Hi internet friends! I am after some reassurance, or better yet, stories from people who have gone through similar. I am experiencing major impostor syndrome... like I'm healthier than I feel & act.
I sustained a mild TBI in January. In March I went back to work part time & in May I got CT results that said my haematoma & thrombosis were basically healed. I am almost back to full time work now, but still experiencing a lot of fatigue. My work/life balance is shot because all of my mental energy goes to work & I'm too drained for hobbies/exercise/a social life. Sometimes I worry that I'm making it all up because my brain is healed now, theoretically I should be back to normal now? Or is this normal?
I feel so lucky to have recovered as well as I have done after a scary accident. Part of me thinks I should be fully back to my old self and the other part thinks I'm putting too many expectations on myself. Some people have to struggle through a lot more than I have had to, so I worry about calling Headway or joining my local group as I don;t want to take up resources that others need more than me.
Not sure what I'm asking... just looking for my community. Or to be told to get over myself. I'm all ears!
TIA
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NyctalusH
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Hi I've had a severe brain injury that has affected me a lot, but I think any type of injury is horrible and hard to take. Even though it's mild it's hindering your life, fatigue is common and means you don't enjoy things as much.
It sounds like you're assessing your life and maybe you want to go part time again so you can live full life.
Everyone feels like imposter because sometimes your brain is so clear.
and you want it to be normal and prove yourself and everyone that you're better.
Thanks for your reply, it is so good to hear that this sounds normal. You're right sometimes I do feel like i have a clear, healthy brain. But sometimes I am too fatigued to think clearly or find the right words. I keep thinking if my CT scans say I'm healed, people would expect me to be back to my pre-injury self and I don't think I am yet.
Hi according to my brain doctor he says it's normal to have severe fatigue I feel like you I'm heathy but then I do stuff and next day can't lift my head off pillow
Yes exactly! One day I will be doing alright, the next can't get out of bed. I have a really hard time explaining to friends and colleagues that it's different from just feeling a bit tired!
Totally agree my mind doesn't do what it should brain can't take in what's being said let alone trying to remember what they said ten minutes later not being able to make full sentences mr shake who did my op said can last up to year or more cause the brain takes longer to recover as it also has to deal with injury but surgery swelling as well please don't think you have no one to talk to we're always here on this site to listen get all the help you can we all need a quality of life not just exist hope this helped xx
Thank you so much for sharing your experiences and for the encouragement. Sorry to hear you're having a hard time too but it's good to know we're not alone
I had a craniotomy in April 2018 due to a brain infection. I had a subdural empyema which is below the skull but above the brain, so they didnt actually touch my brain. The last MRI i had shows the infection has gone but i do have scarring. I went back to work in october but had to reduce my hours. I still suffer badly with fatigue. I look normal and cured to everyone and its so frustrating trying to explain it as it makes you feel you are lazy or making excuses. It is hard and i understand exactly how you feel!
Yes! I was starting to question if I really am just lazy! Or making excuses for myself. I look completely normal and when I'm feeling good, I act like myself as well, so it's really difficult to communicate to people that I'm not 100% yet. Sorry that you're going through something similar, it can be rough!
Yes it is! I act the same too. I dont think anyone who hasnt experienced it can fully understand it. Im constantly told "but you are ok now, its in the past, move on instead of looking back". With me though, i could do almost anything at work, and i realise now im physically weaker, cant multitask and am generally much "slower" but because i "look like me" i must be the same! Well im not!
I had progressed so well I was back at work full time but then started to feel quite unwell again and now I can barely do anything. I'm just so fatigued all the time. Some days I can barely get out of bed. I hate to complain but as his is my second time getting over brain tumour removal, I will!
I had a SAH & aneurism July 17. A shiny fitted in Oct. Then woke every day with headache and dizziness. Tried so hard to walk without sticks and get on with life. Two years on my head still aches every day. Still feel dizzy. Shunt setting as low as it can go. I walk wobbly and find the whole day a challenge and get so tired. But KBO. It’s a bugger. Why does the brain not repair and leave us so debilitated. I’m retired but work part time. I miss walking my dogs for miles. Sorry to hear of your tiredness. But I have no answer to I’m afraid.
