This TBI lark is knocking me for 8. Not bloody 6 nope its taking over.How stupid was I to believe in the early days I'd be back to normal within 6 weeks. Omg how I laugh abouthat complete lack of understanding.
I was a complete child!
Skipping through the meadows like the daisy's were all growing just for me.
Colour so bright and lovely I couldn't absorb it enough. Also couldn't for the life of me work out why..... at a drop of a hat I'd burst into tears. Little to no control over my emotions.
I felt the same or so I thought but crying like this wasn't me. The pain I felt also wasn't me. Total wiped out for hours after a 10 min assist walk
Days out , I had to have complete bedrest a couple of days before and then 4 days afterwards because I was trying so hard to continue as I was before...
It was like I was not just someone else but also somewhere else.
Then months later the cracks start to show. Sensory (noise) overload Executive dysfunction causing headaches like being hit with a shovel!
Light causing extreme pain like a rabbit in the headlights of a car with leds on full beam. Mental health dropping like its hot. Everything just seems so exhausting. Feeling like my hole world was now in fast forward x 2 but I hadn't speeded up with it and nor could I.
Unsure of my own reality as memories or events are made now from information given by others. Not my own! I feel like i have fell down the rabbit hole. Alice or even neo
like the matrix, red pill or blue pill!
Its now all in the mind...... or is it, i don't care if its mind or brain now i just know its playing tricks on me. Boy do these trick have some real power behind their punches.
Often scaring me beyond belief.
I'm hyper alert see danger everywhere.
When I try to explain i feel like everyone like me has just now had enough of all this. I want ut to end.
I know I'm not alone
The gratefulness I feel for this site is astronomical.
I still can't help thinking I'm just a fraud making all this shit up.
Then I'm like nope shouting shut up why would anyone choose to put themselves through this roller costar of a ride.
Everything seems grey, dull and just exhausting now where did all the colour go.
You just need to change how you think and all will be hunky dory.......
Of course it will.
Maybe tomorrow, emotions are just thoughts, thoughts are just feelings and not facts. So I can convince myself well again.
I'm so confused by all this
Everything feel like a paradox
Its groundhog day every day.
If I was a celebrity I'd be screaming get me out 9f here.
Nope tomorrow is another day hopefully this time will be different.
Thanks for the rant
It was much needed
Now breathe
Written by
Riverslim
To view profiles and participate in discussions please or .
You've summed up the frustrations really well here- I'm just coming up on six months post-TBI and I'm still finding it hard to accept that recovery will be the work of years rather than weeks.
We're dealing with illnesses that strike deep into the very core of that which makes us human. The brain has to mark its own homework - nothing else can help it make sense of its own damage. Mine is frightened of its own vulnerability, frustrated at its new inconsistency and the confusing signals it's getting, and still grieving for the past when it felt safe and infallible.
On the 'good' days I start to tell myself I must be imagining these symptoms, while on the 'bad' days I mourn for the person I used to be.
I used to train all year round and race 100km triathlons. Now I need two days of rest after a 40-minute walk to the low hills behind my house.
I used to take my classic car to shows in the summer with like-minded friends. Now I can no longer drive at all, and my beloved car is sat forlornly in the garage while I put off selling it.
It hurts. Big parts of my identity, my sense of self are damaged or broken. But amidst it all, I do still find little glimmers of light, slightly new perspectives.
My enforced slow-down means I have time to see more detail and beauty in the world. The old stone cottages in my village, the ever-shifting colours and variety of life in the woods, the subtle nuances of my cat's moods and behaviours, the calm thoughts that I can explore when I rest in the shade on a sunny day for an hour without feeling guilty or unproductive.
I've taken up sketching, revisiting old books, and building up my vinyl collection. I'm currently looking at buying a telescope and learning astrophotography, which looks really exciting. My TBI left me partially sighted, so things take a little longer now, but in our modern world of constant distraction, noise and artificial urgency there is a certain mindfulness in rediscovering the art of doing simple things well and giving them your full attention.
Time will heal eventually, but even in the darkest moments there is still happiness and peace to be found in the present.
Me too lovely... me too. No point trying to explain it to myself or anyone else including the medical or mental health team... they will never understand. 😣 x
welcome to my world?!! Takes time to recognise, accept the changes. Had loads of loss at the time to deal with too?! Many friends/ family unable to deal with the new me?! After TBI tried to go back to work on therapeutic basis, unable to do 1 simple part of old job. Partial sight didn’t help! Saw DWP doctor when I came out of hospital, asked me 3 questions name, date of birth, where I lived?! Didn’t help I took a med cert for him to sign so I could go back to skydiving?! See!!! Stopped my benefits!! Lived off bank of M&D year whilst waiting appeal date? Needed 6 points for long term sick, was awarded 13!!! 20+ years on redeveloped me?! I kid myself, on antidepressants!! Stopped sudden bursting into tears!!! Etc. speak to dr, they do help was reluctant to take . In 92 we’d 6 months went to work got pinned to canteen floor with gun pressed into back of neck after robbery, took them 4 week! Binned & went back to work. Throwing people out of aircraft was much more therapeutic?!! Keep safe, ur not alone!! Oh & to smile to spite y stupidity I find very helpful
Hello. I must say that I read your post with such sadness, as you have given words to some of the experiences my son must have experienced after his TBI.
What you say, how you feel, your immense confusion, your anger, your frustration and so much more all sound so familiar. (I think I could write a book as there is so much I could say - but I'll stick to the main reason for my reply).
At one of my son's therapies, we were told that the human body functions on electricity and chemicals. Not being remotely science-orientated, I checked it out, found out it is true, don't understand it whatsoever, but have accepted its truth. And from the description of how you are feeling, it really sounds as though the electrical activity in your brain is in overdrive.
