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 ).

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.

Love is spikes and lumpy bits

My wife was recently given the honour of speaking at a really close friend’s wedding.  One problem – we couldn’t go.  There were tears, negotiations and in the end a brilliant solution.  Let’s put pen to paper and then get someone to read it on our behalf.

After a few more negotiations, and with our sons help, I wrote this for them.

If you Google the word Love you will end up with roughly 7 and a half Billion search results.  Some of the results are deeply inspiring, some are motivating, some involve religion and so on. In fact, it is impossible to put into words what love truly is

What is possible to do is to ask a 7 year old what he thinks love is.

Love is when people join together

Love is having friendship

Love is being kind to people

Love is People respecting each other.

Love is also two spikes with lumps on top.

This is Love in the mind of a 7 year old boy.  Deep, meaningful and all about people being together.

There is a famous quote that goes “People will not remember what you say, People will not remember how you said it.  What people will remember is how you made them feel.”

(We got the speaker to turn to audience) Can you all please hold your hands up in the air and with your thumbs make two spikes and with the rest of our hands make two lumps on Top.

No words can express how much your wedding means to us. So before you is a sea of love.

You both epitimise Love.  You join people together.  You are amazing friends.  You are always Kind and respectful.

Thank you both for your love of each other and of us for now and forever.

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.

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.

Living with Fantails

In New Zealand we believe that a fantail ( which is basically a Sparrow with a nice bum ) symbolises a loved one who has passed away. So when one started faffing around, while my wife and I were sitting on the deck last night, it reminded me of all the people who aren’t here to celebrate Christmas with us.

More importantly it made me realise just how important the people here are. I couldn’t live as well with MS as I do without the love and support of family and friends.

My wife and son are incredible and keep me going every single day. They laugh with me when I trip over oxegyn or forget why I opened the fridge door.

They put up with me when I need a kindy nap and when the pain makes me grumpy.

Christmas is a time of giving but good people give all year. The hyperactive little Fantail reminded me of this.

From my family, we wish you a very Merry Christmas and we know you will have a fabulous 2017.

Listening to the grass grow.

There are times in life when it is good to sit back and think about the road that has got you to this second in time.  There are times when it isn’t so good – I am thinking in particular of some pretty horrendous decisions I made when I was younger at the hairdresser.  For the record I strongly don’t recommend bleaching red hair,  it ends up looking like you had a pee on your own head.

September is one of those months for me when I do reflect on what has led me to this moment in time.  Two people that are particularly important to me have their birthdays  The love of my Dad and my Aunt are exceptional and,  now that I have a modicum of sense at the hairdresser, unconditional.

On a sunny Saturday in September 1984 my Mum had a heart attack and passed away suddenly.  I was 13 and to say the least it sucked.  Funny – as I write this – a song called “Nobody’s sad on a Saturday night” just came on.  I was.  In the rear-view mirror of my life this day was worse than getting diagnosed with MS.

On a far more cheerful note September also holds a special anniversary for our family.  3 Years ago we packed our lives into some boxes and moved out to our new home in Kirwee.

Living here has taught me so much both myself and how to live better with my MS.

Probably the biggest lesson for me has been about bubble wrap.  No I’m not talking about the pure joy of sitting down and popping bubbles till your fingers hurt.  No.  Because that would be silly now wouldn’t it.  I’m talking not wrapping myself in bubble wrap and refusing to live with MS.

Let me give you an example.  At our old house it used to take me about 8 minutes to mow the lawns and that includes 3 minutes swearing at the lawnmower because it refused to start.  On those spring days when you can hear the grass growing behind you – I could maybe fill a catcher of grass.

I HATED DOING THOSE LAWNS.  I’d get frustrated and throw “tanties”.For no other reason than I felt it wasn’t fair that I hurt and was already tired before I started. It is safe to say that for a while there I wasn’t living with my MS very well.  Looking back –it’s as embarrassing as a few of the haircuts….. But if you don’t make mistakes in life then how the hell are you ever going to learn.

Over the last three years I have developed a far better way of looking at life with MS.  I’ve learnt to not only accept the fact I have it but to embrace it and live my life with it to the best of my ability.

