I had a TBI in December 2021. It’s been a struggle to get myself back to some sort of normal. I’ve spent the last year and a bit struggling with the things I’ve been left with since the injury but mainly telling everyone I’m fine, stop fussing, and now working hard to be normal to everyone around me. The problem is I find everything such hard work. I’m happiest on my own when there is nothing for my brain to have to deal with.
I’m working 4.5 days a week and basically worn out so don’t do anything else. That’s fine as I love my job, but it’s hard pretending all the time. I’ve still got a constant headache, numbness and pins and needles in my left side and get confused. Also I’ve noticed that memories from before the accident are fine but since then, things don’t seem to stick in my head anymore.
To everyone else around me, even my husband , I seem normal, but I’m so far from who I used to be. I’ve accepted that things have changed, that I have to do things at a slower pace now, but sometimes I feel so alone with this and so lonely. I wish I had someone I could talk to who understood. I don’t want to bore anyone with how I’m feeling, I just feel by myself with this. X
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Flosmum04
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Hi Flos, I know it feels like everyone has moved on beyond your injuries, and to a point they have. It is impossible for others to be grasp the fact, infinite nature of our injury. We can accept the 'different us', we have to. Others, including our old self think of recovery as having a beginning, middle, and an end. Reality for us is there is the beginning, but the middle is ongoing. The end for us is acceptance, acceptance of the different.You are not alone, we are here for you. You can have a chat with your GP or rehab service to ask for support, Headway can offer support for you and those that are near to you.
thank you very much. It’s such a lonely place to be. Some days I’m up and on it and have a let’s get on with it attitude, other days all I want to do is get myself up and not have to think about what’s next. It all takes so much effort. I did ring the support line once but just ended up feeling silly and wanting to get off the phone quickly. Rehab service is non existent and getting a GP appointment is just all too much for my brain. I’ll keep talking to my chickens and sharing with them and this mazing community. Thank you x
I hear you. I had my accident in November 21, so very similar time to you. I am so lucky that the driver’s insurance is covering my rehab. I have an OT and a neuropsychologist helping me to process it all and build a life back. Coming on here I can’t imagine how so many of you cope without adequate support. Even so, I still have all those feelings of loneliness in it and the frustrations that I can’t just be the normal old me. My family sometimes grumble that in the evening I often want to be on my own, but by that time of day it is just easier to cope if I’m on my own, so I definitely get that one.
I was listening to a podcast where the lady talked about the double whammy of trauma. The trauma of the event itself but also what she called loss trauma. The trauma of the losing the you you were and the life you had from before. That really resonated. Now I ask people to listen to it in the hope they might also understand me a bit more.
I know it sounds a little cliche, but I still hope that when acceptance comes I will discover that this new me is pretty cool and maybe more enlightened than the old one.
I get so much comfort from coming on here and realising I’m not the only one, I haven’t just made this up. It’s not boring. Every time someone shares how they are feeling I feel less alone and I feel more normal. Knowing I’m not the only one somehow makes it easier.
Hopefully this will take you there. It is episode 69 of the post concussion podcast. They also talk about the comfort of lying on the floor which was so reassuring to hear other people do that. Sometimes I just have to lie on the floor and it feels so comforting.
hi! I had my SAH in July lat yr been a struggle since then but hopefully getting there and longing to drive again! Feel a bit like you , I look the same and people think I am but many things not!
My accident was 18 May 1998, Glasgow Coma Scale 8 head injury, severe diffuse axonal brain traumatic brain injury - gosh that's one hell of a tongue twister.
Everybody here is probably utterly bored of me because I so regularly say the same things.
It is exhausting and at times utterly demoralising but you must fight for your needs and to get help, do not give in. Enlist the support of everybody you can think of: your GP, local brain injury service, local mental health services, your local council, your local MP, your local Headway group, perhaps even contact Chris Bryant MP who is currently steering his Aquired Brain Injury bill through The Commons.
You are definitely in the right place (here). Do consider speaking to your other half as he might think you are now “fixed” and don’t require any special consideration. That is how it was with me though that was more to do with wife’s refusal to accept reality. Fatigue can be a nuisance. I have found it best not to fight it but to rest when it strikes. The community on here is helpful and supportive. This week I received advice on pain management and have emailed the GP this morning seeking a prescription.
Hello Flosmum so many of us have been where you are now - i know i have and just writing it down can help more than you realise - also i believe any interaction with animals is incredibly therapeutic- and of course people who really understand what you mean and how you feel - there are lots of us here! You are doing all the right things and time will just take its course . Big hugs and very best wishes to you
Actually Flosmum - just reading through your replies I realise there is another benefit from speaking out - it helps other people feel free to air their own worries and needs so probably helping more than you realise-well done you xx
yours words could have come out of my mouth .. I’m 2 years past accident and have improved a huge amount .. but I’m not the same and still trying to find the new me and it is slowly getting there .. keep taking on here as it has been so good to talk to people who just understand . I write everything down in diary as I wouldn’t have a clue later on and the tiredness has improved so long as I don’t feel to stressed out as that exhaust me .. sue x
I had my accident in '78, was out of work for 10 years until '88 before calling it a day in Dec 2021 to become one of the economically inactive. I didn't achieve much or progress from the bottom within my career but I came out of the other side in reasonable shape. If you're with the type of employer who takes staff welfare, H&S and reasonable adjustments seriously then that can be a good way to raise awareness and gain evidence regarding your hidden problems to show that you're not ok despite what you say (the second question is the important one which never gets asked, that is: "Are you really ok?"). The Headway website has lots of useful information that you can use to educate those around you (both at work and personally) as to the many many differing effects that TBI can have on an individual. It's far from easy to educate (I certainly didn't succeed with family as much as I'd have liked) but try not to suffer in silence.
