Happy anniversary

Today is the 8th anniversary of me having MS. In another 8 years my first lesion will be old enough for me to kick it out of home ( if only ).  Mind you it will also be old enough by then to get its drivers license and can drive it self off into the big wide world.

Short of some awesome medical advances in that time it will have to remain where it is continuing to teach me new stuff.

So, in talk show style.  Here is a list of the top 8 things MS has taught me in the last 8 years.

  1. What is MS? –  MS stands for Multiple Sclerosis and it basically means that my immune system is trying to eat bits of my brain and Central nervous system.
  2. You don’t know how strong you aren’t till you need to be – somedays I am in a bit of pain some days a lot.  But I still have to live, love, laugh and learn regardless.
  3. The make the names of the drugs hard to say and even harder to spell  –  A lot of people with MS develop difficulty with their speech so can you imagine trying to say the name of a pill that sounds a  lot like Gonorrhea.  Enough said.
  4. Peoples eyes are the hard to look at–  this might sound like a weird thing to learn but it is true. I’d rather see sympathy in someones eyes than empathy.  I had a conversation at a bbq the other night and was discussing this with someone. “Surely empathy is better to see than sympathy” was the observation.  “No! If they have empathy then they KNOW what I am going through and I wouldn’t wish this one anyone.  Sympathy means they care.”  The look in my wife’s eyes when she checks my face to make sure I haven’t developed a palsy again is something I am always aware of too.
  5. The fatigue is awful –  The best way to describe MS fatigue is “ when you are tired your eyelids want to close,  with MS fatigue your eyebrows want to close”
  6. It is different for everyone.  MS is often referred to as the snowflake disease. While there are some common symptoms it can and will strike everyone differently.  It will wander along at its own pace, in its own little world and do whatever it feels like.  Not unlike a toddler in a supermarket really.
  7. Attitude is everything – I wanted to write something cool and inspirational here to finish with but the reality is it is up to me how I chose to live with MS.  My attitude is something that I can control.

So that is my list of the top 8 things having MS has a taught me in 8 years. But but but there is only 7 I hear the more detail focused people say.  

#8 is by far and away the most important.

  1. People make the difference – If it wasn’t for the love and friendship of those around me I wouldn’t have achieved diddly squat over the last 8 years.  It was the love of those around me that helped me get through the early years when I was really struggling.

Thank you to everyone who supports, inspires and encourages me. You help me to live better with MS.

Dream Big and Live Bigger.  ( I might have to copyright that I think ).

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My Yearly Speech

Every year I give a speech to a Theatre School that I am part of.  I thought I would share it with you.

 

Do you believe in Magic?  I do.

Why do you think I do?   ( someone yelled from the audience “because you are awesome” )

Because that is what you do everytime you walk out on stage.  You create Magic.  You weave a spell with what you’re learning here and you bring your character to life for your audience sitting there.  

AND I love that magic.  I love seeing Robin Hood standing right in front of me.  I love seeing the Pillow dragon flying across the stage. I love seeing Freddie and the Three Fat Fairies.  I love seeing every single character as you bring them to life.  And I love seeing how our students go on to do awesome things with their lives.  I know students that are now performing all around the world.  I know Lawyers, Teachers and Parents.

This year you made me proud, you made me laugh and some of you made me cry.  YOU should all be very very proud of what you have done.

Original Scripts has been a huge part of my life for nearly 25 years and YES that makes me feel old.

But this year I experienced the Magic of Original Scripts in a way that i never realised existed.

The magic of queuing to see a play.

The magic that is seeing your child on stage.  Experiencing his nerves, my nerves and the nerves of everyone that is queuing to come support someone.

But there is more magic to us than just what happens on stage.  There is the Magic behind the scenes.  

Our annual Kidsfest production wouldn’t happen without the wonderful support of the Rata Foundation and the hard work and dedication of the members of the Trust.

Our productions wouldn’t happen without the fantastic support of all of our volunteers.  I was blown away by the quality of the lighting and sound in the shows this year.

