So I’ve just watched Ambulance: Code Red on channel 5 and quite a lot of accidents that resulted in brain injury were featured on it.. it made me realise what the ambulance did for me on the night of my haemorrhage, and could relate to the brain injured people… only these people were involved in ACCIDENTS and I wasn’t, I was born with an AVM which I knew nothing about until it burst at 28 years old.
I feel… I don’t know how I feel.. it’s just those people can say “yea I was in an horrendous accident” and people will understand.. all I can say is I had a brain haemorrhage & explain about how I had an AVM and go on to explain what an AVM is.. I spent a year and twenty two days in hospital yet people in horrific accidents only spend a few month in hospital..
I just find it very strange that I’ve got nothing to “blame” my haemorrhage/AVM on 😞
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Wazza84
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I fully agree, some will say they understand bug on the basis that we don’t ‘look like we have a brain injury’ tell us that we’re just making excuses 🤬
Don't beat yourself u, I just think no one really gets about brain injury even medical professional like Gp's as I've researched quite a bit and having Headway as a back up, the Doctors don't fully understand about the condition. I end up having to print off the evidence from Headways to prove to Doctors why I have certain symptoms. Please be kind to yourself, your not alone 🙏
I totally agree. Really no one understands, even GPs. My previous doctor didn’t have the specialist knowledge but gave me the necessary support and advice and medical care and sent me to doctors who were specialist. Since moving here, the doctor has no understanding or interest in head injury or brain injury. I feel like it’s a losing battle, in fact I feel like I’ve lost the battle.
If your feeling down and need answers, the Headway professionals are fabulous and I've got a lot of advice from them so call or email and they are a life saver but please be kind to yourself x
Our ABIs are from around the same period Wazza ; yours early 2012 - mine Dec 2011. I know the lack of understanding can be a pain, especially hearing 'But you're OK now' when we're struggling daily with issues. But that's what this forum was designed for ; to provide a place of mutual empathy where we all 'get' one another.
Not sure there's any more understanding for those with a TBI ; I know they get the same - 'Oh but you're better now' just like those who've had bleeds, Hypoxia, strokes or any other lasting effects of brain injury.
I do know that feeling of alienation. Soon after my discharge, and still fragile, I attended my uncle's funeral and a close cousin said 'I hear you had a fall but I see you're over it now ; you look really well' (I'd been blue lighted to hospital after collapse with a spontaneous haemorrhage).
The flippancy used to be hard to take, but I keep reminding myself how totally ignorant I once was about any type of brain injury, with no clue as to the lasting effects. My close family are well tuned to the issues, but we no longer dwell on it and spend most get-togethers laughing & joking.
I'm not sure I need anyone (or thing) to blame. I wasn't born with a written guarantee that life would be a breeze ! For me, it's just really bad luck and could have been so much worse.
Hi. Yes I feel your pain. I too have an AVM but mine hasn't ruptured so far. As others have said I don't think anyone truly understands about brain injury regardless unless they have been affected by it. I know its easier to understand 'it was caused by x accident' than 'it was caused by an AVM'. But that's because people don't know what AVM is. I seem to spend half my life trying to explain in words most can understand - and that's to loved ones rather than in general. Its very frustrating but is what it is I'm afraid.
Hi ye Wazza, I think we all have that question knocking around. I had a dissection of the vertibral artery, got to hospital quickly, was treated quickly, but have been left with an incomplete recovery. Yet I see on many A&E type programmes, people recover well with little residual effects.
There unfortunately is no rhyme or reason, just luck. I used to drive myself to despair, trying to find the answer. I still haven't found the answer, maybe just because we are special, and have the strength to handle it? 🍀
I am in a very different situation to you, but I want to offer my support. I know exactly how and why my ABI happened, (a surgeon chose not to follow mandatory procedures during a minor operation that had nothing to do with my brain,) but despite knowing all that, I still find it very hard even after more than five years, to believe that it did actually happen. It does seem to be generally true that people don't have a clue about brain injuries unless it has touched their lives in some way, and I get that. What I find really hard is when someone doesn't believe what you explain to them and some even think they know better! I had someone who reckoned that all my memory problems could be solved if I made lists! I have had several people question whether I even have a brain injury because I can speak in sentences and drive a car!
I wish I could say something helpful, but at least we have this forum and the Headway helpline. I don't know what I would have done without those two things.
Hello, My biggest downfall was my attachment to the trauma of my accident & subsequent SAH. I created a victim identity & prevented vital healing. My biggest gain was acceptance & then taking an all around well-being approach. I started meditation, altered my diet & gained mental clarity through the usage of intermittent fasting.
I found PSiO Glasses which helped control my fatigue issues & after 1 month I was free from medication.
My full diagnosis was traumatic subarachnoid hemorrhage, complex PTSD, fibromyalgia, suicidal ideations, anxiety and depression. I also ballooned to a massive 364lbs in weight.
Today life is very different, I avoid TV, we are what we consume & unfortunately there is some rubbish out there. I'm back in a gym after losing 112lbs in weight.
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