All plugged in

So this happened today. After four years of MS treatment via pills that had side effects including regular menopause type hot flushes I have been moved to a six weekly infusion.

Why have they moved me? I’ve got a bit of new activity in my brain. Some would say that’s a good thing to have activity in the brain but not the sort that causes little lumpy bits.

Oh yeah and the index finger on my left hand has been somewhat AWOL for a few months.

So that’s why I am sitting in the hospital plugged in to the matrix (sort of).

It’s been a nervous few weeks as I have been drug free since the end of November.

The infusion has a higher effectiveness at blocking relapses and flushes are not a side effect. There is a list of side effects that makes interesting reading and I’m not allowed to be allergic to mice or have syphilis.

I’ve been trying to work out how I really feel about moving to stronger treatment and then a Bon Jovi song came on the radio. Debbie walked up the aisle to one of their songs so I know that together we have got this.

Now I just have to sit here quietly for two hours…….

What are you grateful for?

We have an awesome company policy at work.  Once a week we all go out and have eggs on toast for breakfast.  Apart from a great breakfast and coffee to start the day the thing I really like about it is we cannot talk about work outside the office.  So we get to sit and spend time talking about what is happening in our lives or staring at our phones, sometimes both.

So this morning I did something different on my 12 days of Christmas gratitude. I asked everyone what they were grateful for.  I was greeted by stares indicating I had something very strong in my coffee that had caused me to go stark raving mad.  Once they realised I was actually being serious there was a prolonged silence.  Eventually we started to talk about what we all were grateful for.   It is not my place to talk about what they were grateful for.

It is unfortunately very very easy to get self absorbed and to miss what is going on around you.  I know I do that.

What I’m trying to say here is that on the 7th day of Christmas I stopped and thought about others and by asking them what they were grateful for I learnt a lot.

I’m not going to post the three things I am grateful for today.  Instead – what are you grateful for?

Fantails, cats and pies – Gratitude day 6

Have you ever watched the slightly manic way a Piwakawaka (fantail) flits around, bobbing from branch to branch, sometimes seemingly going backwards?  They bring a vibrancy and energy wherever they are bouncing their way through life.

I love the way they sing their little song.  On the grounds that the majority of all bird song is based on them looking for sex i really would rather not know what they are actually singing about especially when you consider I have sometime sung back.  So today I am grateful that at this time of the year we have fantails hanging around our house. They remind me to be happy, keep moving and always sing a little song (just not about their subject matter as that would not be a good look).

As I sat down to write this tonight our cat, Peaches, decided she hadn’t had enough attention today and in the indifferent way, that only a cat can do, decided she wanted pats.  She is currently sprawled out next to me purring her heart out and annoyingly flicking her tail across the laptop when ever she actually feels like it. And because she is a cat she is also covering ⅔ rd of the mouse pad.  No wait! she moved and is now covering the whole mouse pad and the mouse. I am grateful for her conditional tolerance and mighty purr.

Pies.  I know I probably shouldn’t be but I am grateful for pies.  Especially pepper steak pies. There is nothing quite like sitting down to devour a good pie.  The way the pastry all flakes away and gets EVERYWHERE. The scientifically impossible hot filling.  The unrepeatable comments after burning my tongue, chin and frequently skin on the back of your hands.  Yes I am grateful for a staple part of the Kiwi diet – The humble pie.

 

A lesson in procrastination

Have you ever really procrastinated on something all day and got grumpier and grumpier with yourself for doing it?  That is my day today.

Part of the challenge I set myself around writing down 3 things I am grateful each day is actually sitting down and WRITING THEM DOWN.  And today I have failed miserably to do this. There are no excuses I have procrastinated on doing it. And yes I am grumpy with myself.

But, in that, there is something to be grateful for.  The ability to reflect on something ( or complete lack of doing something ) and then learn from it.  I have a saying “A mistake is only a mistake if you don’t learn from it” So I am grateful for the ability to learn from my mistakes.

I know that I am incredibly grateful for cereal.  You wouldn’t believe how grateful I am after three years of having porridge for breakfast to help me digest the medication I was taking for my MS.  Oh yes I am grateful for cereal, especially at this time of the year when I can have fresh berries from my garden on it.

Lastly I am grateful for Pharmac for funding the medication that is available here for managing the progression of MS.  There is no way we could afford roughly $2k per month for the pills I have been on for the last 3 years, that’s right it would have cost us the best part of $100,000. I have no idea what the medication I am moving to in the new year is worth but based on some of the blood tests I have had over the last few weeks I’m pretty sure I do not want to know.

On the fourth day of Christmas I am grateful for.

