not VHL a different disability

I recently explained to teacher

'if you're dyslexic, it's always about dyslexia.'

I don't know if he got it. 

I'm high functioning. The most obvious part to those I work with is my spelling. Some people don't get it.

Tying my laces 

Reading the time from a clock

Remembering a short conversation

Time

Timetable

All sorts... If you don't get it, you don't see it. 

If you don't get it you don't see how much we adapt and learn ways to thrive

being with fellow know how it is peeps

 I had pizza with a pal last night who just gets it. She and I both have a disease that means results day is always more of a  - can I live my next 6months roughly the same as I just have or maybe a bit better?

I am going to miss being there for her face to face and I'm going to miss her laugh. She laughs with her whole self. 

What's great is that we do still find ways to laugh and it means the world to me.

cat's out the bag

 the news that we are leaving hasn't gone down well. Which is nice. Some tears and some expressions of sadness. Not all mine 

Perfect day

 toady I got up and made myself a cup of tea, and then I finished a jigsaw, made a fried egg sandwich and then did a bit of tidying up. I sorted the water and  brushed my teeth. I looked at social media and posted about why  today mattered. I had a cuppa with a friend, I worked on some stuff and made myself a crumpet with marmite (a real treat) I helped my daughter with an application and I kissed my husband. I planted some seeds and planted out some seedlings. I washed up, twice, maybe three times if you count the little bit in between. I walked around and I smiled. I contacted friends and I watched something on Netflix. I made dinner for my family. I had a bath and scrubbed my skin and washed my hair. I'm typing this now, still smiling. 

A perfect day because I'm living it, unaided and full of gratitude to all the people who made sure I am here. It's my 7 year craniversary. I don't remember the date of my first brain tumour operation. I know that one was in January. I saved the date of this one. It really was a frightening time. I went into that operating theatre not knowing how I would come out, who I would be, even if I'd be alive. Not the first time, but this time, I wasn't sure if I wanted to be alive at the end if I was going to stay the woman who couldn't move for fear of the consequences, who would have given up completely if it had been possible just a few days before, a thinner version of the person who had been admitted 3 weeks before, a person who wasn't sure if she liked herself. 

And so today I'm allowing myself to be happy as I do most days now. I'm lucky.