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.

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 special day

WP_20160202_003Today is a special day in our house.

It is Saturday.  A day to relax, to sleep in and for me to make pancakes for breakfast. I’m planning on mowing the lawns and sitting down afterwards in our newly created seating area to enjoy a cold beer.  Who knows, we might even go over to the in-laws and help build a mai mai.

A pretty normal Saturday really.  “There is nothing special in all that.”  I hear you say.

To some people it would be an incredible day.  The horsemen of the Apocalypse, War, Pestilence, Famine, Death and George see to that.  For the record, George is the newest horseman and his job is to tie extension cords in knots when you aren’t looking.  He also has a side hobby of wrapping garden hoses around lawn mowers.  Even the other Four don’t like him.

To the 2.5 million people around our planet that, like me, have MS it could also be seen as a great day.

Fatigue, pain, stigma, destruction and depression are the five horsemen of MS.  I know that while I mow my lawns I will be fatigued, it will hurt, I will worry that my wife is worrying about me overdoing it, the destruction to some of my nerves will still be there and I will wish I didn’t have MS.

So what makes today so special then?  It is my 6th anniversary of having MS.  That’s right. 6 years ago today I woke up with double vision and a very munted sense of balance.  Not a great way to start a day that included photographing a wedding.  But, like every day since, I got through the day with the amazing support of family and friends.

After 6 years of living with MS even I am surprised at how well I deal with it.

Looking back I have achieved so many things I don’t believe I would have, had it not been for the MS.

For a start you would not be reading this and my posts wouldn’t have been read all around the world.  I don’t think I would have ever written and chosen to self-publish ‘Blue Ted’s Day at Home’.

We would not be in the home we have with the wonderful lifestyle we enjoy.

And I’m pretty confident that I would not have recently played lawn bowls for my community.  That’s right! I have handed in my ‘young person card’ and have taken up lawn bowls.

I don’t think I would be doing the job I do.  Working with a fantastic bunch of people makes it so much easier to keep going, even on the days when I am a ‘bit grumpy’. They are all so incredibly supportive.  Considering that the average time for someone who is working after diagnosis is 4 years, I’m punching above my weight.

The last 6 years have taught me to appreciate the good days, accept the bad ones and most importantly to tell those I love how much they mean to me every single day.

Most importantly it has taught me that yes, I have MS but it does NOT have me.

If I can live with MS I’m sure I can work out how to deal with George……

 

Day off Day

Have you ever wanted a day off?

I have.

I’d really love a day off. One whole day.

But not from work. I actually have a great job and work with some fantastic people.

Nor do I want a day off from being a husband. My wife is incredible.

I don’t want a day off from being a dad. Oh hell no. My son makes me laugh every day.

And I certainly don’t want a day off from being alive. I even love my drive to work, especially when I turn the radio off.

No, what I’d love a day off from is being sick.

A day off from waking up and checking to make sure everything still works. As time progresses this is something I have started to do more and more. Wiggling my toes, touching my thumb and fingertips and smiling in the mirror have become a part of my daily routine.

A day without seeing what I like to call “the look”. I should probably explain “the look” here. It is what I frequently see when people look at me – “I’m just checking to make sure you are ok” also known as “I’m checking to make sure everything is working”. I know it is a look of love and compassion, but there are days I just wish I didn’t have to see my MS mirrored in the eyes of those around me.

A day off from being so tired it isn’t funny. In other words, a day on. Where I can help more around the house, kick a ball around for longer with our son and enjoy a beer on a Friday night with friends more than once in a blue moon.

A day without wondering when or where the next relapse will come from and what it might affect.

This morning I woke up (good start) and after doing my normal self-checks (passed them all) I had every intention of calling in sick to work and having what our son referrers to as a “day off day”. He’s an odd child and to him “day off days” are all about family, Lego, playing and Lego.

Maybe not such an odd child as he has a great point. A “day off day” is a day to enjoy what you have got and to enjoy those around you. So what I ended up doing was deciding today needed to be a “day off day”. So I got up, did some exercise and headed to work. The sky was beautiful, the drive was relaxing, and when I got to work I found out that #BonJovi have just released a new song. And then I wrote this.