Take a moment to look around and you will see one of the things that I am grateful for today.  You said oxygen? You did didn’t you? While I am constantly grateful for oxygen it is not what i am grateful for right now.

Have another look.

I’ll give you a clue – if you look really close you will see it.  Not so close you bang your nose on your phone. Have you worked it out yet?  You are devouring it right now.

That’s right I am grateful for the internet.  It is a place of mixed blessings. If it wasn’t for the internet I don’t think I would have ever met my birth family.  I wouldn’t have the job I do and I sure as hell wouldn’t have a clue when anybody’s birthday is…..

The sound of rain on the roof while I am curled up in bed is what I am grateful for right this second.  Our lawn is browning off and we have punnets of strawberries and raspberries growing that are in great need of a good drink and what is Christmas without strawberries and raspberries???

I lost feeling in one of my fingers a few months ago and with it being slightly unco-operative it can cause some interesting and potentially embarrassing typos.  There is a reason why they say “write something, then edit it, edit it again, and again” Spellchecker is the third thing on my list today. Without it half my post would be eligible (according the grammar checker they are anyway but that is a different issue entirely)

Finding three things every day during the twelve days of Christmas that I am grateful for is what I am choosing to do. If you would like to share what you are grateful for today then please leave a comment.

Gratitude day 3 and my final end of year speech

Today I am grateful for the years of laughter that I have had at Original Scripts Theatre School.

For the performances that have made me cry.

And beyond my ability to put into words I am grateful for the opportunity to speak at the end of the year prize giving today.  And I am proud to admit that I choked up more than once saying this.

Original Scripts has been a huge part of my life for nearly 30 years.  I’ve been an actor, a photographer and for the last twelve years I have had the honour of being the chairperson of the trust.  And this year I decided to resign as chairperson. Original Scripts is all about developing talent and helping others and I know it is the right time for me to step aside.

I have done some amazing things and worked with some truly inspiring people over the last twelve years and learnt so many lessons.  I’ve laughed, I’ve cried, and I have always always ALWAYS been inspired by your hard work and dedication.

Some of you are better actors than others, better singers than others and you are all better dancers than me.  That is talent but it is not what we are about. We are about growing as people by learning the art of theatre.

There is a fantastic saying “one person can make a difference”. And it is true.

Partly.

Walt Disney was just one man.  Mother Teresa was just one woman. Richie McCaw is just one man.  They had passion and dedication but do you know what made them truly amazing.  They knew that they needed people around them. To be part of a group. A team.

Holly and Tom know are both highly talented but they know they are better together.

There is a reason we call Wendy and Sonia the twins.  They’re not actually twins. Clearly. But they know they are better together.  A formidable team and they have helped thousands of people learn theatre and to become better people.

If I may, I’d like to leave you with a parting thought.

I am grateful for every tear I have shed.

Every laugh I have shared.

Thank you for your hard work.

Thank you for your support

And most importantly, thank you for teaching me we are better together.

 

Kia kaha, kia noho ngatahi

Stay strong and be better together.

 

Gratitude Day 2

There is nothing as loud as the look from a dog when you have food or they want to go for a walk. It is deafening.

And this morning the dog was causing my ears to bleed with “the look”.  Clearly there were trees out there that were desperate to be sniffed and then wee’d on.  There were piles of horse poo that needed to be sniffed and tentatively taste tested (dogs are loving but gross creatures).

I try to go for a walk everyday and was four days overdue so before my ear drums got abused anymore by the dog’s eyes I grabbed the lead and off we went.

In between all the trees, poo and other items that we had to stop, sniff and then cock our leg on (and by we I mean the dog)  I had time to think about what I am grateful for today.

ANZAC Lane.  In Kirwee there is a laneway planted with Oak trees to commemorate those that have gone to war for our country.  Our lives could be drastically different if it wasn’t for the choices they made and that is why i am grateful for ANZAC lane and those that had the vision to create it.

Bees.  Bees turn flowers into fruit and without fruit how are we going to have strawberries and ice cream on Christmas day?  Bees also turn flowers into grain which is then turned into beer. Enough said really.

Going for a walk.  I am incredibly grateful that the dog badgered me into going for a walk.  It is easy to forget how beautiful the world around us. Personally I didn’t feel the need to stop and sniff and / or wee on everything but his joy and passion for life was contagious.

What are you grateful for today?

12 days of Christmas challenge

It’s Friday the 13th and unless my maths is failing me quite dramatically it is 12 days until Christmas.  “Why is this important?” I hear you thinking. I will come back to that.

Hold your phone nice and tight and get ready to scroll through the first post from me in over a year. (Sorry about that).  It is a bit shocking.

I recently started exercising.