I am not in any way medical, however what you describe is so similar to my son's situation that I felt the need to reply, and suggest that you try to see a neuropsychiatrist for an evaluation. (My son takes medication to calm down the over-activity in his brain).
None of how you feel, what you think or your confusion are your fault. Regaining life after a TBI is a hard process. It cannot be rushed, but it can be helped.
If possible, try to use strategies such as - * keeping a diary of your day and how you felt and coped : * keep some lavendar in your bedroom : * play calm, soothing, peaceful music gently in the background to create a calm environment : * try to have as much routine as possible in your day/week. * try drinking decaffeinated tea or coffee to reduce the caffeine stimulus.
But, most importantly, see your doctor and get a referral to a neuropsychiatrist - (the problems are neurological after a TBI).
I really identify with you as I've lived through all you describe, and more, with my son, and I know that once balance is either restored or improved to your electrical and chemical functioning, you'll find more control and purpose in your situation.
Our motto - "Never say Never" and always try to be pro-active.
I hope you have family or friends who are supporting you, and I wish you God speed in all the efforts you're making. 💐 x
Your language is ever so slightly stronger than mine (🤣) but after 27 years I understand exactly what you're describing.
It's bloody hard work still but that's much better than giving in, and sometimes a lot more fun.
BTW I find there is little understanding among the people who are allegedly there to help us in authority. In every case I have come across - Brain Injury Service, Mental Health Service, Headway, Citizens Advice, etc., etc. - they have not had a good bang on the head and really don't understand. That's been part of my fun, directing them .... not always very well 🙂
It’s a long tough road, one we don’t get prepared for.
When I asked how long recovery took I just got “I can’t say, but you’re already better than last time I saw you”. What a crock of 🤬.
Trust me, everything you say, everything you feel, we understand. We’ve been through it. I’ve only just turned a corner and it’ll be 3 years in May. Not what you want to hear… but it’s the truth.
I was advised by my GP to write a diary. Not every day but when I felt overwhelmed. My diary has days where you can hardly work out what I’m saying as I wrote so quickly and we won’t mention the language 😉. I ranted, I cried, I blamed, I swore, I accused the NHS of only caring for the rich and famous. I even wrote a suicide letter.
I’m not who I used to be. Calm, diplomatic, loved my work and was good at it. Hated to be inside, either gardening, walking the dogs, long walks with family and friends, socialising and enjoying music, loved upcycling old furniture. I now I only go out when necessary with someone I know. I stopped gardening, no motivation for any kind of craftwork, housework or even eating at times. Now I’ve looked outside and thought of putting some flowers in so I know I’m heading in the right direction.
You can get through this if you don’t bottle up your emotions. Rant on here as much as you like. Try not to concentrate on what you used to do but instead just concentrate on resting, resting and resting. The brain takes longer to recover and only rest does that. Everything else (mental and physical) is frying, wonky, out of sync because the brain works it and the brain needs time to heal. The more we fight the changes the harder it is to recover. It’s not easy - it’s damn hard, I’m no saint, I only know this in hindsight.
Someone on this forum always hears you and helps you through. This forum has been my life saver and I cannot thank everyone enough. ❤️
Stay strong, rest, and the New You who emerges will be like a butterfly emerging from it’s cocoon ready for the next chapter in life. 🦋🌼🌸🌷
I wonder if medical "experts" know how much this site has helped people since their TBI's. I have gone to many an appointment expecting instant healing and come out drained and realising that they haven't a clue as to how we actually feel. I am sure this site has helped many when they are at their wits end and see no future. If it wasn't for the help, advice and humour on here a lot would have given up. Thank God for health unlocked and headway, at least they understand.
Underestimate the effects at your peril. Push and be “normal” and pay the price. What’s normal anyway!
Taking each day as it comes. Planning as little as possible and waiting to see what you feel like first is the best way. Then if plans do t happen you do t feel disappointed or like you have let anyone down.
Living in each moment as it arrives and being grateful for every little thing that pleases or engages you is a real key to contentment. But the biggest and hardest thing of all is accepting that this is how it is now.
My Version 2.0 is nothing like the prototype, I thinks it’s better and more thoughtful and certainly more appreciative. I like V2.0 now and have stopped comparing her to V1.0 as that just leads to sadness and I choose to be happy. It’s a much nicer way to be.
Life is still full and pleasures are there to be had but only when you are ready and have the energy for them.
my goodness Riverslim!🤗🫶I feel like you have literally taken the words out of my mouth. I am feeling so lost and waiting to just get through another day. That’s as good as it gets for me at the moment. To read your words pains my heart tremendously for you but gives me relief to know i am not alone . My only comfort is being with nature which takes through my days. I pray we all have better days ahead 🤗🤗🤗
I could have written every word you have written 😢 when I’m quite , alone , no noise I think im imagining this then like I did a couple of days ago fell over even with my walking sticks for balance .. it was dark ,there were street light but bang flat out in the pavement grazed my knee but it also gave me clarity that I’m not imagining this crap life 🥴 then last night I asked to please let me speak as it was a conversation that i was involved in yet one of my sons cut me dead by tell me “ yes I know we have spoken about it “ no understanding of what I was trying to say or the fact that I can’t always go back and find what I was trying to say … I just went out early as can’t always deal with this rational .. hurt and upset that even with me saying let me speak ( as I have to say to attempt to join in ( he still had no idea .. shit invisible life changing damage that I don’t want .. so like you I also need to rant and thank god for this forum ❤️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Compensating/Internalising?
pip update
Personality/Life Changes...?
Zero tolerance for noise
Post Concussion Syndrome
