I had a TBI due to a fall 20 years ago, coma for a month, year of rehab, sepsis whist asleep. I was determined to get back to my old self as best I could and have got a postgraduate degree, professional qualification, got married had children since.
I have never posted because I achieved what I set out to and am insanely grateful for the care and support that helped me recover.
I am profoundly deaf in one ear, lost my sense of smell, taste affected, tinnitus and some executive functioning issues.
I get overwhelmed constantly by decision making for example mornings getting everything ready for school and work is so stressful triggering tinnitus and panic. Packing for a holiday is a nightmare.
I write to do lists, try to delegate but my brain just can’t seem to order tasks or allocate time correctly. I know my difficulties are a pain for my husband and family.
I’m not complaining, my prognosis originally was death or supported care foreve, I know I’m a miracle. Just wanted to know if anyone else out there who seems fully recovered has similar issues managing day to day life.
Thanks for listening and I wish you all the best with your own journeys.
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4158Bear
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I like you had the same prognosis death or support care and like you I've come through it as best as possible. No sense of smell I miss being able to smell perfume and my taste factor is now really sweet or strong if not I eat what I used to like and conjure memories. Its strange how memories from 20 years ago are there but the fact you put on eggs to boil 5 minutes ago are only there with a timer.Yours is harder because you have a family mine is just looking after me with a notebook a blackboard and a timer.I too have minimum hearing in my left ear at the time of my accident my skull was fractured behind it and my brain bleed out of it and like you tinnitus which at the beginning was a nightmare as I couldn't hear what anyone on the left side of me was saying I used to have to lip read, my dr sent me to an ear specialist I now have a behind the ear hearing aid which also masks the tinnitus so while I wear it no tinnitus. Have you tried a hearing specialist to mask the tinnitus for me its bliss.I have been lucky as I no longer suffer anxiety, depression or even worry about anything Pinkvision would probably be able to tell me what part of my brain got knocked out in that respect. Regardless of my little issues life is precious
Thanks for responding. I’m so glad you managed to solve your tinnitus problem. I did see a surgeon about rebuilding the broken bones in my ear but covid got in the way, good idea to revisit that. Did solving your tinnitus help with anxiety and processing?
What is Pink Vision?
Lots of questions! Glad you are doing so well life is very precious 😊
The ear specialist said the tinnitus wasn't coming from my ear but the sound box in my brain it just seems like it's coming from there but he went out of his way to make sure I got a behind the ear hearing aid which would improve the hearing and mask the tinnitus it's the first thing I reach for when I wake up while I wear it no tinnitus its bliss so speak to your dr it really does make a difference to be able to hear people properly it was awful when I couldn't understand you nod as if you do but you don't, I don't suffer anxiety i did before my accident nothing gets me down now so I think that part got knocked off in my brain like my sense of smell. Pinkvision is one of the members he just seems to have all the answers for the different functions of the brain but go see the dr to see if you can get referred to ENT not hearing the tinnitus really is great ,it means I don't sleep so good at night as I have to remove the hearing aid while in bed but I can live with that to function better during the day
hi ..bear so nice to read your story and what you have achieved after your TBI 😊 .. did you have the cognitive issues from the start or has theses and the anxiety got worse later on … I’m sort of in a strange place at the mo as I have continued to make progress with the physical injuries and thought i would get back to what i ( the old me) was wanting to do but I find my brain can’t process, concentrate and so on Meaning I’m know realising I can’t do lots of things that u has hoped I would do again … my life is notes alarms and relying on others to do what I want to do and this has brought on anxiety and racing heart … please if you managed to do a degree , have a family with all the notes , alarms etc I would love to hear as the old me is fighting the new me daily .. 🥴 sue x
My cognitive function has definitely improved at the beginning I struggled with word selection, visual memory. Headaches also much less frequent. I think the year of neuro physio made a big impact.
I write down endless lists and my brain just wants to do everything at once resulting in meltdown 😅 I will try the suggested app great idea thank you 🙏
Will also work on hearing support sounds like tackling that could bring plenty of relief thank you for the suggestion.
I think I seem so outwardly ‘normal’ and people still congratulate and wonder over how well I’ve done. They are so right I have, I’m so lucky but inside it’s a bit like nobody can see that I’m often treading water to keep up with life. The fact my brain is struggling to process and keep up makes me feel a bit of a fraud I’m way less intelligent than people think. Still struggle to recognise faces which can be tricky socially. Does this sound familiar to anyone?
So much the same, I too look "the same" so therefore must be "the same", how little people understand !!! Wordfinding, which makes me think so I then lose the thread of what I was saying. Trying to cook, have I put that ingredient in? even when it's all put out I still doubt myself. Washing, have I washed my face, it is wet but is that after washing the soap off or wet ready to put soap on? Wrap a parcel really well, and find the letter that is supposed to be inside alongside it ! Have I written that important email, yes of course I have, but I haven't pressed send ! It is constant from the time I wake up. I tend not to go out socially any more as the conversations, noise, movement, lights etc makes me feel bombarded from every side. Unlike you I am lucky enough to have grown children and had to give up my job due to TBI, I take my hat off to you for being able to juggle your life, well done.
I have similar issues to you, I was involved in a car accident almost 20 years ago, I suffered a diffuse axonal brain injury which is the most severe type, my family were told I would die within days, but if I did survive I would need 24 hour a day care, I still have the same job, still drive etc, there are loads of things I struggle with, I get very anxious around large groups of people and I can have meltdowns, not very nice ones as I swear a lot which can be quite embarrassing in public, I have memory problems so I'm constantly forgetting things, my fine motor skills are affected, along with my speech, strength and balance, some days aren't too bad but the bad days are awful, I just want a hole in the ground to open up and swallow me
yes balance! Mine was terrible at first had to learn to walk again and moving from sitting and standing would make me so dizzy. Still can’t look up at the sky or ceiling without losing vision but massively improved from the early days. Gets me out of painting ceilings so every cloud silver lining 😅
You are all so brave thanks for inspiring me. Comforting to know other people look the same but can struggle inside too. 🙏
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Last day of Mindfulness Based Cognitive Therapy. So what happened?
cognitive/memory issues and PIP
Lack of sleep
In Search of Me
just need some hugs and strength please am exhausted 