So yes, I’d love a day off being sick. But I can’t. I have MS and while it won’t kill me, short of a medical miracle I will die with it. Someday. But not today. It’s a “day off day”.

August 2015

Living with Fatigue

One of my work mates has recently had brain surgery to remove a tumour and has been struggling with coming back to work.

In January 2010 I woke up one sunny, summer morning in Hamilton.  My one job for the day was for my wife and I to photograph my Sisters wedding.  Suddenly having double vision and a munted equilibrium made a difficult job just all the more harder.  I swore I would never drink Cheap Beer again.  A few weeks later I was officially diagnosed with MS.

4 years later and with our son a matter of weeks away from starting school I am fortunate enough to be still working but every day is hardest part of the battle.

Below are some of the things I have learnt about managing the tiredness. It’s amazing what you know when it comes time to write it down. It’s not definitive list by any means but those things help me.

EAT
The human metabolism requires regular feeding. A healthy breakfast is critical. It will help to provide you with energy throughout the whole day. I also find that having healthy snacks during the day helps. When I’m at work I also use the times when I am eating these to have a “micro break” to help me “catch my breath” and recharge a bit.

As much as it sucks – avoid the quick sugary fix to give yourself an energy boost. Its false energy and in the long term you feel worse.

DRINK
…plenty of fresh water as well. It helps to cleanse the body.

Avoid those sugary energy drinks, as tempting as they are all they give you is a quick 5 minute boost and will leave your drained for a long time afterwards.

SLEEP
Another no brainer (so to speak) but sleeping is critical for brain health. There are a number of solutions to getting to sleep. Breathing exercises help me sometimes. There are times when I’m on strong doses of steroids and on those occasions my Doctor has prescribed sleeping pills. I hate using them but I know I have to. If you having issues with sleep – talk to your doctor

The other horrible E Word
No, not “drugs” – EXERCISE. I’m not talking about running till you puke or ending up built like a professional wrestler. Soft simple and manageable exercise. It might only be a 5 minute walk on the first day but slow and gradual increases coupled with rests is hugely beneficial. Something as simple as ten minutes gardening can make a huge difference.

KNOW YOUR LIMITS
This is probably the hardest thing to do, I know I certainly struggle with it. Your limits may change from day to day but you do need to know what your limits are at that day.

and then… STICK WITHIN THEM
That’s the hard part – I suck at this. I am always trying to push myself and do what I used to. MS is incredibly frustrating like that and I get frustrated I don’t have the energy I used too but I am always trying to stick within my body’s limits.

BREAK IT DOWN
There will be things that you can and things that you cannot do. The dishes might need doing, the lawn mowing, the washing needs folding and the cat needs patting. Break it down into individual tasks and do them when you can. But don’t forget to pat the cat or they will poo in your slippers.

RECOGNISE YOUR SIGNS
You will learn that you have certain signs of having overdone it – or you are approaching your limit. I get vague, dizzy and my legs feel like they are wrapped in concrete. You will be completely different.

TURN YOUR BRAIN OFF
I find that there are times during the day when I need to turn my brain off and just sit still for a few minutes. I am lucky I can do that at home of an evening, sitting on the deck listening to the birds.

THE WITCHING HOUR
My witching hour is from 3 till around 5:30. I feel like complete crap then so I avoid scheduling anything to mentally taxing during that period. Learn when you feel most tired and work with it. I also try to have a lie down for ten minutes when I get home from work.

CHOCOLATE
If you have set yourself a goal and achieved it, be proud of it and it is ok to reward yourself.  No-one else will ever truly know how much of a struggle it may have been for you.  It could be something as simple as a piece of chocolate.

COTTON WOOL
All this aside don’t make the mistake I have over the last four years of wrapping myself in Cotton wool.  I have missed so much of my son’s first four years by not doing anything instead of doing what I can.
DON’T BEAT YOURSELF UP
There are days that I get really frustrated that I can’t do everything I want to. But you know what, my health is more important. I often ask myself when struggling with something “is it really important?”

TALK
It is critical that you let those close to you know what is going .  They can help you in a way that no-one else can.

Above all else remember IT IS NOT YOUR FAULT you got sick.

Written June 2014