Hello I feel the same as you and had my injury back in August 2021. I feel that I have got worse now due to changes in the workplace with no support from my GP saying I just need to wait till I attend neurology. All the information I got from headway makes it sound as if there is a lot of support but there is none. Feel free to talk as I am with you.
As with most things these days, not just those of us with TBI, you're all too often on your own despite being told that help is out there. There may be some help but whether it is appropriate and accessible is a different matter. One of the best things that you can due is use the literature on the Headway website and inform those that need to be informed that you feel as you do because? And show them the literature (highlighting particularly relevant issues for yourself can be useful) which can educate and hopefully start useful conversations, whether that be personally, at work if you're lucky enough to be in work, or with the medical profession (I've found that it'll often open a GP's eyes)
Thank you trevor78, I gave the GP headway's form, and she said no, we don't do any of this, you will need to wait to see neurology. I have tried several times to run away and end my life but my husband keeps stopping me. He finds it very hard to understand but will not read any of the information. Lonely with sore head and blurd vision, sleeping all the time day and night.
I don't know what form that is but GPs do seem to shun admin these days. I had the same response as you when I asked about PIP a couple of years ago. In 1996 I just left my DLA form for comment and my old school (now retired) GP just did as requested and I picked it up when done. If you're in any way suicidal then that serious and can't wait. You need to tell that GP asap or see another if there is one who's more receptive. I can see two links in here that match your issues and the third will be in there somewhere. headway.org.uk/about-brain-... - Have you any other family who might be a bit more understanding and could talk to your husband?
Hi Flosmum04,I suffered a TBI Oct 29th last year so just over 3 MTHS ago. I don't know where I am at with recovery but reading how you feel struck me. I have no memory of what happened to me and since the injury nothing sticks with me either. I can't remember words, items things that have happened, my voice has changed along with speech and swallowing and I can't burp normally which leaves me bloated. I'm hoping these things will get better. May I ask how long after your injury did you return to work and whether you returned in the same capacity?
Like you I don't want to bore anyone. I think I'm fine because I don't really think much about anything as I can't.....
Hi Damien74, sorry to hear about your struggles. Although it probably doesn't seem like it 3 months is still in the early stages. My wife had to remind me almost daily that I was expecting to recover faster than what is expected. I'm two years in and while many things have drastically improved I'm still a person with different capabilities to my pre-injury self.
Every TBI is unique of course however these symptoms are shared by fellow survivors and I had similar difficulties which have since improved (about the 6 month mark). I did a very slow return to work 2x 3hrs shifts weekly then stepping it up essentially 2 hours at a time but I was fortunate enough to have an OT guide me through it. I don't work at the same capacity any more for example I don't have any managerial responsibilities but I do work full time with help around the house from my wife. I realise that you didn't ask me these questions but I see it was 6 days ago since you posted and wanted to make sure you got a response.
I didn't want to bore anyone either but it is important to be honest, open and upfront. The lack of visibility from our injury can mean that people make assumptions which is only fair but if we reinforce those assumptions by telling people we're fine then of course they. won't understand what it's like to have suffered a TBI.
May your recovery continue to progress and I hope you're symptoms reduce 😊
Hi Radiohead101,Thank you so much for taking the time to reply to me. I don't have much support from colleagues, acquaintances then I've been here just over a year. It's taken reading on here to try and understand that I'm surviving a TBI and that I'm at the beginning of recovery should I ever get there. I'm glad you are where you are and it gives me hope. As you said though; each TBI is unique but to be told positive journeys is such a soul lifter...I can't think much more but thank you....
That must be tricky creating a social and support network in a relatively new environment while you're recovering. Glad you're on here, it seems like there's some great support and people who can relate.
I'm confident that you'll continue on your recovery path but be mindful that the destination may be further or different to what you're expecting. At times it might feel like your back tracking or taking significant detours or the path might take you places you weren't expecting. As others have pointed out it is really an ongoing journey one that I am still very much on which can be hard to hear but it's just like any skill I guess. There can be dramatic changes early on and then as things get better and better the fine tuning and smaller thing take longer to master.
I could relate to your post and I see there have been some great responses. My TBI was 2 years ago and you're the first person I've heard of that also suffers from numbness, pins and needles. I have constant pins and needles in my right hand which my OT's, physios and neurologists weren't able to explain or help reduce but fortunately I've grown more accustom to it and really don't notice it unless I pay particular attention to it.
Fortunately my wife did an incredible amount of research regarding TBI's while I was hospitalised and has been an amazing support. Perhaps it's worth encouraging your husband to read some research or listen to some podcasts to gain a more thorough understanding of TBI's.
I have recently relocated from Australia to Norway and even though I have friends and family here it can feel quite lonely too. I've recently been searching for a virtual/online peer support group, which is how I stumbled across this great website. I think it's important to have people around you that either understand or can relate to what you might be going through.
As I wrote on another reply here due to the invisible nature of our injury people make assumptions and if we reinforce these assumptions by reassuring people that we are fine, rather than being honest about how we're coping then unfortunately it's unlikely that we will receive the support or accommodation that people would have been willing to provide.
Fortunately it seems like there's plenty of people who are active on here and can relate to what you're going through! Don't worry about boring people you can be honest and brief and they will ask follow up questions if they feel the need, just. important that. we make them feel comfortable enough to do so.
Appearing normal sounds so familiar. Even when I’m feeling at my worst I probably look “okay”. It’s the reason why there is sometimes little understanding from family/partners - if you can’t see it, then it’s not there. It even makes you question yourself sometimes.
I also find that my short term memory has been affected. Retaining new information and instructions is difficult.
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