You read it right! I started exercising a few days ago.  And I am going to challenge you to do the same exercise by following the steps below.

First step.  Decide on what you are going to exercise.  Legs? NOPE! Arms? NOPE! Cardiovascular?  Probably should but NOPE!

The thing I have started exercising is me.  At first I thought it was going to be really, really, really hard and on the first couple of days it was but like all types of exercise it gets easier.

Second step. Decide on how you are going to exercise.  This was a tough one. Listening to music?. TOO LOUD! Yoga?  TOO STRETCHYl! Long walks on the beach? TOO SANDY!

Having a few health challenges in my life can be well challenging and if i am not careful consuming.  So I decided to exercise the positive and focus on what I have in my life to be grateful for.

Third step.  How on earth do you exercise Gratitude?  I spent quite some time contemplating this and came up with a really simple solution.

Everyday I write down three things I am grateful for in my life.  Sounds simple and sounds a bit like something you would read in a self help book eh?.

That is the exercise I decided to do and you know what I am enjoying it.

Fourth step.  Rinse and repeat!  Remember how I said there are 12 days until Christmas??  Here is my challenge. Everyday, for the next twelve days, I will post a list of three things I am grateful for on here.  If you would like to join me that would be awesome. But it is your choice.

The three things I wrote this morning are:

1. 1. My MS.  This is a sucky disease and is different for everyone but i am grateful for the MS that I do have.  I’m in the middle of changing meds and haven’t felt one of my fingers for three months but I am grateful for what I do have and honestly, I think it helps me be a better person.
   2. That I can write. I have the right to freedom of speech and can freely exercise that in written form.  Even with a numb finger (which does cause spell check to go into overdrive) I can still sit here and write this.
   3. Lavender.  I love the smell of lavender.

For the record all of the things I decided not to exercise are really, really, really important and should not be ignored but they are not what I am choosing to focus on.

Exercising me is my choice and this is how I am choosing to do it.

Oceans of hope – day 4

This ship is a smorgasbord of sensations. And that is a lot of big words to start day 4 with.

After an incredible day at sea we ended up mooring for the night in Optio Bay in the Coromandel, where I have never been. We woke up a number of kilometres away moored just off Great Mercury Island, also somewhere I have never been. Did I mention the captain jumped overboard yesterday? Apparently there was some weather in the night that “made it a good idea to move”.

This ship makes a lot of funny noises. The boom of a sail as it catches the breeze to send us swishing across the waves is quite magical. The horrendous graunching as they bring the anchor up at 2am right by the pillow is a different kind of magic.

I have just come downstairs after helping scrub the decks with seawater. In the sea. In the rain…… while I was doing it I heard a “woosh” behind me. Now on a boat with people with MS it could have been anything and I mean anything. Do we really want to know? you ask. Turns out it was a sound I have always wanted to hear.

A pod of 8 dolphins surfaced right behind me. There was even a calf. They frollicked around as the boat rocked and rolled as we made our way at various speeds from side to side to watch in wonder.

For me this was a major bucket list moment and I admit I nearly cried with delight. Can you imagine if we saw whales.

The irony of the dolphins is my phone was below decks so I didn’t get a photo. Hopefully they will hang around in the bay with us today and I will get some more. But if not then everyone else had their phones out and I have the memory of seeing 8 dolphins while I was on ship with 40 people with MS from across the globe. Now that is a sentence I never thought I would hear myself say.

Funny what you hear on a ship.

#stillhaventshaved

#isaw8dolphins

#oceanaofhope

Oceans of hope -Day 3

Day 3 has dawned in what can only be described as “a refreshing manner”. 6:30 in the morning and the lights were turned on and an impossibly excited voice belted its way past my one remaining ear plug “ wakey wakey it’s time for a swim”.

“That’s funny” I thought, as I didn’t recall seeing a lap pool lap pool on board.

Then a realised we were at sea. The big cold wet sea. My next thought was not overtly polite.

I’m pretty confident that you can imagine how the next half hour went.

That’s right 7am on a Saturday morning I jumped off a perfectly good boat. What was a little concerning is so did the captain. But he came back so we can’t be that bad a crew.

Yesterday we got underway and one of the coolest moments was when I was stearing the boat with the sails all up.

I remember looking around and marvelling at how everyone had worked together to raise the sails and do other boaty things.

The courage and attitude of everyone is truly humbling. No one is backing down from a challenge and everyone is working together beautifully.

There have been moments when I have wondered what on earth possessed me to sign up to do this. I’m sure everyone has thought that but when I was stearing the ship I knew that this is an amazing opportunity and I am loving it.

Thank you all for the wonderful comments so far.

#stillhaventahaved #jacksparrowjokeshavestarted

#oceansofhope