I've been looking at photos from the past and trying to remember where I was in them.
The easy days I suppose, when you didn't think very much was significant.
I enjoy seeing how so many people look the same, I seem to always look the same, my face a little less round and my belly a little bit more round.
And a few minutes ago I saw a message on Twitter and it was a sign from a man on a ventilator - he'd written 'I'm not giving up' and I cried. I know that feeling and I know what it looks like to see it on someone you loves face. I also remember the time in that hospital bed when I told my mum I was giving in, I couldn't do it anymore. I couldn't try and more. I closed my eyes and told the universe I was done. My eyes were already closed and I thought that maybe that would mean the horror of what I was feeling might go away. It didn't and I endured. I kept feeling and I was saved.
I've wanted to give up so many times in my life, you're not human if you haven't. I am happy to give up in a Frisbee game and when I know my Yorkshire puddings have failed spectacularly. I've given up on thinking someone will love me, I've given up on people who have hurt me too much, although not often. I'm not giving up on much else. I almost gave up on teaching, I nearly left that but I'm so pleased and grateful I didn't.
So I'm not giving up on the idea that this school will survive this, that we will survive this. I'm not giving up on hope and life and I'll hold onto the knowledge that I am strong and so are those I love.
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, April 25, 2020
Thursday, April 16, 2020
Tension is high
Navigating emotions when you're stressed and tense is hard.
I take cortisone replacement steroid because I had both my adrenal glands removed. I do have a tiny but that was left behind and over the years it has shown it can cope with quite a lot of stress.
We all have our ways of coping with stress.
I just realised I forgot to take my tablet this morning.
Done it now!
I realised because this morning I have been doing part of my job, that is helping the staff of our school through these difficult times, helping keep others in the loop, trying to balance need and emotion. And I felt my arms tingle. That is a sign that my cortisol levels are low.
And it's stress. The stress hormone.
I take cortisone replacement steroid because I had both my adrenal glands removed. I do have a tiny but that was left behind and over the years it has shown it can cope with quite a lot of stress.
We all have our ways of coping with stress.
I just realised I forgot to take my tablet this morning.
Done it now!
I realised because this morning I have been doing part of my job, that is helping the staff of our school through these difficult times, helping keep others in the loop, trying to balance need and emotion. And I felt my arms tingle. That is a sign that my cortisol levels are low.
And it's stress. The stress hormone.
Monday, April 13, 2020
I never even got to say goodbye
A cliche line from a film.
A regret.
A common reality.
And now, even more than the everyday. At least, it's now more public.
I think about saying goodbye. I'm not sure if I'd want that. To be so certain and so sad and so final.
I want the last moments between me and the ones I love to be much more of a see you later. Because even though I don't know what I believe to be the next phase of life. It shouldn't be goodbye, it's got to be see you later.
Tuesday, April 07, 2020
Keep calm and carry on
I'm trying to control what I can, think of what I can control and not let myself dip into fear.
Some days it's harder than others.
All this, the world is aware of all the things they hold dear.
I'm keeping busy.
Online lessons, thinking of things my students can do from home and trying to balance the fun and keep the pressure low.
There is lots I can do, lots I will do.
I miss the teaching of actual children. My usual place of solace when I feel lost.
There has been a death of someone in our community and the tragedy of this can only be made good if it encourages everyone to be safer, take this all more seriously.
Some days it's harder than others.
All this, the world is aware of all the things they hold dear.
I'm keeping busy.
Online lessons, thinking of things my students can do from home and trying to balance the fun and keep the pressure low.
There is lots I can do, lots I will do.
I miss the teaching of actual children. My usual place of solace when I feel lost.
There has been a death of someone in our community and the tragedy of this can only be made good if it encourages everyone to be safer, take this all more seriously.