phrases you use make sense to me. Acceptance of your new self. Allowing yourself to grieve what you've lost, then moving on to new waters. Learning to adapt, planning your time to save energy for the important things. I think we all start with an expectation of recovery of our 'old life', and it really hurts when we realise that isn't going to happen. But I'm finding some fun new aspects of my new self. And the core values of my old self are definitely still there.
Good luck with the journey, looking forward to plodding along beside you.
Hello, you explain the situation of coming to terms with a brain injury well. I have been through the same grieving process. Coming to terms with this big change on how to live your life now is exhausting and stressful and very emotional. We can easily see ourselves as lacking in many areas, compared to our previous high functioning self. This hit me hard, realising that I had to give up my career, my social life changed and even friends. You are still very much in early recovery. For me I made most progress in year 5 and 6 , I am 7 years on from emergency surgery, after a seizure led to findings of a massive brain tumour. I didn’t go back to work, I struggled to speak for 4 years, sensory overload and information processing are still my main problems and these very much bring me into a crash and fatigue situation. I’m still learning to juggle all this. I would say well done, for coming to this realisation so early on, it’s took me years and years. Try not to compare yourself so much to others or yourself before your injury, although there’s limitations now, you still have endless opportunities. Life for me is so much simpler, I enjoy outdoors, being in the garden, soothes my soul. I have distanced myself from some people, I realised they drained the life from me and are far too complicated to spend my limited energy on, I did battle with this a lot. Eventually I put boundaries in place that worked for me and my health, they couldn’t live with these, took offence and the distance became final. I realised that they couldn’t do this with me, so I’m glad of the less complications they bring. I wish you well in your recovery x
Hi WW I really feel for you - 7 months in is a very confusing place to be. It does sound like you had burnout, which my neuropsychiatrist said was a very real possibility. My maths training tells me that to solve a problem, you have to accept it is your problem - so acceptance in that sense is a positive thing. So the thing now is to problem solve yourself - how much rest do you need, and how often? What activities drain you, and how long can you do them for without adding to your fatigue or other symptoms? How many days do you need to rest up before and after a family occasion? Keeping a 'diary' and checking in on yourself three times a day and rating a) the severity of your symptoms and b) what activities you've been doing, can give you some useful insights.
The neuropsychiatrist I saw said that if you didn't work through these steps of going back to your own personal baseline of activity, and very gradually building up, that it would be very hard to achieve real improvement.
My concussion specialist physio ( who also coached me in managing my fatigue) said when I complained that I could only read for ten minutes at a time, to only try to read for five minutes at a time, and build up gradually. The neuropsychologist suggested re-reading books I already had could be helpful (and it really was). These low benchmarks may seem awful to you compared to your old self, but it is a way to find out what you can do now, and then to gradually build up.
It's sometimes the small things that rankle most. Pre MTBI I watched MasterChef and Strictly to wind down. Post MTBI I couldn't watch them for more than about five minutes, if that, so it took me all week to watch an episode - but year on year that's improved, and now I can watch an episode in one evening, so long as I can pause / fast forward it occasionally. It gives me a good sense of how far I've come though.
What sort of help and support have you had since your accident? (Don't forget that the Headway helpline are really good to talk to, and can give you solid advice too - they're open office hours)
Hi. I’ve just sat reading your words between clients at work and crying. I could have written that all myself, it’s so familiar. I had a TBI nearly two years ago, in December and feel like you have just described every day. It’s exhausting to keep on pushing forward. You are amazing o have realised and accepted that things are different and trying to go with it. Acceptance has been the hardest thing for me. You are an inspiration and I really hope that you find your peace with your new normal. Lots of love x
A lot of what you've written I recognise from personal experience.
I thought once my broken ribs healed I'd be back at work. I'm still doing daily physio for my shoulder and back, who knew it would take so long to heal? I tried to get back to work quickly and ended up with PTSD and anxiety. Then I started to notice changes in my personality and my ability to understand the simplest of forms or instructions and I couldn't follow what people were saying. I had to ask them to repeat it as if to a child.
When I became aware I didn't recognise friends, or places, lost pieces of my day, forgot what I was doing in the time it took me to think of it and then turn to do it, gave people wrong advice, I became very depressed. I only just started to get my head around the changes in May this year, 12 months after the accident.
Then my sister died suddenly and I relapsed and became suicidal.
It's been a long haul since then, I'm still trying to come to terms with the new me and my new life.
I only joined this group recently, so talking with people who understand is still new for me, but it helps so much.
We have to think of this as a new challenge. Something to overcome. We’ll get there.
I get that totally. This is something I have struggled with.
It's been suggested to me that I have bereavement counselling for it. I think I'm going to take up the offer. The old me is dead & I have to accept it.
The new you is just version 2.0 and is still you at its core. I agree that it’s a grieving process totally but you have to let yourself grieve. Then move forward. Good luck with it. Whether you have a counsellor or use a good friend to talk it through I think it is important to examine the feelings and emotions and acknowledge them for what they are.
I am at month 5 after a serious cycling accident in June and I recognise what you are saying, which is worrying. I’m perhaps coming to the bit before the big crash and acceptance bit.
Everyone is different so I wouldn’t follow my timeline if I were you. Is it because you recognise that you are doing too much and finding it increasingly difficult to do things?
