It isn't easy to explain the importance of the anniversary of surgery, but in simple way it is like any anniversary, birth, death all.
It reminds you that time passes, that you've overcome something to be where you are, that the next year might be better. Anniversaries give you time to reflect.
I'm a bit depressed at the moment, I'm finding it hard to get out of my own head. That seems to be exacerbated by what I went through this time last year.
I'm sat with my child and today we have cuddled, talked, eaten together, gone for a walk and to the shops to get a treat. This time last year I couldn't move, open my eyes or eat without feeling so unpleasantly such and dizzy that I would rather someone would have been able to turn me off.
I didn't want to die, but I didn't want to be conscious. I was desperate for it to end, I felt so terrible that I couldn't stand any second, I was unable to sleep and I needed sedatives to even allow others to move bed.
The contrast is extraordinary.
I should be delighted.
And part of me is.
As she sits there now, both of us being quite normal I feel partly content and yet acutely aware of the potential of it all happening again.
I'm a survivor.
An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.
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