hello: I wanted to say hello. I had a subarachnoid... - Headway

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Haloumi profile image
12 Replies

I wanted to say hello. I had a subarachnoid haemorrhage just over a year ago. My life has changed completely…I’ve changed completely and I’m now trying to see a way forward. I look forward to accessing the forum.

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Haloumi profile image
Haloumi
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12 Replies
PurpleOverlord profile image
PurpleOverlord

Hi Haloumi, welcome to the forum! It's a great place for folk who have a brain injury to chat together about our experiences. So much of what we've experienced is very different, but even more, we share similarities and understanding.

Adapting to this new version of ourselves is really scary at first. Of course, lots of us need time to turn away from recovery of our old selves, and focus instead on working out who we are now. Figuring it out is a huge adventure!

Great to meet you ❤️

Haloumi profile image
Haloumi in reply to PurpleOverlord

This really rings true ‘turn away from recovery of our old selves, and focus instead on working out who we are now’ goodness, I need to work that out! Thank you that’s really helpful already 🙂

skydivesurvivor profile image
skydivesurvivor

welcome! This I’ve found is a life saver!! Spent 20+ years recovering from a traumatic brain injury. Here I hope, like me you’ll find support from others who are in the same position?! Somewhere to chat, rant y frustrations?! As y go through the fun of redefining y NEW you!! Good luck & please just type y questions. Know someone will answer!! I learnt to SMILE to spite my injury!! A weird relief I found works!! Have a good day

Haloumi profile image
Haloumi in reply to skydivesurvivor

Thank you, I need to start writing I think. I lose sight of progress.

Writeronstack profile image
Writeronstack

Hello Haloumi

This is a good forum, and PurpleOverlord above has got to the nub of it, right at the start - we are all trying to work out who we are now. I found that every time I did a bit of new self-definition, ( I joined this forum about six months after my injury, maybe? ) there was someone else who had concluded something similar on this platform. It was so reassuring to have that marker. Some of us have 'got there' - a sort of stable version of the new person, (my brain injury was over two years old now) and others like me are simply trying to see what new version of 'me' has emerged in the last few days.

I am keeping a day-log. And that is really helpful - I see that two years on, I can do some of the things I thought I would never be able to do again. But in the mean time, my tastes have changed, and I don't want it any more, with quite the same intensity as before.

Wherever you get to - very good luck. There are many of us making this journey. And if you see it as an adventure, then that is a great start.

Welcome to the forum. Stay with us.

Haloumi profile image
Haloumi in reply to Writeronstack

Thank you, I think a log is a great idea. I forget everything but remember what I can’t do 😀self defeating because I am a different person now.

Writeronstack profile image
Writeronstack in reply to Haloumi

The log was a life saver for me. My memory was the main issue - that is why I started it. The memory has improved only slightly, but even this morning, I started by looking at the log of stuff I did yesterday, and checking what was left over. Also, what I want to learn, so I can add it to today's log, and read it several times.

Such a useful way to start - and gives me a sense of accomplishment, that I managed to do some useful things yesterday.

Today I wrote down a fresh set of things to do. But I haven't finished yesterday's things.

That's the nature of life, right?

Mine is just an ordinary Microsoft Word document - called 'day log', with a 1 at the start of it, so it always is the first thing I see on the document list. If you use Google Keep, or something similar, then you can search by date, or any word, I think. Useful memory aide, I was told.

Good luck.

GSDsarespecial profile image
GSDsarespecial

Hey up. I had my subarachnoid haemorrhage in July 2022, after 14 weeks in hospital, various drains, a coil, a shunt i was discharged October 2022 and i feel like I've been on a rollercoaster ever since. I have good days and bad days, which i find awfully frustrating. I've tried at times to do a log but then forget. I want the old me back, but know that'll never happen, i need to learn techniques to help myself recover to the best of my ability. I go to local Headway group on last Saturday of the month and this is my highlight as i don't have to pretend there or wear a mask. The new me is different and the fatigue is ridiculous which doesnt help. My head at times is like a washing machine of spin cycle constantly and its like constant brain ache like a toothache and I'm fed up of it. Sorry I'm moany pants today, I'm shattered n home alone tonight, so feeling fed up.

Big hugs to anyone reading this 🤗

Alibongo60 profile image
Alibongo60 in reply to GSDsarespecial

Sending you big hugs too xx love Alice xx

Alibongo60 profile image
Alibongo60

Hi Haloumi , welcome to the group where you can get lots of support and answers there’s always one of us been in that position or faced that problem. I too lose track and memory remains poor, my bleed was seven years ago and I do still have problems, I do still feel I have come a long way. I think part of this is the acceptance, that we have changed and the brain needs time to recover, it may not recover fully, but there is always time for some improvement. I feel I have improved since the early days, still lose track of words or conversations especially if tired, still have penguins in back garden but we laugh, and plod on and hope for the future. I send you lots of luck and love, keep popping back and letting us know how you are doing, xx

Haloumi profile image
Haloumi

thank you. I’m having one of those days today. Did too much yesterday so ended up cancelling important things today. I feel woozy and bone tired. Thank you for your encouraging message, I needed that!

cat3 profile image
cat3

Hi Haloumi. My SAH was 12 years ago but I remember the challenges of the first 12 months.

I assumed survival meant I could edge back to normality pretty soon after discharge from hospital, and it was bitterly disappointing finding myself floundering.

I guess it's all about moderating our expectations and, in turn, our behaviour. Compared to nowadays, what I used to get through in a day looks like wonder-woman stuff.

Acceptance took around 2&1/2 years. At that point I stopped berating myself so much for loss of concentration/dexterity/memory etc.,etc., and started to take pride in smaller or different tasks (or larger ones in twice the time).

Be kinder to yourself and there will be better days ahead... x

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