( To the Parents ) The students wouldn’t be here without your love and support.

( To the Students )  And the magic onstage wouldn’t happen without all your hard work.

On behalf of the Trust and my family I would like to thank you for all your hard work this year.  

I want to finish with a text my wife got this week “Last night was totally unbearable but the kids were absolutely amazing.  So proud of the school.  WHO said that kids of today are soft !!!.  They are Champions.”

You are all champions.  

Have an amazing Christmas and holidays and please keep being magical.

Choose to Dance

I admit – I cant dance.  I also admit – I have never been to this.  But what I will admit too is that a new dance program that is being run with the MS & Parkinson’s Society here in Canterbury is making a difference in the lives of those that attend that have MS or Parkinson’s.

Have I chosen to dance in the past.  Certainly.  I chose to dance at my wedding.  Beer helped me chose to dance on a fair few Friday nights and i did once dance on a stage as a Barley sugar.

Everyone has choices to make on how they live their lives. Have a look here to check out an interview with Adriaan.  He is making a choice every-time he runs a class to help people live better with their illness.  And that choice is one to be immensely proud of.

Choosing to make a difference in life is harder that choosing to dance ( especially when you are under the influence ).   I find it really easy to focus just on me and ignore how others are doing.

 

 

 

 

 

 

 

An unexpected opportunity

Sometimes in life an opportunity presents itself that cant be ignored. This happened to me recently when I was asked about joining the committee that works with the MS and Parkinson’s Society of Canterbury.

I have been working closely with the society over the last 18 months helping to develop and deliver a course for people that are newly diagnosed with MS called “Living Well with MS”  I have learnt so much about myself and my MS in the process.

A myriad of questions wandered around my brain over the days leading up to my decision.  “Will i be able to manage the additional workload above and beyond my job and life?’,  “What do they do?’,  “What do i have to offer?”  and for some reason “Will there by cake?”

Having MS has taught me to make the most of opportunities.  I know I have much to learn and i know I will love making a difference.

The website for the Canterbury society http://www.ms-pd.org.nz/

For the record – there is no cake – YET.

A 7 year old boys mind is a weird place.

The mind of a 7 year old boy is a weird and wonderful thing.  It jumps and tumbles around all over the place.  One minute you can be talking about small copyrighted plastic bricks.  The next you will be talking about how cool it would be to be able to see farts. I did advise against this being a cool thing by the way.

The mind of our 7 year old boy is no different, it is a rapidly evolving landscape.  Whirring away at a million miles an hour, always learning, asking, deciding and processing.  But let’s be honest the average 7 year old boy would get lost picking his own nose.

This morning I had a humbling insight into the way our son’s mind works.  We were sitting down having breakfast and he suddenly remember something, a drawing from school during the week and ran off to get it.

During the week his school had given the class an exercise where they had to write something they were thankful for and then draw it.  For those that know Mr 7 it will come as no surprise that there was a picture of Blue Ted.  For those that don’t – Blue Ted has been his favorite Teddy since the day he was born.  His smell is second only in size to his personality.

Cautiously I asked ” What else are you thankful for?”, expecting the aforementioned small plastic bricks to be mentioned a lot.

I was wrong.

After a couple of spoonfuls of porridge and a rather awkward silence he came up with the following list.

“Mum”

“You”

“My friends at school”

“My best friend”

None of these were particularly out of the ordinary.  Until.

“Your Mum and Dad for bringing you up to be a great Dad”

“GrandMa and Grandad for bringing up Mum and Uncle R and Uncle L to be great people”

I Just sat there and stared at my porridge taken slightly aback by the thought process and at the same time feeling immensely proud.

Being a parent is tough at the best of the times.  For my wife and I, with us both having our medical battles it can be really tough.  We both struggle with fatigue, pain and the day to day trials of having an illness, working and running a home.

It is an never ending battle to find the energy to play, to laugh, to teach and sometimes even to sit and read a book with him.  And we only have the one child!

But all of the struggles are worth it when I can see we are helping to create a good, empathetic human and that is surely the primary objective of parenting.

