I had a brain haemorrhage (due to an AVM) back in 2012 and spent a year and twenty two days in hospital... I feel lost and I feel abandoned as my family and friends are no where to be seen. I’m just reaching out for help and thought this would be a good place to start.
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Wazza84
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Hi Wazza , it’s really difficult and challenging after a Brain Haemorrhage. I also had a SAH in March 2015 and it has changed my life because I have changed. You may lose friends but make new ones that are in the same headspace as you. I started to make some new friends and my family had to see my neuropsychology dr so that they could understand the changes in me and that has helped my relationships and understanding. I also joined some new groups and help with a Brain and Spine charity. All of these things are helpful for me to recover in a better way. My therapist told me ‘ recovery is an ongoing process’ hope this helps x
Hi Wazaa, I also had a brain haemorrhage and feeling lost was where I was for years. I eventually put a website together with my learning to help others but also to help those around me understand what I was going through, it might be of interest to you, braininjuryftp.com.
I am ten years on now and the last 6 months feel like I am returning to normality!
All the best, it's a really difficult and very lonely path to tread but there are positives to be taken from it and it does get easier!
Thanks for you reply guys.. just knowing that I’m not the only one goin through this helps... My moods are up and down and this is the first time I’ve reached out.. I don’t talk to anybody about my “moods”
Hi Wazza. My SAH was in Dec 2011 and has certainly changed my life in that I no longer socialise and now spend most of my time alone. I'm easily overwhelmed by too much stimulus and as my word recall is poor, meaningful conversation is often difficult.
I'm a reader and gardener (big garden so always work to do) and I enjoy crosswords and online card games which, I believe, have improved my word power and mental stamina over the past 6 years.
I look in on Headway every day and feel an affinity with so many people here ; it's my second family. And, as word recall isn't a problem here, I can take my time and still say what I want to say ............... so it's a lifeline for me and many others ! Stay around and get to know us all Wazza........... See you around I hope. Cat x
Hi Cat3.. it’s like you’re speaking my words.. I mean I got overwhelmed by busy crowds and struggle with a conversation especially if more than two people are involved. I’m not too keen on gardening but crosswords and online gaming of all kinds are my thing. I think I’ll come back here daily to read people’s stories and occasionally post a few. Thanks.
Hi goldie11.. thanks for your advice but don’t think I’m ready for voluntary work as I suffer with mental fatigue and think I would struggle.. thank you 😁
Hi Wazza, I can relate too like loads of others here. I had an Pretty sizeable SAH during surgery to remove an AVM in 2010. Things have changed so much since then it’s unreal. My whole family turned their back on me and I lost many friends too. From what I can gather from others it seems people don’t know how to react and just ‘walk’. I can’t relate to that at all as I am the exact opposite but it seems it’s a common problem with brain injury sufferers. Just so you know, you’re definitely not alone in this. X
Hi AlmaMatters.. thanks for your reply. Most people just don’t get what it’s like recovering from a brain bleed saying things like “you did it yesterday” or “I know I’m tired too”. Having contact with other people in the same situation really does help 😁
Where abouts do you live? I go to a great BI group near me. If you can join any groups for BI it could help tho headway is main one in uk I didn’t have much luck with them but one I go to is great for help and social activities. Maybe there are more groups in other places I don’t know.
Hi Wazza sorry to hear you are feeling lost, i had a brain haemorrhage in 2006 caused by an AVM and radio surgery to treat it have you had treatment for yours x
Guess I got lucky not to have to go through it a second time.. when they screwed the head frame on it horrified me 😱 don’t think I could do that a second time 😔
Hi Wazza. Pleased to meet you. I have an unruptured AVM. It is large and untreatable. So I'm having to live with it. Sorry to hear you are having issues with your family and friends. Some people do have a habit of drifting away and distancing themselves from anything medical. I think they are scared or don't know what to say. They don't seem to realise it is the worst thing they could do. Lulu x
Hi Lulu.. thanks for your response. Is your AVM not treatable by radio-surgery? I’m not too sure about these things but radio-surgery got rid of my AVM (after a major bleed) suppose your Dr has already told you about this 🤔.. I’m not really having issues with friends and family I just don’t see or hear from them 🙇🏻♂️ but I get what you mean and thank you for your message.
Funnily enough my Neuro is consulting Sheffield again at the moment. But on last time of asking they wouldn't do it. They said the AVM was too large and there was no hope of getting it all. My understanding is that if they don't manage to obliterate an AVM it can recruit new vessels and regrow itself and you're back to the start.
I’m sorry to hear that. I got lucky and only had to have the radio surgery once and it only took 55 minuets under the gammer knife.. many people have told me they had the surgery on more than one occasion..
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