Yes exactly that. Like you, I kind of just thought I’d push through and recover in a few months tops. I’ve recovered to about 70 or 80% I think, but it’s surprising how much I actually need the missing 20 to 30%. It just means work starts to overtake me, stress builds, fatigue and light headedness ramps up, and it all starts to feel a bit overwhelming. I’ve definitely felt, particularly over the last 2 weeks, that a crash is on the way. I am someone to push too hard. Physically I’m fine, I even ran a half marathon at week 18 post accident, albeit a lot slower than I would have before my accident, and I think people look at me and think there’s nothing wrong, but I know within myself that I’m a long way from back to normal. It’s been good to find this message board to read other’s stories and understand that it’s all part of a normal response to a bad injury and it’s not all just in my head. I just want my old self back and to not feel wiped out and stunned all the time.
hi, such a lot of reflection and very useful description in your post. You describe what many of us go through but reading it here is very sobering. Brain injury requires a journey and we all have different start and stop times, some of us do not get to reflect as deeply as others and for some the reflection is a soul-searching and tormenting journey. Some feel the hurt and pain without being able to think through the stages, then desperation and hopeless can hit. We all have our challenges don't we. Your post just made me think that little thought.
Your own journey has been full-on since your injury. Think about it, are there other times in life when such change and work is required? There is one example I can think of but as our experience involves the brain and physical disabilities for some, then it is certainly complex. It is a massive amount of energy that is required to work thought this, added to that the emotional response and the sense of self being obliterated and slowly rebuilt.
You have been staring in the face of the biggest challenge of your life. You have worked through it by hook or by crook. I say that because our journeys are not structured (unless we are under the watchful eye of rehab team, but even then you are left with your own throughts when they arent there). Usually we tackle the journey in the only way we know and every day we wake up we don't know what is to come. Thoughts ebb and flow for many with memory problems which makes this journey even harder.
I have read that you have tackled some very hard things in your journey. The fact you can write on here now is poignant. You appear to be searching for the next stages in your journey. Keep writing on here because someone will always be able to connect and might help your thoughts.
The issue of informing others is something of a mine field isn't it. In my case I have done very little so have not had need to explain to others often, yet every single interaction I have had with people I still have to explain something. In your case you seemed to have managed to get back to a fair bit of your old life albeit waveringly, and that will further confuse people. They literally see what is infront of them and what is hard for you is invisible to them. They dont know the before or the after or how you feel inside. I know this is what cruches a lot of people on here. To feel misunderstood is not helpful. And the strain on our energy levels in having to explain to others is hard-going. If you felt very brave you could wear a Headway card lanyard that explains your symptoms and anything relevant... It would provide something visible as well as being informative and eventually those who know you will learn from seeing it and new comers will learn too...
Hi WW - yes, this is the journey. You are far from alone, as you see.
May be worth sharing an anecdote. I saw a consultant once, a young woman, who spoke to me as if I did have a brain, which amongst medics is not always guaranteed. She said that the best way to explain it to yourself, in terms that your processing powers can take in just now (and to your family, if necessary) is to over-simplify it. Do you cook? I said yes, I do. She smiled.
Think about a firm jelly - quite a firm aspic set. And there is a little bit of space around it - quite how you achieved that, I don't know. The jelly is sitting in a thick glass jar. Someone now threw the glass jar on the floor, and the jelly rattled around the little space available, and then settled back. You could't see what was wrong with it, but you could see that bits of it had been shaken, and had kind of moved around, without breaking up entirely.
The jelly is your brain - and the skull is that glass jar. You can't see exactly what went wrong, but something is not quite right, and you'd hurt the jelly even more, if you tried to poke around in it.
But it is a decision making and energy allocating organ, this brain. It will let you know when it is short of resources, and you will have to make sure that you do nothing, while it builds up again. Eat well, make yourself comfortable, and slowly, very very slowly, give it increasingly more to do - maybe once every 3 months, in small increments. You are teaching it to return the old you to this new version of you. You are not 'doing nothing'. This (what you are going through) is work. Record what you do in a day. (I have a document called '1-day-log' in which I write things like - 'cleaned the compost bin', or this morning 'put out the rubbish' - or simply - note the time and then remind myself that I have taken my meds.)
Then once in a while, compare what you can do now, with what you did three months ago. You will see improvement, I am sure. I have. Small improvements.
Its taken me a while to write this - I am crashing right now - done too much, and mismanaged my energies. This tells you that I get it wrong some of the time, and misjudge what I can get away with. That too is part of the learning curve.
Love the chap who says SMILE - actually there is medical evidence that putting the mouth in that position of lifting up causes us to release oxytocin - the feel-good hormone. Have tried it, and somewhat surprisingly it does work - even if you are just doing it, and there is nothing amusing going on.
I have been cheered on by the other people on this wonderful platform.
Joining them in cheering you on today.
No, you are not alone at all. You are walking the same walk.
thanks to everyone who has commented on this thread it means such a lot to know you are not alone.
I feel so powerless to help my partner deal with this enormous change to our lives as well. Highlighted today after I had a Psychology visit and offloaded. Families go through the same upheaval but get even less help. I’m the only person close enough to talk it through with but I am the subject that needs discussing! Does anyone have any experience of Headway family counselling?
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Any ideas on helping dad accept help at home?
Another stage in the process?
Accepting you have TBI is the most difficult thing to do.
