Fear of mental poor health

I advocate for good mental health at work. My school has won awards but I remain afraid to speak freely of my struggles at school.
Partly because I know there are people who use 'stress' as an excuse and they make it so hard for the rest of us.
What is true mental good health?
So often I'm asked how health is, most people are only referring to VHL. How many of us suffer with pain in the mind.
We VHL warriors speak of life expectancy and the next operation. We arm ourselves with knowledge to try and fend off the growing fear.
A good woman told me she is only evangelical about pilates and mental health. Yet I don't feel it's something everyone sees as important.
Despite the positive changes in its depiction in society today we still have such a long way to go.
Proof of this is that one strong advocate of counselling asked me to keep her own battle with anxiety a secret. I will if course.
I'm pondering this because of the irony that I'm speaking to Governors about staff well-being.
The truth is that it isn't our school alone that's making teachers sad, lonely, depressed, anxious and stressed. It's our government and the hideous climate of fear surrounding all.
There are no places to escape.

Booked

I did it, I've booked it.
Terrified.
I need to actually go this time
Don't I.

Why am I afraid of therapy?

I'm lucky enough to have a coach. I need it. She is a fantastic woman and sees, enables me to see. Even the uncomfortable truths and helps me accept many things that others can't.
Today she changed mode and she told me she was worried about me and thought I needed help.
The fear hit, the anxiety of therapy hit. Through her recommendation before I'd got as far as booking an appointment only to cancel it.
I began to cry (as I do now) as I thought of sitting in a room letting go.
I just don't feel I can risk it, I confessed. I can't collapse. I feel like it would be giving in. Letting the disease win. I'm scared of what I will say. I don't want to listen to the voice I've spent so long repressing. I push it away, down and I distract myself.
I admitted to her all of this.
She reassured me it wasn't giving in, it was a way to fight. That I wouldn't collapse but instead learn how to be stronger and I would be safe. It would be the place I could safely collapse and then they would put me back together.
I know I should.
I'm just so afraid.
I want someone to do this for me.
I don't like who I am much.
I don't see happiness.
I feel completely sad and disappointed in myself.
I'm losing but I'm lost.
There is no quick fix.

Sleepless and Ofsted

The alarm will go off soon. I've been awake for at least an hour. Things are sad here in my head.
I'll go to work today and hope I don't fuck up. My confidence is so very low.
I'm thinking of how to escape rather than change this morning.
My husband held me a few weeks ago while I cried and told me ' you're good at your job.'
I don't feel like it... I'm good at some bits. What's the difference between being challenged and told off. What's the difference between being held to account and hounded? The leader?
I find myself absorbing what I can but it isn't working.
And I am working, hours and hours of over time. I feel guilty if I take a night off.

Ofsted looms darkly on my well being. It seems like a cancer diagnosis. Hovering in the background, will we be told we're in remission or that there are tumours to be cut out, or worse a long poisonous treatment of chemotherapy...

I'm a leader, I'm not leading... I hope I'm not because I'm drowning and I don't want to take anyone with me.

Oh and I don't know my data back to front.

What is coping?

I saw an old friend this weekend. We hardly ever see each other, barely contact one another but we slipped into the chat. The comfort of someone who knows you so well, for so long. She's never judged me, well not openly and she could see, I think she could, that maybe, maybe I'm just not quite coping.
The not loving my job was the clincher, I suspect followed by the eyes prickling with tears at times.
We discussed the possibility of post traumatic stress and we agreed it was possible.
I cope, but am I always coping?

2017 with self made family

What a lovely pleasant affair we had this New Year.
It would have been improved sightly if three women I love had made it to give me a kiss but they couldn't. One for reasons of travel fun and one for boring flu based reasons, and one because I didn't invite her.
But I saw other women I love and I felt very happy, all evening long.
It felt like family, because it was and because it was with newish lovely people who feel like my family.
I would very much like an uneventful 2017, one where I gain head space and get to be very ordinary. I know I need some calm, peace and quiet.
So my New Year resolution list...
Build happy memories with those I love.
No health scares for me or anyone else. No big decisions.
No change.
More of the same.
I'd like work to feel purposeful but not all consuming.
Most of all I would like my little girl to be happy and feel loved, all the time. She is my most important bit of family. She is what counts.

