You've been a strange year.
In 2017 I've been at an all time emotional low and felt like my life was destined to be rotten. That I was rotten.
And I'm about to host a party where over 30 people I didn't even know 5 months ago are coming to celebrate moving into 2018.
Who knows what the next year will bring but this year has proven I am a warrior.
Happy New Year.
My husband and I binge watched a harrowing TV series this week. In it hugs were mentioned, used and perceived in various ways. It had to be deliberate. A hug, so innocent and powerful, and creepy.
It's only a few years old but already dated.
Hugs for boys and hugs for girls.
Hugs for comfort.
Hugs for memory.
Hugs for plot.
And as I watched, crying silently and feeling the closeness of grief my husband asked why I watch if it makes me depressed.
"It doesn't make me depressed."
"Wrong word."
"It pulls up the saddnes. I feel sad."
And a moment of truth sounded.
"I'm this close to saddnes all the time."
And unsaid... That's why I have to keep busy, that's why this helps. It's controlled.
And the hugs got to me. And another penny dropped.
My dad can't hug me. I don't remember the last time we did and when he could.
We hug him. Gently and carefully because it can physically hurt him. This fucking disease has stopped my hugs with my dad.
How do you write about them?
My boys, the ones who got mixed up in it all.
One definitely missing and one definitely dead. My boys.
I wish I was still able to try and be part of a solution. But what a joke. I've got more chance of saving Malawi.
I think of them and I worry about them.
Here I can do nothing.
My boys.
The panic has subsided, a problem shared! The pins and needles isn't daily and most likely more about a stiff neck due to exercise. But I'm still a bit worried. The NHS feels very far away.
I haven't had a reply from anyone about MRI scans here and yesterday a colleague was complaining about the terrible insurance we have.
I am good at pushing this all to one side. My significant other is the world champion.
I'm considering applying for a job. I'm unsure if I should. The current lack of work stress is nice. This would potentially change that.
But VHL has its own way of making things stressful and for the last few days I've kept that all to myself. Until tonight. Tonight I confessed.
In the safety of his arms and while we were being honest I told him.
I have a new symptom. I'm scared. I want to be in the safety of home. It's not my imagination. This could be serious. This could fuck everything up.
And I cried.
Then we talked strategy.
Then we looked up neurologists in Malawi.
Then we looked into the medical insurance.
And then we had a beer.
Who needs the use of their arms?
Me, me, I do. *puts hand up in the air.
I'm not going to post this straight away. But I can't sleep.
I've let someone I care tremendously about know this blog exists and he's reading it.
I can't get to sleep for all sorts of reasons but it started because I drank too much and I miss my brother.
My daughter was asking about him today.
I can't know him anymore. He's almost been dead as long as he was alive but as his little sister, well, that passed long ago.
He knew me before I knew me.
He'd seen and understood what my feet were long before I stood on them.
He shaped me without intending to. He was my big brother.
I wonder if I seek that gap out.
And I'm sad. I miss who he could have been.
A simple question. Because I'm a to be. No matter what. I've considered the 'not to be' talked my way into the who would hurt. How should I do it. That was before my brother died.
You'd have to be the most heartless person in existence to do that to your parent's twice.
No, I keep on with the to be.
Despite the agony.
A common dad joke, anything to do with hearing and my dad would always say, Pardon?
He can't hear at the moment.
Pardon?
Yes, you heard me. He can't hear. No hearing. Deaf.
Says he'll learn sign language.
I guess we all will too.
It's not clear why he is deaf. Old age, the gamma knife surgery, wax...
The hardest thing is that one of his all time joys is listening to music. His life is already so limited. Watching a film, listening to music, hearing. This really isn't fair.
This hash tag has come at a time when I am strong enough to own it. Oddly having just experienced another incident. A drunk old man. The shock was such that I froze and I found myself right back to the self blame, it's what I do that makes these things happen.
I was too nice to him
I didn't say no
I didn't object to his obviously flirty behaviour the first time I met him, I smiled
But the impact of him grabbing my face and kissing me on the lips and then later grabbing me again and kissing my neck was fear. When I got home to the safety of my husband I cried and cried.
My list is long and as I read other stories I recalled so many more.
