I'm drinking wine, on my own. At university that was a no no. Now it's very normal.
I've had a very mundane day. And I've liked it. I've kissed my little girl and had lots of cuddles.
I'm watching Netflix and I'm a bit tipsy.
This is normal. Yes?
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.
Saturday, May 26, 2018
The mundane truth
Saturday, May 19, 2018
Things are different... I shall add as we go along
A question I hear in my head often is, why did we come here. The truth is always: "many reasons."
Each one of those reasons would be enough and each of them is the only reason at some point.
Now we're here and in just a couple of months we'll be taking a trip home to Blighty and I suspect some of the reasons we could have stayed will make the following August a much harder trip.
But Africa, my piece of it is very interesting indeed.
There are many small things that make it different.
I intend on adding to this list.
The weather...
Watching out for stupid goats on the road
The crisps aren't very nice
We don't always have power
It's big
There are lots of holidays
No need for heating in the house
Selling live chickens on the road side
The creapy crawlies in and out of the house
Sitting in the sun most days
The colour of everything
Seasonal vegetables and fruits
Having to the malaria kits and treatment with you on trips
The lake
Solarising water
Seeing poverty
Newspapers
No NHS
the language
Price of gin
Clothes shopping
Carrying things on the head
No TV
Having staff
Dust
Babies on the back
The colour in August, spring
Fucking huge spiders and lots of them
Winter being cold
Mosquitoes
Wednesday, May 16, 2018
Poorly but fine
It's odd feeling ill somewhere very different. But easier to stay in bed as the pressure to get into work isn't any way near as acute as the UK.
I'll go and teach my year 7 but otherwise l will rest.
See if I can get any sleep.
My little girl was worried, it's hard for her. Her mum in bed brings back too many horrible memories. I can see the concern all over her face. Only thing to do is stay alive.
As obvious as this is to say, I do so hope I don't need any surgery for the foreseeable future. For her as much as me.
Friday, May 11, 2018
Each time I cough
Now I cough.
However I now do the later more.
So hidden, my quaint disability. I'm struck that it's so survivable. Well at the very least I've survived. And so has my dad. Not my brother.
Today I took a step back into the path of a career I had been so very certain of. Without knowing it the growing number of hiccups meant I couldn't be who I assumed I would be in that role.
And now I am feeling that despite my ever lasting odd cough I'm more myself.
Wednesday, May 09, 2018
What makes me happy?
On Monday I went to first Zumba class. Unlike my ridiculously fit and capable friend, who bounced the whole way through, I look it fairly easy.
As I shook and stepped and laughed at my lack of coordination, I was reminded of how different life could all have been. Of the brilliance of the human body to recover and cover up. Who would know my knee hurt. Who would know my arm tingled away. Who would have believed that the woman who lay in a bed for three weeks would now be grapevining her way across a school gym in Africa.
That I can laugh at myself and find joy.
I am finding the joy in life. My confidence is growing.
I am often happy.