I had a subarchnoid hemorrhage in August 2020 and it changed my life massively.i had an endovascular coil fitted to stop the bleeding but I had stayed at home for a day and half with the thunderclap headache and vomiting and not knowing where I was.i didn't know who I was or what I was going to become.the best way that I could describe it is that I looked in the mirror and I saw me but inside me was gone.its has taken alot of hard work to accept that things will be different now for the rest of my life.i also got hydrocephalus from the SAH and suffered with really bad headaches until I had a VP shunt fitted in Dec 2022 which was a relief from keep having lumber punctures to release the pressure.I know I have changed alot.i have ADHD, OCD and COPD.i also suffer with anxiety and depression,fatigue,headaches,short term memory loss and more..but I keep on going being the best person that I can for my children.i live alone and prefer it that way as I feel I would push people away with how I change some many times in a day.i can't feel emotion or show it,I sleep alot,I forget alot and have no fear of danger so don't use my cooker and things.
I have days where I don't want to get up,leave the home,talk to anyone,open my blinds.i have days where I have really bad headaches and can't get up out of bed.but I do have days where I do get up and clean my home,everything has it's place and has to be done my way,I don't like change,and I even make sure everything is spotless before I go to bed in case I don't wake up again.
This has been life changing for me.things that I have put in place and the help that I receive from the neuro team, mental health team ,my GP etc has been second to none.
Hope someone can relate to this...it just shows that we are not alone and that there are other people out there suffering after a brain injury too..I know you can't always see a brain injury and that can be hard for other people to understand...but that's there problem.be yourself and keep smiling 😁
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Roundhead1974
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After a SAH (coiled) in 2012 I was left with several issues such as reduced mobility, emotional volatility, poor short term memory (especially word-finding) and poor balance.
I get how it feels to see our familiar image in a mirror whilst knowing what's inside is so very unfamiliar ! But I guess I've had much more time to adjust and accept the changes and losses.
At your present (2 yr) stage I was still fighting to be as good (or better) than before the bleed and it was hard letting go of those expectations, but necessary as you'll know too well. Your methods of coping ring many bells with me. I live mostly alone and, like you, put the best 'me' forwards when loved ones call in or phone. And, like you, on good days I'm pretty productive.
Your comment of needing everywhere clean & tidy before bed made me smile ....it's good to know there's someone else out there with the same superstitious ritual.🤔
Hope we'll be seeing you around. Take care, Cat x
ps ... no prizes for guessing who's your your team...
Thanks cat 😁 yeh Leigh leopards are my team.i used to go and watch them before I got ill.i can't go anymore as I can't deal with alot of noise or people my brain would just overload.I'm really glad I have joined this forum as I don't think there is alot out there to help us super humans (brain injury survivers) to understand what we are going through and that we are not alone.
Do you get outdoors much R. ? I miss my occasional 'escapes' to the woods or riverbanks since a painful knee injury 16 months ago (still waiting for ortho-appt. & told it won't be 'til next year 🙄).
It was a good distraction from what's inside my head and, despite dodgy balance from the brain injury, I'd walk for an hour or two with spirits lifted afterwards. And having a healthier cause for feeling wiped-out was a bonus too ! 🥱
Don't really get out.i have COPD so can't breath after I get to my gate.i did have a mobility scooter but it broke so just waiting to get another one then I can get about.i only stay local as I forget where I am going and what I was going out for alot of the time...I'm lucky if I have my shoes on the right feet 🤦🤣
I've been taking solace in my garden since the injury and travelling the world on Google street view ! I was on the 'Avenue of the Baobabs' in Madagascar earlier today...🙂
Hope it's not too long to wait for your replacement scooter and that you, at least, have an outdoor space at home to enjoy in the meantime...
I'm so sorry you have been through such a life changing experience. Unfortunately I can relate to most of what you are going through. My TBI was May 2023 so relatively new. I'm slowly learning to accept these lifestyle changes. With a young family it's difficult but we are trying to take it a day at a time. Some good days, some bad days. It's comforting to have this platform to chat to other survivors.
Am the opposite! Unable to care about anything!! What’s left of the old me withdrew deep inside me, saw the painin family that the old me wasn’t there. Am emotionless, good side is that only me @ my bro looked after/ visited mum before she died in hospital. Other siblings came the night she died, 6 weeks since they’d last seen her?!! Clear memory of waking bro to say she’d died 3.30 the next morning. Was adamant I would stay with her, bro reluctantly agreed to stay too. Am haunted? By the memory of her passing, 4 years to the day after dad passed. Thank god I am emotionally numb, divorced, abandoned by social services since passing of mum, my sole carer!! I think I know some of what y going through. This site is my lifeline!! But life goes on!! Thanks to the NHS!! Keep smiling?!!
Oh so similar!! I suffered a traumatic brain injury in 2000. 5 weeks in an induced coma, 23 years on am divorced, cared for both mum n dad before they passed. Like u my life changed totally. Now looking for a reason to leave my flat. No friends/family, they all saw the old me, unable to accept a totally different new me! Day centres closed, saw a social worker 2 year back who had no record of me?!! Sent to a memory clinic, seemed normal. When the brain scan came back they couldn’t believe it was mine!! Seems today soc. services are more concerned with kids n the result of lockdown, disabled have been cast aside!! This place has saved me big time! A world on screen, unseen people who share their struggles, support & CARE?!!. We rant wildly but get amazing unbiased support!! Go to y G.P They don’t know how to deal with us, we present as ok, we can’t explain our troubles . Smile sweetly n go?!! Just know WE will share n support you!! S type soon oh & smile to spite y cituation?
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