I love doing my lawns.  Yes I still hurt.  Yes I’m still fatigued before I start.  Yes in September I can hear the grass grow behind me as I mow the lawns.  And yes the lawnmower just sits there looking at me like I just yelled at a kitten.  But – and this is what I am really trying to say – I still can mow my lawns and for this I am grateful.

What changed for me?  It can’t be something as simple as moving to the country and having a Peach Tree ( 90’s joke ).  No it was realising that I needed to make a choice to live better with my MS.  It is the love of,  and my love for,  my Wife,  my Son,  my Family and my Friends that helped me to change my attitude and to chose to live well with my MS.

Above all else September has taught me to appreciate what I have and that “A house is where you live but a home is where you love”.

How I live with MS – Speech from April 2016

A little over 6 years ago I woke up in Hamilton ready to photograph my sister’s wedding. I had double vision and felt “a touch wobbly”.  A few weeks later after a course of antibiotics for an “inner ear infection” I found myself in a MRI machine and eventually got a diagnosis of an “inflammation on the brain stem”

It was starting to become obvious at this point that something was going quite wrong.  I was dribbling toothpaste out the right side of my mouth and my eyes were not co-operating and moving around of their own volition.  Apparently it was driving my wife nuts with my eyes blinking out of sync.

I remember us sitting in the Doctors surgery with our 6 month old son and being told I had MS.  I think my initial reaction was “what the Feck is that” followed by “I can’t even spell MS let alone Multiple Sclerosis”

So me being me and having worked in the technology field for nearly twenty years I went home and didn’t Google it for two years.  I didn’t want to know.  Was that smart??  I’m not sure.  Driving was a big part of my job at the time and on my first trip back at work I was driving to Dunedin.  I swear I checked my eyes and face in the rear view mirror every kilometre to make sure it was all still working again.

By the time I got to Oamaru I was so worried that all I could imagine was being in a virtual coma and my wife having to explain to our son why I couldn’t see him, touch him or tell him I love him.  I was quite depressed at this point and I wanted to drive in front of a truck.

A trip to my GP when I got back is when I learnt that Depression is a very common symptom of MS and that suicide is the biggest killer of men with MS in NZ.

I spent the next two years on anti-depressants.

 

My MS

Depression, a facial palsy, separated vision and a munted equilibrium are obviously symptoms that I had to deal with at the outset.  But that was all 6 years ago.

What else have I had?

My left leg decided to develop “drop foot” a couple of years back and I realised  last weekend that it never 100% recovered.  Scuff marks on the front of my left shoe are a bit of a giveaway.

Everything else I have are all why MS is called an invisible disease.  Fatigue, Pain, Brain Fog and spasms are my equivalent of the four horsemen.

 

So, what have I learnt from 6 years with MS?

I think that we fight MS on three fronts.

• Physical Battle
• Mental Battle
• Social Battle

The battles are all intertwined but let me break them down a bit.

Physical – we live with our symptoms every day and most of them we can’t control.  We can’t control our relapses.  We can’t control the pain.  But there are things we can do that can help us with some of the physical battle.  The heat flattens me and jumps on my fatigue like a goat on a trampoline.  I can’t control this BUT I can make sure I drink plenty of water, avoid too much son and if I get too hot lie down on a pet mat I bought from Bunnings.

Mental – It is very easy to just bury your head in the sand and wrap yourself in bubble wrap – I did for two years.  The cold hard reality is we all have to live with MS in one way or another.  What works for me mentally may not work for you.  We are all different.  I try to see the funny side of things, I do get angry sometimes, particularly when I just can’t do things like I used to.  But like everything it is about how we CHOOSE to deal with it.  I’m a red head and in the past I have chosen poorly to live with that fact – I got my hair streaked, the bleach made it looks like urine.  Like most things from the late 80’s I chose poorly.

