Looking for advice : I had a TBI a few weeks ago... - Headway

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Looking for advice

Armymanbooks profile image
18 Replies

I had a TBI a few weeks ago, after a work related car accident. It resulted in a craniotomy and I was in an induced coma for a couple of days.

I'm slowly beginning to feel better but I just don't feel like myself. I'm tired all the time and I get angry over nothing.

Any support or advice would be most appreciated

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Armymanbooks profile image
Armymanbooks
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18 Replies
Jonty77 profile image
Jonty77

sorry to hear about your accident and welcome to the group. You will get loads of good advice and support.

Welcome also to the world of being a brain injury survivor. When I was first recovering I had no idea what to expect. I still feel tired all the time. I remember when I got home from hospital I would get angry at the radio for having poor reception and I was never really angry prior to that. I would say I am more irritable than angry now. You develop strategies. My life is very structured now to minimise surprises.

Anyway, you are going to be different to how you were before. You will make improvements but it’s very slow and gradual and doesn’t always go in a straight line. There are loads of good factsheets on the headway site and I recommend reading them. There is definitely one on fatigue.

Get plenty of rest, don’t do too much, be kind to yourself, do research, come on here and ask questions or have a moan. Be open with those close to you, explain how you feel and what you need.

I’ll tap out now and let others chip in.

Armymanbooks profile image
Armymanbooks in reply to Jonty77

Thanks Mate.

I just feel bad for my pregnant girlfriend, she gets the brunt of my moods. I try not too but sometimes I can't help it

Beachlovingkiwi profile image
Beachlovingkiwi

You have come to the right place for advice as we have all been there. It is very early days for you so the best thing you can do is rest. Schedule in a sleep - blacked out room with ear plugs if possible mid day. Then take 10 minute break breaks every hour or two - just lie on a bed with eyes closed and breathe. I know it sounds ridiculous but these two tips were my saviours in the beginning - made it so I could get through the day - well until 7pm anyway. Reduce screen time and avoid supermarkets / busy places too as these seem to overload the senses and hurt ya head. All the best - acceptance is key to relising things might be different for a while

BaronC profile image
BaronC

Three important words here for you to consider...

Time. Time. Time.

A few weeks is very much the beginning of your journey, it really is one minute past minute in your journey. I'm thirty years in and still learning. Controlling your new emotions is a very common TBI issue that we all have to come to terms with and if you ever do fully, you're a lucky man.

And you must remember that in many ways the people who car for you go through this change as much as you, almost more so. You don't see the subtle changes, they do.

Here's my take...

youtu.be/aaXwcijmZ1Q

Catx1978 profile image
Catx1978 in reply to BaronC

I'm alnost three years since my accident and I was shattered after chopping some veg. Just chopping some veg and I still can't believe how tired it made me

BaronC profile image
BaronC in reply to Catx1978

I get tired occasionally simply trying to recall something

Catx1978 profile image
Catx1978 in reply to BaronC

So do I, even taking for 10 mins than leave me tired as well

Teazymaid profile image
Teazymaid

hi and welcome to the group .without a doubt the best place I’ve got information and support from .. I’ve read all the replies and can’t say any more then what has been said .. it is slow and still is 3 1/2 years later with the brain injury .. for me I thought it was all about the body injury and fought like crazy to get as physical fit as I could . Both shoulder operations done , doing my version of yoga / ti chi ( folding on the the wall🤪) and doing body pump when my arm was in a sling ( with no weights😁)now I’ve started to do more has shown up how different I really am , concentrating, short term memory, anger , still weakness in legs … etc .. this isn’t a moan it’s just life now and yeah I’m 57 but was fit heathy and not very much bothered me … now I’m different ( to long to go into ,, but my advice is do t give up , get gel every step of the way , ask straight away at your DRs as waiting list are long or go private , get counselling if you need it .. me and my husband together and just down 6 months and it has helped us so much , Read the Chimp Paradox ( amazing book for everyone not for head injuries survivors) talk to your family and friends about everything ..keep them updated on how you actually are feeling .. it helps when others know as you may look normal ( the old you ) but you may feel very different . I wish I could write more but you would go to sleep listening 😂 keep chatting on here as there are lots of people who helped me and I’m sure will help you .. looking forward to hearing about the baby and remember you will get better as you are very early in the recovery journey .. best wishes Sue 😁

Armymanbooks profile image
Armymanbooks in reply to Teazymaid

Cheers Sue,

My girlfriend has that book, she has ADHD as well as anxiety and depression, I might borrow it.

I've been offered counselling through work and I'm on a waiting list. I'm struggling processing the accident and when I try to think about it I get a headache and then I get moody.

My girlfriend is pregnant and I get frustrated at her, we both know I can't help it, but I'm sure she's sick of it. I want to be the supportive partner for her and an amazing Dad for our daughter when she arrives.