If having MS is helping me to help Mr 7 grow up to become a good person then I can add it to my list of things to be thankful for.

All about choices

A couple of weeks ago I was in Melbourne at my work’s annual conference and it was all about people, one of the major focus’s was how can we make a difference for our clients and for each other.

One of the nights was particularly amazing for the team I am part of and definitely for me personally.  Not only did we all get awards for overachieving for the year but I picked up a special award for customer service.

These awards are proof that hard work alone isn’t enough, they also prove that the people around you make a difference, it’s the encouragement we give each other, the laughs we share and the heartaches that help us to do so well.

The awards pale in comparison with hearing a gentleman by the name of Michael Crossland speak.  I’m not going to go into his story and what makes him so inspiring but I really suggest you look him up online.  What he talked about was choice, the  choice we are all faced with every single day, the choice of being a better person.  The choice of getting out of bed and making a difference in someone’s life, it can be something as simple as a smile to a stranger, the thing is we can all make a difference and not even know it.  Michael made a difference in my life and I was fortunate enough to grab 5 minutes of his time afterwards to thank him for reminding me that I can make a difference.

This year is going to be huge for me.  I have been working with the incredibly talented #originalscripts to turn some of my blogs into a play.  Around the same time I will be releasing a compilation of the posts as an ebook.

More importantly the course that I had the honour of helping create for people newly diagnosed with MS will be run at least twice and also presented at an Australian wide MS nurses conference.

Are you tired yet reading all of that?  I am.

There are other goals I have for the year and I really should set aside some time for some work goals too.

But that is me.  That is my year.  That is some of what I am choosing to do.

With MS no one really knows what is going on inside my body.  It is the same with people.  You don’t always know what is really going on inside.  But a smile, a thank you or a kind word can make a world full of difference.

Michael reminded me it’s not only my choice as to how I live with MS but it’s also my choice as to how I really live.

What about you? Seriously. What will you do? How are you going to help make the world a better place this year?

I have been ROBBED

I’ve been robbed and I don’t really care.

I’m at a work conference in Melbourne and I’ve started to think to myself that I’ve been robbed.  No, some little toerag hasn’t stolen all my undies or my wallet.  No I think that I have been robbed of something else.

That is my ability to drink which is why I’m not convinced it is a bad thing.

It was over New Years that I first started to think this.  As we do every year we got together with some great friends for a night of laughter, booze and “the circle of death”.  I had 1.5 beers the whole night and a sneaky Mojito.  A few years ago at least a dozen beers would have disappeared and, oh dear Lord, let’s not mention the next day.

The funny thing is there was still a lot of laughter, the circle of death was still played and we spent time with our friends.  But I didn’t feel like rubbish the next day.  Well ok I did feel like rubbish but that was because of the late night not a hangover.

Maybe I’m growing up.  Maybe.

Don’t get me wrong here I like a good beer, particularly after working in the garden.  I also am rather partial to sitting on my deck of an evening with wee dram and looking at the stars.

So if I like to drink, why is it not such a bad thing that I just can’t drink anymore?  My MS has already given me some of the effects that alcohol does.  I get a bit wobbly feeling.  My body certainly does buzz at various times.  There are times when I feel very ill.  Apparently I tend to get a bit forgetful.  And there are mornings I just want to pull the duvet over my head and pretend the world doesn’t exist.

“So just what exactly has MS given me that too much to drink never did” I hear you thinking.

It has given me a greater appreciation of being alive.  I value getting together with friends.  I value spending time with my family.  I value the days when I can kick a ball around with my son.  I value the days when i need to rest and can lie down and read a book with him as well.

I know this conference will get quite boozy and I don’t care.  I’ll happily sit and drink a water and enjoy the company of those around me.  I may even have a beer or wine with them.

The peer pressure that exists when you are young to “get into it mate” is stupid, MS has taught me that.

My body literally won’t let me drink more than two beers now days or maybe it is one of the side effects of the medication.

So has my MS really robbed me or has it given me an unexpected gift?

I will let you be the judge of that.