Oh that sounds really difficult, thank you for sharing your story with me. Hope you're able to find something you love as much as long walks with the dogs.
Hi there and welcome to the site. You deserve to be a member of this forum just the same as anyone else. But I do know what you mean. I was born with a long-term condition (AVM) but it caused a secondary one when I was in my early teens. I have a VP Shunt but am otherwise well and physically 'normal' aside from my AVM. I have been extremely lucky and have a career, family, friends etc and I drive and do everything most other people take for granted. My balance leaves a bit to be desired but isn't that bad. I do sometimes feel like a bit of a fraud here because I know there are others suffering a lot worse than me. But then I remember that I do have a 'chronic' condition that could worsen in the future. And it does help me to know that I'm not alone with this. Best wishes Lulu x
Thank you Lulu, that is really sweet of you. Not usually one to need so much external validation but I really appreciate you reaching out to remind me that I deserve support too. We are not frauds and we are not alone - sending love your way!
The questions of fatigue, others' perceptions of our health. and our own expectations of it. They are certainly familiar to me at the moment and to many here too, I'm certain.
How we think others see us? Although I'm in the ' loved ones opinions are all that matter' camp, I appreciate that everyone's personality is different and some individuals ARE judgemental .
Not for the first time, I find myself emphasising it is those who judge you unfairly or ignorantly who have the problem, not you.
I completely get where you are coming from when you mention that you feel many are worse of than yourself. I struggle with that too, but I would encourage you to see this as your own journey, in the context of what you have to overcome, rather than judging yourself harshly by comparing yourself to others. They are not you.
What I would say about fatigue is not meant in a pompous, or patronising way whatsoever, but we are talking about the most complex organ in the universe, the human brain, so whilst it is capable of uniquely special things, if it needs to repair, it is a process that that will be unique to you.
Good luck with your journey, at the speed and in the way that works for you.
Thank you for you reply, I really appreciate it. I think re-framing this in my mind is great advice and I will definitely work on doing that. Plus improving to have patience with the old brain - she's trying her best I am sure (yes, she's a she!). I am starting to realise one of my biggest problems is the judgement I have for myself at the moment and your comment has really helped me to think about that.
Thank you so much for the encouragement, I wish you luck on your journey too
It is not taking resources from others. You can benefit SO much from this. When I first called them, I had initially called MIND because I thought I was going mad with all the weird stuff I was experiencing. MIND advised me to call Headway. I stalled for several days, thinking Headway wasn't for someone like me. When I made the call, it was amazing and so good to speak with someone who really knew what they were talking about. They are full of knowledge and compassion. Please do call them. Good luck.
Thank you I have chickened out and compromised with an email to their Helpline now. Thanks to your encouragement I have made this step. I am so pleased that Headway was so helpful for you. Best of luck to you too!
I am so delighted that you have contacted Headway. I really hope that helps you.
I was in a strange position as I suffered my injury in hospital but despite the consultant telling me what happened, after that he denied that anything significant had happened. This meant that all the subsequent doctors I saw believed him and thought I was imagining things! The reason I am telling you this is that my ONLY source of reliable information was the Headway helpline. I never had assessments or proper diagnosis. I was so confused and desperate to understand what was happening to me. I will never forget the very first time I called and a lovely lady called Vicky spoke with me. I really don't know what I would have done without them I also want to tell you that the helpline is very happy to speak with you even if it is just a chat when you feel you need it, or a moan when things are tough. Nothing is too insignificant to call about. I still call them frequently and I attend weekly sessions at my local Headway group.
I so hope you can make some progress with this .
Just feeling you are not alone or imagining stuff makes such a massive difference. Sorry for rambling on!
Oh god yes, as someone who has had a good recovery, and generally I look fine.
What helped for me was having assessments and then the report afterwards which detailed what was working or not and so on.
What this did was I guess validated what I had felt which is I’m not the same. It was a life changing event.