I think I need you

Tonight...  I think I need you

Feminism finds itself trapped

Tonight I sat speaking to a woman who I have a peculiar respect for. She is woman who dances between power and weakness.
As with many of my encounters this exchange was about me.
But... We discussed and conversed. My step father in law demanded my glass, he flicked soap suds on me. I was mid conversation. Still he flicked. Still I refused to yield my glass. He was frustrated.
So was I.
I was faced with a man who expected subservience. He wasn't going to get it
Merry Christmas

Easier to be terminal

As I sit listening to the songs of Christmas eve I find myself envious of those who know their fate.  I have forever sat on the cusp of death and life. An uncomfortable place to spend your days. But sit here I do.
I'm loved. I rejoice in that.
I'm admired, I'm proud of that.
I'm independent, I rely on that.
I'm so close to an end. I assume that.

Christmas

Another one. My little girl is excited and that's the important bit. I think, all things considered though that Christmas just won't ever be as good as when I was little.  This proves how happy I was. I really was. My early childhood was the best. We weren't rich, we lived in a small home with a yard, we didn't eat the best things and I didn't have loads of friends but I remember being very happy. I loved my parents, I enjoyed school, my brother and sister provided me with a great balance of fun and fear and we had a great dog.
I was so very happy.
Memories of kicking the bunkbed above, playing and smiling, singing and celebrating.
Occasions like Christmas were all about anticipation and joy.  The routine of it all was so much of joy. Wanting something for so long and then getting it (or the closest version my parents could afford)
The tradition of stocking, church, sherry, gifts, food, playing, gifts and TV. Always that order, always great.
I don't have that any more.
I miss the traditional way and I know I'll never get it back.
As my always foretold... Everything passes.

A pretend friend

Recently I've been having a hard time at work. I've had to adjust my trust radar a few times.
I trust easily and 'over share' and that often means people think they know me very well. In turn they tell me things, I know a lot about people very quickly.
I'm thinking of all of this because there has been a new face at work, she posed as a friend but I get the feeling it was far from real. She used me.
I trusted, but now I am dumped.
I could be wrong, perhaps this is normal behaviour for her in friendships but it isn't for me.
Trouble is I could have done with a friend at work, someone who I could get support from. I've been struggling to be strong at work, to be in control, to care enough to be good at it. A friend might have helped a bit but she didn't.
Luckily I have a couple of people I can trust, and a few more who trust me. Can see the current me is weaker than normal and needs a bit of space.
More importantly I have real friends outside of work who are helping me get through this rough patch. Ones who check in, who keep me focused on what is important, who tell me their great news, medium news and bad so that I feel part of their lives and know I'm not alone.
I'm a mess inside. Work used to be my escape and it no longer is, well not all of it. Those great classes, who love to learn and we have fun together, they are an escape. In fact no matter how shitty things get, a great lesson can make those spirals of shame, fear and loneliness pause and retreat.
Her falseness is troubling me. I wish I could let go. I don't know why but I'm guessing it is connected to trust. To feeling used. It's all fine when you're needed.
My true friends are there no matter what.
I hope I am a true friend. Maybe that's what I'm troubled by; could I have been that false.
Yes. 

Letter to my little girl

I'm not sure if I've posted this before but I was tidying up my dropbox and came across the letter I wrote to her, to keep if the worst happened. 

I wrote it in 2013  - must have been the kidney one. 

It's here if she needs it... I really hope she doesn't. 

I'd have written this by hand but I'm not great at spelling and I want you to be able to read it.

You are the absolute best thing that ever happened in my life and you brought me joy in so many ways. I hope one day you know this joy, and then you'll understand. I want you to know that if I have any choice at all I will be with you and I will always love you, I am in your skin. I am so sorry that I left you and so much wanted to see you grown up.

I don't want to decide what your future should be and you shouldn't live your life wondering what would have made me proud. I hope that you are a good person of course and I hope you live well. I trust your dad to help guide you and keep you safe. There are a lot of other people who will be there to support him and make sure he does. He's a great man and the best dad I've ever known. Maybe you will end up looking after him. He deserves to be happy, he should have another relationship. So should you.

I can't decide if I should offer you words of wisdom. Will you treasure them? The problem is of course that I don't know what situations you may find yourself in and so advice could lead you the wrong way. But this is what I think… I hope that you trust yourself enough to make good choices and to be mature enough to resolve them if you don't. Learn from your mistakes, everyone makes them - try not to make the same one twice. Take some risks, don't play it too safe. Try hard, make an effort, most things that are worth anything in life will be hard work at times. Read a lot and read widely and don't believe everything you read or hear.