They often only last 5 seconds, the cat calling. If you don't smile it's normally followed up with a 'bitch' or other insult.
"Smile sweetheart" just as creepy
Then the slightly longer, having your neck massaged by a man you barely know. Most memorable at a wedding
Being touched when you're pregnant, like you're public property (women do this too but most women ask)
Being grabbed by two men while another shoved his head in my cleavage.
Bum grabbing, very common in pubs and clubs
Thighs felt
Being given drink after drink, tipping them away, saying no... Being walked home, trying to kiss me despite saying no... More than once.
Being touched on the vagina while being given a piggyback
Being raped
And more
Seems VHL isn't the only thing warriors fight.
The man I knew as my dad as a child has long gone.
For a while a shell existed where he has been.
I think though that this new dad is really rather wonderful (most of the time)
He, while strapped to an expert, jumped out of a plane two days ago. Lost a converse trainer but enjoyed it.
Why? Why not.
I explained to a new, potential friend that he started really trying again when he saw that I could give up.
I was very close.
That month felt endless.
I knew I could be a shell too.
I have it in me.
But I was saved and I live again.
So does he.
It has to be these big, larger than the disease, events.
He can't dance, so he flies.
I love my daughter, she is our surprise and delight.
I wanted more, I don't admit that often. No point.
But I get a pang of jealousy when I see the bundle of happy faces in pictures or in real life. I know it would be harder but I wanted a noisy family. We're a very controlled and happy 3. The magic number.
It's on my mind that even if I were to have more it's such a reckless thing to do. I'm almost 40. I'm diseased. Yesterday my husband almost didn't get the condom on in time.
I feel sad that it was the fear of the health consequences that have left me in fear and a secret part of me, ever so slightly thinking, ah but I'd have another one. Then I push that away and cover it with the facts.
We'd have to leave here. It would be a logistical nightmare.
My little one has her first day at her new school today. She was excited when she left but a little overwhelmed by it.
The reality of us being here hit her. I could tell she was bothered by it.
Eventually she let go and cried. Real tears. She misses the familiar and her friends.
I miss mine too, I miss knowing I'm close if I need them.
To go from being in charge of so much, to now so little is strange and healthy. Yesterday I happily finished a meeting and went home, cooked, listened to my daughter read and had a relaxing early night. I've read books, done a bit of prep but just enough for now.
The internet is so slow there isn't really anything else to do.
It's surprising but the lack of stress and tension is the best part of this change.
There is some, but that's so much more about where we live and getting used to that, but once we are, well time will tell.
So today I go off to be a new member of staff, not in charge of anyone really. Just the students and I'm told they are a delight.
Freedom from the last year and a chance to start again. I'm privileged in so many ways.
And here we are, a few stressful moments but 3 days in it feels good. Feels like the right choice. Live each day.
Some of the worries have dissipated and I feel happy.
Happy in a way I haven't for such a long time. Not the extravagant happy that I've felt. Not the guilty happy.
This is the happy I've missed. The soft curl in your mouth because a bit of you feels genuinely content. The base level of happy that keeps you safe and warm. The opposite of depression happy.
The no frills, comfortable happy that I took for granted, until I lost it.
It's a fragile happy still, is doesn't have it's strength back.
But if I nurture it, it will.
It's never comfortable for my dad to travel these days, it's hard for him to get about but he does it anyway, when he can and for a good reason.
He came here yesterday with his carer, made it up our steps, with help and we had the lunch I had made.
He told me he loved me, how proud he was of me and how sorry he was he had given me this disease.
He explained how he feels he is deteriorating still, that each time he gets ill, he doesn't fully recover.
He was saying goodbye.
It's another year and another achievement. Getting here.
According to that fateful letter I've got 13 years left.
Better make the most of them.
My birthday also showed me how loved I am and how I've learnt to keep amazing people close by.
I'm a lucky woman with an unlucky disease.
Term is over, and so to is my time at that school.
I left with a sadness and sense of defeat, I felt a bit lost and, although loved by so many, there were key staff who made me feel completely disposable.
While there I did so much, helped so many and because I didn't have quite the same vision, the same sense of urgency I was rejected. That's how I feel.
Three years.
I expected to be there so much longer, I felt part of their #family. Until I was clearly the black sheep.