Teazymaid profile image
Teazymaid in reply to Armymanbooks

Yeah read the book it is really good as I’m sure your girlfriend has said . I don’t have any memory of my accident and although I was unconscious for a few minutes I have no memory at all of my week in hospital .. I didn’t need a op as my bleeds started the reduce the week .. I would do anything to remember he accident a I felt like I woke up in someone else’s body .. 3+ years on and still no memory .( post traumatic amnesia it is ) basically the brain in working hard to mend its self and memory is not needed to survive .. shame as I would still love to know 😁 definitively get counselling and also as a couple .. there are some good counselling aout there but if the one you get isn’t right for you just ask to see someone else as we all work differently with different people .. I know my anger has been very bad and reading the book which I had read before and also my husband listening to it on the way to work has had a massive impact ( positive) and couple counselling .. try to do the book and also your girlfriend read it again as it has helped to have it fresher in my mind . Don’t be surprised if you have to read it several times until it sinks in not necessarily the whole book but little snippets as I have to but my short term memory is crap 😂 oh and laughing at the stupid things I say has provided entertainment for my family and friends 😂😂 sue x

Armymanbooks profile image
Armymanbooks in reply to Teazymaid

I can remember just before the accident and a few bits straight after, but the next thing I remember I was in hospital. My colleague who was also involved but he didn't have the same injuries as me, has filled in the blanks.

I was in hospital for about 2 weeks and remember most of that. I've tried to recall the bits I can't remember but I get really bad headaches.

I'll ask her about the book when she gets back from shopping

Teazymaid profile image
Teazymaid in reply to Armymanbooks

At least your friend can fill in the blanks .. but for me it was one of the covid lock down and no one could visit not even on discharge form hospital . I was pushed in a wheel chair to my husbands car by a porter with very little info apart from fracture clinic appointments about collar bone and nurses coming daily to adjust neck brace which I repeatedly took off as it hurt and my neck being broken I had no idea about thought they kept telling me 😂 I didn’t remember .. others have said about the bad headache on here but I was in pain every where so I think the headache got lost in that .Sue 😁

Armymanbooks profile image
Armymanbooks in reply to Teazymaid

I've also broken my collar bone, but my neck wasn't broken. I was at the fracture clinic on Wednesday and I was told it was healing well and I can have periods without the sling.

Teazymaid profile image
Teazymaid in reply to Armymanbooks

Mine stayed in half for 9months as they wouldn’t give me a general anaesthetic because of bleeds on the brain so mine is now screwed together and then last year I had bone an ligament removed from the other shoulder as that got damaged as well .. .. it’s amazing how far you can come with time .. just for me the wonky brain which you get used to and badly healed rupture hamstring That is now causing problems with leg weakness … I actually find writing this quite funny now .. thank god for time .. you will get there 😁👍sue x

TreesMTBI profile image
TreesMTBI

Hi and welcome to this most exclusive club that none of us really want to be in! But as others have said, this is a great place to come for moral support, advice, different perspectives or to have a bit of a rant to those who really do understand.

Also, congrats on the pending birth of your baby. Exciting times!

I saw you’re waiting for counselling via your employer. Just to say, also keep NHS Talking Therapies in mind perhaps for later down the line if you need it. It’s self-referral, your GP practice can direct you if you can’t find it yourself. It’s been a godsend service for me personally as I await specialist appointments with neuropsychology.

I would also advise speaking to Headway the brain injury charity who run this forum, if you haven’t already. They are a good listening ear as well as offering lots of practical advice and information both for you and your girlfriend, to help understand the situation you both find yourselves in.

0808 800 2244 or helpline@headway.org.uk

As others have said, it’s early days and it’s critical that you give your brain LOTS of rest from everything - block off your senses as much as possible and if you’re up for it, try some sort of meditation to help slow your thoughts down as well.

Your neural pathways in your brain that fire off all the messages around your body telling it what it needs to do, will all be in disarray, and your brain will be working out how to get around any ‘roadblocks’ following the injury, so rest is important so that these new pathways can be built. And so that you don’t become overwhelmed and fatigued.

Right. I’ll stop there as could write you a whole essay here 😂

But wishing you the very best healthy wishes in your recovery.

Take care

Tx

Armymanbooks profile image
Armymanbooks in reply to TreesMTBI

My girlfriend is into meditation so I will ask her to point me into the right direction for help there, I've not called the headway helpline yet, but I've been on the website and got some information.

Thanks 👍🏻

philbou profile image
philbou

hi and welcome too

Id be interested to know if you could remember or sense anything while you were in a coma

If you don't mind me asking

My wife came out and is now non verbal

Its was something that intrigued me if she could hear or feel me at the icu bedside

Armymanbooks profile image
Armymanbooks in reply to philbou

I don't remember much, although I do remember seeing my twin sister, she died 6 years ago and I'm certain she visited me, but this couldn't have happened.

I also have a vague memory of my girlfriend telling me she's told someone the name we've chosen for our daughter because we haven't told anyone. I mentioned it the other day and she had told the hospital chaplain then told me when I was in the coma.

I'm sorry about your wife

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