Oh HealthUnlocked. Before it happened, 13 years ago, I was driven, passionate, focussed and interested in my areas of focus. Those areas were in brain research (yes, the irony) and painting.
Now things are very different. I don't know where I can concentrate on now - research career lost, not sure where to turn.
My husband just caught me with my hand inside a cereal packet eating. Not because I'm hungry but a yearning for sugar. I've doubled in weight since my TBI. I've been trying to diet for the whole time since my injury and failed. Apparently some of the pills I'm on can cause huge weight gains so I'm slowly decreasing the dose I'm on. So I'm more sore.
In truth I feel very despondent. It's as though I'm eating in order to destroy the remnants of hope I have for the future. But I can't maintain the discipline to control myself. When I feel down on a normal day, I eat tasty food which makes me feel a little better while I eat it. But it's not constructive, far from it.
How did I end up this way? How did my life suddenly change in an instant, to someone whose self esteem is rock bottom. If only I could muster the drive and control that I had before I fell down those stairs on 11th September 2008...
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saville75
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Hi. Have you had any support or help with dealing with the psychological impact of what happened? After my brain injury I struggled terribly with the changes, having become disabled and unable to work. I experienced suicidal thoughts and found help through a suicide respite centre. It then took several years and my pushing for a referral to a neuropsychologist before I found out that I had Post Traumatic Stress Disorder from what had happened to me. I have since had EMDR therapy and it has transformed everything for me.
Thanks Marnie22. Yes I've managed to get help from a few people but at the moment I see a counsellor who specialises in brain injury. She's very good - I forwarded this message to her last night and she'd replied by this morning - she's good. But getting used to the new me...it's well, v hard x
It's very hard. I am still discovering who I am almost six years after my injury. I find the changes to my personality to be very hard to adjust to. Take care. ⚘
Oh L, the changes are really hard to take, some days are worse than others - and you know we all get it here.
It's hard enough dieting without a brain injury - slip ups are normal, and it's ok to say today didn't work, and go back on the wagon tomorrow. But it's pretty easy to see why it's harder after a BI ( and I am saying this after a diet day that somehow involved two chocolate brownies and a bacon roll - via that other bugbear - social eating.. ) But today I'm just going to cherish the memories and move on - guilt just makes things worse.
Eating for me has I think always had an emotional element - and I've got less emotional regulation now.
Impulse control is also rubbish now, and decision-making, and planning. None of which help weight loss. Plus if I'm more than usually tired, all the above come into play and make it harder to sort out healthier choices at meal times. Then add insomnia and peanut butter sandwiches in the middle of the night and it's a tricky picture all round. Does any of this ring a bell with you? I wonder if anyone else in here has found ways to handle this?
Please give yourself credit for all you have achieved in your life since your TBI.
The other thing is, I think the growing research on the microbiome (Tim Spector and others) is saying that the long established calorie and exercise model is not accurate and even goes as far to say that regular diets don't work long term - based on his extensive twin research - basically it's not about willpower ( I do rather like the image of the bad gut bacteria requesting the brain for more of what it needs to monopolise the gut - cue an ugly mobster bacteria ringing up the brain for a takeout, or a tub of ice-cream....)
I'm trying to go to bed hungry as I write, but suspect it's still going to involve some peanut butter..
You're a great person L and I know it's hard to accept the changes that happen after a BI, and that your post isn't exactly about dieting, but that you are grieving. You will get there though x
P.S. I'm re-reading this in the cold light of day - and I'm thinking, that was a daft thing to say - do any of us truly stop grieving for 'the person we were'?
I think the job now is perhaps more about accepting and loving the person we are now, odd BI foibles and all. Which is probably what the job of maturity is for everyone, except it is fair to say that, after a BI, we've got quite a bit more accepting to do. I know we can always have that wretched accusation of looking at the past through rose tinted spectacles - and there's always a risk of that creeping in ( for anyone, not just us) but we can't get away from the knowledge we know we have changed, and by the nature of the thing, it was a shocking, one-off, and sudden event, with no warning, and no volition on our part - so PTSD is in the mix as well, as Marnie said. (Why is it when our memories are shot to bits, we can still remember what we used to be like?)
That said, if we know where we have problems like instigating actions, and stopping them once we've started - Is it then possible to develop workarounds for the lack of impulse control, planning, decision-making, and for handling fatigue, in terms of what we want to achieve? This isn't entirely rhetorical, I also need to lose weight - blood pressure, cholesterol and pre diabetes are all highly questionable (and I got a great annuity rate recently when I sorted out my pension, which means the underwriters agreed with me .. and yes, dealing with the decision was a total nightmare and multiple headache scenario) and I really need to paint, dejunk and clean my flat - tasks which feel more unattainable to me than climbing Mount Everest (bearing in mind I've always been terrified of heights....)