Social – I reckon this is the toughest battle.  Who has heard any of the following “But you don’t look sick”  “I thought people with MS were all in wheelchairs” “We didn’t think you would want to come because you’re sick” The worst one I hear is “Daddy will you play with me” Whether people do it for the right reasons or not, comments like these can be hard to deal with.  Humans are social beings at heart, we crave the love and attention of others.  Having MS can impact directly and indirectly on our ability to socialise.  It is very easy to become isolated and to put ourselves into a self-imposed exile, to “wrap ourselves in bubble wrap” if you will.  But I believe it is critical that we don’t.  We may have to adjust how we socialise.  I don’t know about you but I can’t party like I used to when I was 20.  But I can sit down and have a beer after a game of bowls

I believe the key to living well with MS is not to try and live well with it every single damned day.  You simply can’t.  The key is to live your life well with MS.

Over the last 6 years I have achieved a number of things.  I wrote and self-published a kids book, I run a Facebook page that is read worldwide.  I’ve been published in three countries for pieces I have written on MS.  Before my diagnosis the only writing I ever did was emails and texts but I’ve always been a voracious reader.  The reality is I wouldn’t have done any of these if I didn’t have MS.

I don’t like having MS, but I do have to live with it.  So do my wife and son and it is my choice how well we live with it together.

 

Speech from 7/4/16 at Ashburton MS Society

A quick thought

I’m in the process of writing a speech about living with MS for later this week and I’ve written a line that I thought “I’d share with the group”. I think it sums up everything I’ve been trying to say.

I don’t like having MS, but I do have to live with it and so do my wife and son. It is my choice how well we live with it together

Betrayed by your closest ally.

February the 22nd 2011 will go down in the annals of New Zealand history as a day of immense tragedy.

It is the day that our beautiful city of Christchurch was shaken.  Shaken from below by the power of the earth, the very substance that our city is built on.  What should be the cities strongest ally turned traitor and shook it so hard it broke.

The earth broke buildings, roads and homes all of which can be rebuilt.  The worst part is that the grounds betrayal shook and took lives and as a result Christchurch and her people will never be the same.

Over the last few days as I have thought about the 14,000+ earthquakes that we have endured I have drawn a number of correlations between MS and the Earthquakes.  “What on earth are you on about?” I hear you thinking but just bear with me on this, it does make sense.

Firstly, The Betrayal.

Like the earth did, your strongest ally (the immune system) betrays you and will attack both your Central Nervous System and brain, making a hell of a mess. The attacks come from out of the blue, you don’t see or feel them coming they just happen.  It is entirely possible to lie down for a few minutes and then wake up, unable to walk properly.  I know this for a fact as it happened to me at a picnic on the banks of the Waimakariri River last year.

Secondly, Hold On

An earthquake is something you cannot control.  You literally have to dive for the doorway or under the desk and hold on.

MS relapses are the same.  You, quite literally, have to hold on to something and then hope like hell the steroids help you to get through it and bounce back.  I’m sure a lot of people that know me must think I have a “little thing” for touching walls.  I’m not checking to see if the wall needs a cuddle, I’m using it to keep myself upright sometimes.

Thirdly, They will change you.

The reality of life is that events happen that will have a lasting effect on your life.  You don’t have to like this but it is true.  They can be positive events, like when I met my wife or crap ones like getting MS.  The change can be positive or negative but the reality is how you accept and adapt to it.

Fourthly, Drink wine.

Years ago I asked a wine aficionado what is the secret to the perfect bottle of wine.  “It is who you chose to drink it with” was the perfect response.  Stuff is just stuff, we lost all sorts of things during the earthquakes and I’ve dropped a few glasses since.  It doesn’t matter to us if we have a full set of wine glasses at home or if i should sit down to drink it. What matters the most is who you choose to drink with.

Most importantly, It’s up to you.

I can no more control when a relapse happens as I can stop the earth shaking.  This is not from lack of desire to do so.  It is simply impossible.  There are things that I can do to help prevent relapses like drugs, diet and exercise but the simple reality is relapses may happen.  The biggest learning I have made from both events is to not worry about it and get on with and enjoy life.  My attitude is the only thing that I can control.

And Lastly, Sit down to pee.

Seriously, if the earth is wobbling from an earthquake or MS, I have accepted that it is perfectly OK and very wise to sit down to pee.

Written 24/02/2016