1 persons opinion of me thought I’ll be shiting in a nappy for the rest of my life and another persons opinion thought my brains progress is done… HUH my brain’s recovery is only just beginning!
Sure, everyone has a unique journey with their AVM.
I was fit and active in 1990 and then suddenly i was in a cabbage state, bed bound attached to machines. Yes i can now walk and talk again but I’ll tell you the journey is rocky.
I’m over 30 years post rupture, which surprises me but will I get to 50 years? Personally I think it is unlikely…
Tim
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Hey Timb,
I’m Merl from the Modsupport Team.
I must admit I thought exactly the same thing. My initial neurosurgery was back in '96 and the thought of ever reaching 50 was highly unlikely. Well, since then I’ve required a further 5 brain surgeries and here I am heading towards 60. I certainly agree the journey has been anything but smooth, but it continues.
For me I think a big part of my journey has been adaptation. Rather than looking at what I can’t do, changing my focus to what I can still do. My symptoms/side effects can vary massively day to day. Some days I can manage OK, other days it all manages me and no 2 days are ever the same. I have learnt I have to be super flexible to manage around whatever the day throws at me today. I have also needed to learn to read my body’s signs and have become super aware of those signs. Previously, I’ve ignored those subtle signs and tried to push myself along, but in doing so those signs become louder and louder. My body tells me “Laydown or I’ll put you down” if I ignore them further it puts me down HARD. Sometimes it can take me a day or 2 of laying in a dark, silent room to recover from pushing myself too hard.
As I’ve often said to others: None of this is easy and anybody who tells you otherwise has never been in this position themselves. We know this because we’ve lived it too.
Merl from the Modsupport Team
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