PG, I actually don't remember who I was pre-BI, so funnily enough I don't grieve her. Okay, at the beginning it felt like a bereavement but with the passage of time, I've not stopped to consider anything but the "here and now". I don't live in the past and I don't contemplate the future. I have no inner voice either! As a friend once said...you have found nirvana without trying. 😀
Oh god yes on all counts. Grieving. That word sounded almost too dramatic at first when it was suggested to me, but I'm coming round to it now. I'm grieving for the person I was and the irony of it is that the person I used to be would have thrown it right back in my face. I'd have told the new me that I wasn't worth grieving for. That what I've achieved is nothing, not a big thing. I'd have given the new me a gid mouthful full of expletives. That's because I didn't realise what I'd achieved. I never did. I only realised once it was taken away in an instant with no warning whatsoever. So I need to learn to like and appreciate the new me. I feel I need to mature very quickly and try to catch up somehow so I can match the people around me. I'm still getting to know myself and learning all the time who this new person is. Ach I'm sorry, I'm rambling. But thank you for your replies X
OMG Painting-girl, you've got me, through and through. And I mean that in a good way. Less emotional regulation. That's exactly the phrase I've been looking for - I've just read that out to my husband and he seems to agree. Tired, yes. Tubs of ice cream, yes (Ben and Jerrys Half Baked is my first choice and I can't recommend it enough!). Insomnia, no - I have a 4 year old lad who bounces off the walls and ceiling. This prevents insomnia and promotes passing out while watching tv at night. I don't give myself credit. At all. For anything. I've realised that this is a big problem as I should at least pat myself on the back for getting where I've got to. I don't know how to change that...it's a wait and see thing I'm guessing. And hoping.
I think some of the others have touched on what an effort it is for us to do even basic ordinary stuff day to day - so apart from the fact that you are clearly a wonderful artist and mother, actually every day is an achievement, doing what everyone else just takes for granted...
I have slipped away from doing this lately, and must start again, but each evening I wrote down whatever had been good or successful on that day (not what I hadn't, or what didn't work - it's important that it is just the good things). But it is interesting to look back and see what went right, and what gave me pleasure on that particular day - it puts some shape and meaning on my life, and helps when I can't remember why I haven't done something - it usually turns out that I was doing something else meaningful instead, and I'd just forgotten ...
So today I gardened, and planted winter flowering plants, and bulbs for spring. I also set a timer every 30 minutes to take breaks, and then actually had enough stamina left to cook and to wash up after supper - which hasn't happened for ages lately - so that's all going in my happy diary tonight.
(So a four year old is a cure for insomnia... excellent! 😊 Think that might be a tad extreme a solution for me! x)
I had a bit of a breakthrough I thought on my painting a couple of weeks ago what do you think? Only seems to happen on vegetables though! 😆
Woah I love your pumpkins painting. Variations on a colour which I love. I remember doing a single little squash I think, and it's the first time I experimented with using 3D paint to make bits stick out - I'll just see if I can dig it out and put it on here...
Glad you like mine, though I'm just a dabbler..... my sister walked in with a bag of little pumpkins for me and I couldn't not paint them. I'd make soup now, except they feel a bit like pets now ...
But can I also say I like the happy diary you mention. A few years ago I found a whole bunch of things from when I was in hospital with my TBI. I had it all framed and I was going to use it as a reminder about how far I've come. Yet I still haven't put it up on the wall yet. I need to sort that out big time...
Reminds me a little of that book 'Mindfulness and Stroke - living with brain injury' by Jodie Mardula and Caroline Vaughan - it's Mardula's diary after her bi - complete with all her drawings, with a commentary by Frances Vaughan her neuropsychologist, lots of insight into the different effects of brain injury. The mindfulness thing was Mardula's training - she had a post at Bangor at the time
Someone suggested it here - the diary is good, and the second half is a great breakdown by the neuropsychologist on the different effects of a BI and useful strategies to manage them. Very user friendly book.