What I found as high functioning is that it took time to workout what had changed, for example months after the accident I had realised that I had though that two people I’d know for ages where not one person and following on from that that Do struggle to recognise folks unless I see them very regularly, even then if they are out of context I’m lost etc.
Which had meant in the early days I probably worried a few people by randomly speaking to them as I though I knew them! Lucky not to have got in trouble really!
Thanks for sharing your story with me and how you have coped. It is really interesting to hear how others have noticed changes in themselves following injury. It feel strange to have recovered so much so quickly, like you I am now high functioning, but feel that it has plateaued into a very fatiguey stand-still where I feel I am making little progress. Glad to hear you seem to have got control over your situation and are able to understand what works for you. I really appreciate the encouragement. Best of luck!
This is such a powerful thread, thank you for raising this question that sits in my mind all too often and that I've tried to ignore, worried that giving it voice would make it real.
I'm employed full time, highly functional and when I'm at my best, most would never guess that not so long ago I was diagnosed as brain dead with no expectation that I'd even survive, and that I was then in a coma and the doctors told my family they'd just have to wait and see if I'd regain consciousness.
So often I question if I'm just milking this injury thing, if I really just need to be stronger and more determined.
But the fatigue is real. The noise sensitivity is intolerable. And the one I struggle with the most is that it's so hard to get things done now...surely this is just me being lazy and unmotivated... I read so much about this, from other TBI survivors and from scientific studies, that yes, it's real and its from my injury. But every time I try to go easy on the self-criticism then I see the many tasks that are languishing, I feel like an imposter...that I'm using excuses.
The cyclic patterns of self deprecation put me if a very unhappy place.
I guess that my input would be, yes, imposter syndrome is real. Our symptoms truly are from the injury, but they are no easier to accept in the knowing of this.
Im like you i got told i had a mild brain injury but it has completely changed me as a person as my wife says im not the person she married i still not back in work after 8 years it took me a year to get the confidence to go to headway but hearing that othdr people that have gone through the same as you and understand you really does help i find its the only place I can e my self anymore
fatigue should be dealt with as follows...........if you work in the morning, you dont do any strenuous work until the following afternoon. that does not mean you spend the time sleeping.
taking part in hobbies and social activities and an appropriate amount of sleep time.
do you suffer any other problems like noise intolerance, problems with crowds or flourescent lighting or mood swings etc?
go along to your monthly headway meetings, youre not taking up a resource and youll meet other people who are further along in their journey, people you can talk to because they understand because theyve been there and are in a position to give advice.
We have all had good days then overdo it and that's when we suffer for it. I went to visit my brother and was all smiles but really felt like arghhh. Took me 2 days to get over it and I slept a lot. See perhaps your Brain is saying " whooo take it easy remember what we have been through" So listen to body and brain and stop overdoing it ..remember any bleed is bad news for us, so try not to push yourself too far. Wishing you well Win who had SAH
As WinB rightly says, we have to listen to what our body and brain is telling us. I suppose the flip side is that bodies aren't like scientific equations. You CAN do exactly the same thing twice , in what appears to be identical circumstances, but experience different results. Striking a balance between striving to improve and accepting limitations isn't easy, but perhaps the most important thing is not to be discouraged when something doesn't go as positively as you had hoped. It could just be that on that day, it just wasn't meant to be.
Reading your post reminds me of the line, "Don't 'should' all over yourself." A recurrent theme in my life...
Fatigue: I am shocked at how much energy it takes just to focus, keep my balance, and to keep my emotional state level after brain injury. After just a few hours, or even a few minutes depending on the activity, my head feels like Stevie's on "Family Guy," my tinnitus is blaring, I am banging into walls and furniture, and all I can think of is laying my head on a pillow.
Sometimes I feel like an imposter because I put way too much energy into appearing like my old self, when I a definitely not. Accepting feeling vulnerable really messes with my ego. Ironically, fighting being vulnerable makes me even more vulnerable. Oh, those tangled webs...
I very much appreciate your share. You helped me acknowledge some self-awareness to which I am not paying enough attention.
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