Thanks world!

Right so I'm usually fairly ok with all this stuff that's happened right? I mean, whining doesn't get me anywhere. Now that that's out of the way...

Everything was so good; my friends, uni, I was getting together with a girl, and I was planning my life to work in a neurology department. I know that sounds generic, but I was excited.

Now a stroke I can bear, strokes suck, but I got off fairly light. But the reason for it I do not find ok. Having a death trap installed inside my head is something that isn't acceptable. For those who don't know, I have an AVM in my brain, which is basically bad blood vessels that can burst at any time, killing you. There's nothing you can do about it, it'll just happen for no reason. It's an extremely rare condition, and most people go through their lives with these things in their heads and nothing happens.

But me, at the age of 20, just so happened to fit in all of those categories. Not only that, my AVM is huge and diffuse, and thus inoperable. I had gamma-knife surgery (basically radiation) to scar the veins so no blood can pass through them, making it no longer a problem. As I say, mine is huge, so this working is not 100%, and it takes years to work.

Then 6 months later, just I was starting to hack it, I started having seizures, and not just a few, I've now had 8 within 10 months. The medication I'm now on wipes me out, coupled with the stroke, and the fear of another one, is just something I can't get my head around.

What's worse is that telling this all to you won't do anything, it'll still be there, the stroke still would've happened, and seizures will still plague me. You tell yourself; "Suck it up, there's nothing you can do." or "Other people have worse than you". The problem is, I don't care. I find no comfort that the world can give people such crappy conditions worse than mine.

It feels like my life has been stolen before I really got to start it properly. I'm not much of a complainer, it won't do anything, and I will get back to it mind you, but in this moment, I just need it to end.

15 Replies

  • Not easy to comment on this, don't want to sound patronising but this is the place to vent those frustrations, I'm sure if we are all honest we feel just like you, I would just like to wake up and feel normal, but I'm lucky, I've got the family and had the career, I do feel for everyone who is fighting to recover, I wish I could wave a magic wand xx Janet

  • Yeeeeeah it's just nice to put it down.

    We're all in the crap I guess.

  • YEP! one way or another

  • I hear you Ben. I really do and it makes me so sad. :-(

    Is it partly anxiety about your results ?


  • Don't be sad, it's cathartic! I get what you mean, and thank you.

    Yeah, a bit, but the situation strikes me at times, that's all.

  • I am really moved by your story, I think I can understand your thoughts that you find no comfort in comments such as people have worse conditions than yours, you've got a crappy condition and that's it. I can hear your anger, and it is god that your aware of how you feel, other people are not in this you are.

    It is is good you feel able to say just how you feel on this site. Do you have anyone or a group that you can talk to about how you feel?

  • Yeah, my friends/family are great.

    But they didn't have a brain haemorrhage, if you catch my drift.

  • so teach them

  • I think you are fantastically brave and your posts are really positive. It is totally normal for you to feel this way, anyone with the same condition as you would feel the same. Keep up the good fight :-)

  • I can sort of relate but I never reached that phase of my life and I've grown up not having experienced the normal things others have. I'm giving my life one last push to show itself, I was once 20 like you, now the years have trickled by and i'm still no further along in finding my life. I can't find anyone in the same situation as me.

  • needing to vent is normal...we are all pretty stuffed in some way or another. My injury changed my life forever, but basically it is a "what is done is done situation" and there is little choice but to adopt the "suck it up sunshine" approach and get on with it the best I can...

    BUT If I was in the position of having something hanging over me I like to think I would try to live each day to the fullest, cramming as much into it as I could...

    In reality I would probably do that 50% of the time and the other 50% I would hold the most spectacular pity parties the world has ever seen.

  • I am new to this and have read through your messages your writing it down comes across as the best way to vent your feelings on a site which has people with the same or similar situations.


  • HEY

    Thanks people, it was just one of those days like.

    I'm chirpy today, it's all just a nice, learning experience :D Who wants normal anyway?

  • I highly recommend doing that occasionally by the way, seeing it written down means you can do something about it.

  • im so sorry to hear of your story , my aneurysm wasnt detected till it burst n nearly killed me, aftr 6nalf hour op i cme round n was so gratefull to be alive, which i still am , but this has caused me 1 stroke in hospital , 2 mini strokes since, n epilepsy i tke all differnt tabs fr my heart n also im in the middle of chaning frm 1 lot of anti fit tabs to another lot ,i ave lost lots of weight since , but wen i 1st joined here everyone sent me their hope , which i used to think was just a word , but now i know tht without hope i cldnt cope ,i gt depressed n down but its my hope n eveyones on ere tht gives me the strength to carry on , so im sending my hope to u at this time n hope it helps tke care .

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