Lessons I should try and learn, (but never seem to,)
1. don't rush back after surgery. For a while, people are impressed, but often, if your pain and disability aren't seen, then they don't exist for others.
2. Be careful who you trust
3. You're forgettable
4. Your leader needs to be morally aligned to you.
I'll grow from it.
Now I need to wash that away. Move on and be grateful that I could make the difference, I did.
Next adventure.
My little girl turns 10. She is my joy and my heart.
When people discover I have VHL and that it's genetic they often ask... And your daughter?
The relief I see in their face is sometimes overwhelming. 'I know' I say. 'I'm not sure if I'd be able to cope if she had it'
Or my other response 'we had her tested at 3 months, best day of my life knowing she didn't have it'
Which leaves me thinking how awful it must be to have children with it, and reminds me how awful it is to have it.
I'm bargaining with fate, asking for 2 years please, is that so much to ask. Two years of tumors control. I can't even ask for tumor free. That's not something I can ever hope for.
I'm a defect after all.
But if the universe could give me the next two years (four would be fabulous) to have an adventure, to treat myself and my family to a break from VHL, that would just smashing, thanks.
What will I give in return?
To not feel alone, no one really is anymore but when you see others with the same disease with you share you know you're not alone.
But today (and others) it doesn't seem like a good plan.
I don't want to see the potential problems today. I'm fed up with the constant struggle I find myself in with the never ending fear of 'what next' what else can go wrong.
We're trying to escape...
I might silence those for a while to help me do a better job of pretending everything is fine.
All is fine.
That's me
Flawed
At a cellular level
Moral too
Aren't we all
I fight an inner struggle that I imagine is familiar to all of us who have the privilege of wealth, comfort and time. I don't like myself. I don't like the way my body fucks me over.
I don't like how much I dwell on the negative things I do and say.
I'm struggling to forgive myself.
I'm struck by how much of my past impacts on now. I'm so desperate at times.
So sad in others.
I find myself angry very often.
Near to tears the next.
This years clinic was a good one. Perhaps the almost the best I could have hoped for.
Two new tiddlers in my pancreas. So far untouched but now they add to my list.
I'm fit for work.
My father needs gamma knife.
Easy
I did the usual optimistic posts and messages.
But it's the hidden fear that it evoked, more, my list grows, more, two new ones to watch, more, worry, more, more, more.
Each hiccup, each twinge, each sensation reminds me... Life limiting.
And it being just the three of them, it was bound to be a good day.
The VHL clinic went well. A couple of new tiddlers in my pancreas but no action required. Dad is likely to have gamma knife on a brain tumour but that's a caution thing.
And this means we can go, we can go on our adventure.
Dad doesn't need me in the country for gamma knife. That's one of the easy ones.
I can't help it.
I'm trying so hard not to but worry I am.
The unsteady feeling is creeping in, the doubts and fears.
I'm worried.
I'm in Angel
Travelling home in an uber. This place holds lots of happy memories and many bus journeys. It seems to have a draw.
Annual MRI. This year it means so much, so many years it does but this time our dream relies on this being 'normal' for me.
No growth and no new ones please.
And if there are any changes they are very much... We'll keep an eye on that.
Grow slowly
My coach used the phrase 'life limiting'
Am I puzzled by this.
I'm in the hospital now.
I was bored at work today. Not sad, or lacking confidence. Just common or garden bored.
It's quite nice
Recently I went with my daughter and a friend to Go Ape. I hadn't considered I'd be afraid but as we moved onto the first off ground activity I was filled by with trepidation... The rope ladder.
I've had anxious dreams of these, clinging on swinging and afraid.
As I was suddenly faced with this reality I gritted my teeth and climbed. Not as bad as the dream but unpleasant. I did it for my child and told myself each run, I don't like this. I don't have to do this, I'm not going to keep doing this.
I did, of course and I climbed the next 8.
The reward was experiencing something special with my child and the zip wire at the end of each section.
This week I've had a similar experience of this trip. Elements of it have been less than fun.
It's made me realise how much I like to do these things with people, with my family.
A number of firsts for me over the last 24 hours.
- flying on my own
- riding in a golf cart
- watching men play golf while sipping lemonade
- being in a Country Club
None of this would be happening if I'd even been 10% more content at work. If life hadn't gradually started to make me feel sad, most of the time.