I also fell down the stairs and had a brain haemorrhage, mine was in 2016 and the person I used to be was gone and no matter how hard I tried he was never coming back and I still struggle with that now but although I have no words of wisdom for you I just want you to know that there is a light at the end of the tunnel and believe in yourself and don't ever look back because you are not going that way
Hello Saville75, your comments really resonate with me and I am certain with everybody who has had a brain injury and has also somewhat lost parts of their former self. Never before the accident did I feel so sedated about my future plans, my ambition has taken a nose dive over the past 20 years post accident. However, I have to add that through this tangled mess of what passes for my life these days there are still regularly positives, they just aren't exactly the same as the positives in my life preinjury. In addition to that we all have to be proud of ourselves for the developments we have made, the small victories which in truth, with me anyway, weren't small victories at all, but epic giants. I have got better at remembering people's names, allow me to touch wood to cover myself after exclaiming that lest it be taken from me. That minor victory has taken over 20 years and a lot of trial and error using ridiculous methodology to try and make such an apparently every day thing easier for myself but it is now better. Not perfect, but better. Any upward scale is an achievement as far as I am concerned with certain issues. So please pat yourself on the back for your accomplishments using the any improvement is a step in the right direction no matter how small it may appear to everyone else. We are the judges of how big or small an issue is for us - I used to belittle my achievements thinking there was nothing to them despite the effort it had taken to get them back. Now I see it exactly the way it is in my mind - a small thing took lots of effort to do - but I did it! Well done!
Oh I love what you wrote there Pedal2. It resonates completely with me and I recognise so much of what you've said. The pat ourselves on the back thing. I need to learn how to do that. Small things are much bigger and harder to me now. My character needs to change as I've always demanded the absolute best from myself (pre-injury that is) so I'm having to change that attitude in order to give myself a bl***y break! Thanks for writing X
I’m genuinely sorry to hear about what has happened to you, you are still an inspiration and in possession of those qualities.
I personally have come to realisation that I need to take a step back because of what has happened to me. I now acknowledge that I’m disabled permanently and cannot do even 5% of what I used to do. I was a high achiever and highly educated; people used to call me a scientist which I find very strange at the moment…I can now barley read a paragraph…let alone being given so many titles. My brain is in a constant state of confusion and basically I feel both dead and alive at the same time.
I’d like to say more but I struggle writing another paragraph. A gentle hug from a fellow sufferer 🤗🤗
How long after the bi did you notice changes in yourself as a person?I had my accident back in July, was in a coma on life support from weeks and am now going through rehab getting my mobility back and speech. Thr injury affected my swallowing so I struggle with eating and has left my left vocal cord paralysed so I struggle to speech. I've not started to get emotional and can cry at the drop of a hat. I don't remember the accident at all, I was a cyclist hit by a car but I remember what I was like before it. I don't think I've processed what actually happened
OK I can give you my version of what happened to me. I fell down some stairs 11th Sept 2008. I immediately had front half of my skull removed as they found out I had a haemorrhage. I was in a coma and artificial respiration for 3 weeks and hospital for 3 months. When I woke from my coma I didn't (couldn't? Not sure) speak until my husband's birthday 27th Oct. My mum who flew along with my dad to my bedside - TBI happened when I was working in Melbourne - taught me to read, write, walk etc...they stayed for 5 months until I was up and around. Now the emotional side of things. Now it's 13 years back, I feel as though I didn't emotionally realise what had happened to me for literally years. Put it this way, I was trying to apply for jobs at the same level as I had been at as late as 2011. The penny clearly hadn't dropped. But the emotional realisation that I'm "different" took even longer. I can't remember the injury happening and I struggle to remember what I used to be like. But I know I'm different now. It's a horrible feeling but I'm slowly getting used to it. Now I know rom experience that this may not have any effect on you but from where I'm sitting, try and relax. The medical side of things may well improve. The emotional side will probably take longer. But there's time. I hope you're able to carry on with your rehab and you're able to make small steps. I was in such a rush to get better I didn't appreciate the small steps. But they count, every one of them. Thanks for writing, it means a lot from one TBI survivor to another X
I had the side of my skull removed due to my brain swelling, I was cycling home from work when I was hot my a car. I broke three ribs, both cleviclsd and several areas of my skull. I was taken to London by Air ambulance where I was on a coma on life support for 6 weeks. When I came round, they kept mentioning trauma and I was like 'how do I have trauma? I haven't had an accident" that's when my husband told me what had happened. I don't even remember cycling to the road whee thr accident happened. I had a trachy in my front so could speak, couldn't eat and was bed bound for about 3 weeks and rehab git me moving again. I think I was focusing so much on my rehab that I didn't process anything and I am now. I've only seen my little boy once since the accident as its difficult for him to come in due to the pandemic.
I can relate to so much of what you're saying. I'm the same as you - it's brilliant to talk to people on this forum who understand. They get it. Thank goodness. X
That's I came on here. So many patients in this hospital don't talk because they can't and I just need to speak to people who are understand. They've estimated my discharge date as thr 30th December and I'm.terrified of going home and leaving the 24/7 safety of the hospital bubble
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Shame, Regret and Rehabilitation ! :o
This is just so painful
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