I hope you are both happy and that you remember me, but don't be too sad about it.

Baby girl I love you so much

I hope the diary shows you we had fun… we did. thank you for being you and being my squidge pants. 

Pride in my latest list

I got a letter in the post today, 5 months after my clinic and I got my VHL list through.
I love reading my list.
You might think that strange but for me it is a badge of honour. It represents my struggle and as today I read it, in my kitchen, busy rushing around to empty and immediately fill my dishwasher, make tea, clean the kitchen up a bit, put tissues in my school bag (I've run out as I have a cold) entertain my child and get her to bring her washing downstairs and put on a load, I read it and felt proud.
I'm proud of what I've recovered from and aware that some of the buggers on the list will need intervention one day.
Pleased, of course that only one of them has grown.
And I'm proud enough of it to share it... I think sometimes people forget how great I am! The lack of modesty in this prickles me slightly but it is true. I know some strong people, mainly women.
I want to raise a strong woman.
So I put a picture of my list on Facebook. I want people I know to see it and think, fuck me that's a lot of tumours. She's amazing.
Because I am a VHL warrior.
Hear me roar.

Depression

I'm not depressed today, I'm just really pissed off.
But I think I was, I think that the feeling of despair was one that took me over.
I think I was depressed because the joy of life doesn't last when you're depressed.

It's like sunshine on a cloudy day, you feel it but never enough to actually keep you warm.

The sadness that covers you, that creeps into each day.

And then I get really cold, that way you don't feel anything. I've just been lying here and knowing that I'm just not feeling. 

It's easier. It hurts less. It means I can move through each day. 

My husband loves me... I think he'll always be there if I need it want him. I really hope that that is true. 

And so tonight I don't want to sleep because I don't want tomorrow. 

The end of the world

Today Trump got in, it's frightening.
So much of what is what I hold dear... In danger

Flash backs

I wasn't sure if that's what was happening, but I think it must be. For most, flashbacks come from a traumatic event. Maybe there keep seeing the car crash or see the blood but my ones are of a time when I just couldn't see very much.
I flashback to the bed, the dull, the feeling of uncomfortable agony and hideous nausea, dizzy sick, useless horror.
And now I'm here... In this life that is completely fine.
But so often I want to scream at the world, fucking stop.
Stop and see...
Just stop with the trivial bollocksing shit you spew out info the world.

I don't of course, I tend to smile and ask if there is anything I can do.

Grrrr

Bout

https://scontent-lhr3-1.xx.fbcdn.net/t31.0-8/fr/cp0/e15/q65/14876544_1323289851035448_6522981114112102614_o.jpg?efg=eyJpIjoidCJ9

I hurt all the time

It's about finding ways to not feel it.
And when work was good and fun that helped.
When my child is happy, so am I.
When I'm distracted by brilliant friends, their unconditional love dulls the pain, some times a lot almost so much that I think I'm free.
There are other ways, jigsaws, flirting, roller derby, well the last one provides physical pain... My healthy form of self harm.
Sometimes I let drink do the work but it never works. I'm lucky it hasn't.
Work, work was the key and now that feels like shit too often.
Work was fun, hard, challenging and extremely rewarding. Frankly consecutive governments have been destroying all that and it's not just me that is feeling it.
So where as I could rely on my job to mask the pain I can't now.

Roller derby come back bout

Less than a year from my last brain surgery and nearly 3 and a half years after the first time I did it, I'm about to take part in my wreck league bout.

My skater name is Cortisol Crisis, in honour of my lack of adrenal glands and my number is 999, to reflect on the NHS.
It's been over three years because VHL keeps getting in the way. Kidney cancer first, so post surgery I wasn't allowed to skate and certainly not to scrimmage for over a year. Brain surgeons not do fussed, the skull and take more!

And I'm proud of myself.
I'm back.
I'm not as fit as three years ago but I think I'm a bit better at staying on my skates.

Dad's reawakening

The fact that he hasn't done anything for so long means that I find it truly amazing that he decided to do more.
And in true style he got on a boat and was hoisted up, wheelchair and all to the crows nest.
Yup
That's the most recent thing.
I've no idea what he'll get up next but for the first time in a long time I think I recognise my dad. The one I lost about 10 years ago.
He's not completely back... But he ain't dead either.