Make lemonade
We're making a big decision but I'm so nervous that medically I'm going to be stalled. How do people do the thing where they know they might not have the right medical insurance.
Week
I went to the GP and was prescribed happy pills. They have not made me happy. I was sick most of the night, didn't sleep and felt more anxious than ever.
So that isn't the way.
I'm feeling rather lost now.
I don't know what to do. 4 months left at work. I can do that.
Right?
The day consisted of, morning fast, lying down, bloods, lying, more bloods, tablets and lying down, bloods, food, bloods, bloods, bloods and one more blood and home.
I filled the time and watched dreadful day time TV and doing a bit of work, some reading and podcast listening.
Because dad and I are regulars the staff asked after him and we talked about me a my last stay.
The smells made me think of last time I stayed there, almost 2 weeks maybe that long.
The staff, they have cleaned away my shit and sick and wee. They have seen me at my worst.
On the way home I saw lots of posters saying 'Wear a Hat' day. It caught my eye.
What's that for I thought, then I spotted the corner.
Brain tumour awareness.
Oooh, I thought, we could wear a hat at my school.
Oh no, I thought, that's too self centered
How sad, I thought, no one will do it for me.
In so many ways.
I feel very broken right now.
My little girl keeps me sane but so much else is pulling me apart.
A podcast I listen to has people openly talking about the darkness and shame wells. All comedy. All true.
I feel guilt physically, even when I haven't done anything wrong. And if I have it feels like it consumes me. I so want to do everything right. Get it all right so that I never get in trouble. That I'll have nothing to confess. No sin and then no punishment.
My adult a logical self knows that the bad things happen anyway. But my inner child is absolutely convinced that I can control it. By being good.
And yet I make mistakes and I sometimes almost choose to do the wrong thing and even actively choose to sin. Tell lies. I tell many lies. I lie and lie and lie and yet I am very truthful. Overly truthful, I over share. I talk about myself a lot. Often. I crave that to.
Today I don't like myself.
Today I am going to try to value myself.
Even though today I can't understand why anyone would love me.
Today I feel like a failure.
But I'm able to fight, a bit.
If I didn't give up when I was lying in my hospital bed then I won't give up now.
I took the day off. The next day, after not much sleep I went in. That was yesterday. I didn't feel great but...
That morning I began to worry, really worry. The thought of this being the start another bad tumour experience started to seep in more than I had let it.
Possibility 1 - new super fast growing brain tumour with cyst
Possibility 2 - kidney cancer. ( I checked website symptoms)
Possibility 3 - my spine tumours have grown and disrupted the signals and stuff and...
Possibility 4 - one of my other tumours has grown, bled, metastasised
Symptoms and causes for my concern are:
Feel ill
Sweaty
Feel bit hot but then cold
Dizzy when I stand
Pins and needles in both arms a couple of times
Very achey back, particularly left kidney side
Sore neck
Depressed
Not all, all of the time!
Action.
Ask scans to be booked a bit early
Get bloods done in next few weeks
Cry
Go to work anyway
Lie on the sofa watching TV upon return
Early to bed
More crying
Write this
Pray?
I'm taking the day off work... I don't really do that sort of thing.
I'm poorly.
The last time I gave in and took a day off I didn't return to work for 3+ months.
This time it's normal poorly (I hope) and I'm going to see if a day a home not doing much helps me feel better.
I've felt ill for 4 days and still been to work but every night I feel rotten and so...
I'm quite proud of myself.
Putting myself first and not the job. And it is a job. An important one but a job and I'm important for reasons that are bigger than that. And everyone can cope just fine without me. They did for months before.
So I'm taking a sofa day and I'm going to look after myself.
Like normal people do.
We're away, it's better than I thought it was going to be.
It's given me some much needed brain space. A chance to switch off from everything, for hours at a time. Not completely but enough.
I climbed at home too, I saw a psychotherapist. It took most of the session just to fill him on the basics of VHL. He said it was striking how much of my life it has been in. He didn't get the chance to ask much else.
I'm not sure how I feel about it all.
I'll climb a bit higher a see how I get on.
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.
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.
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.
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?
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.
Posts
All Comments
