What is MS?

Apparently my name came up in a conversation over a bottle of brandy that was being steadily consumed under a bush outside a castle in Dunedin by a group of accountants.  Seriously you couldn’t make this sort of stuff up.

Sitting with the group of steadily depreciating number crunchers was a workmate of mine. As the brandy bottle was passed around I was somehow dragged into the conversation that had previously been populated with tax, family trusts and cricket.

The conversation quickly turned when my workmate mentioned that I write these blogs and how much he enjoys reading them.  I did mention the dwindling bottle of brandy didn’t I?

As we sat together laughing about this a few days later it struck me how he had no idea what MS really is.  So me being me I told him.  I could see in his eyes that when I told him about the science behind it and about what it could potentially do to me he wished he was back under that bush with the brandy.

“I’m so sorry, I had no idea”, was all he could say.  Funny thing is I don’t remember laying it on all that thickly.  Likewise I didn’t sugar coat it either.

This was all a few days ago and since then I have been thinking a lot.  In the last year I’ve posted about some of what I live with and how I live with it.  While I hope it provide insight and understanding to you it doesn’t answer a glaringly obvious question.

What the hell is MS?

MS stands for Multiple Sclerosis.  It is a degenerative condition where the body’s immune system attacks the myelin sheath around the nerves (think of the plastic covering around a piece of wire) and in the brain.  When the inflammation dies down it leaves scars ( Sclerosis ) in the myelin.  When the nerves are trying to send a message to the body and there are lumps of scar tissue in the way, the message doesn’t always get there.  The gradual buildup of scar tissue in the central nervous system is what causes the disabilities that are normally associated with MS.  There is also a plethora of side effects that people have that you have no idea about which is why MS is often referred to as an invisible disease.

Like a good brandy has complexities, so does MS (OK! So that is a bit of a tenuous link but please bear with me ).  Because the brain and central nervous system are so incredibly complex and the MS can, and does, strike anywhere MS is referred to as a ‘snowflake disease’.  I will cover the different types of MS in another post and have a crack at explaining some of the unseen side effects as well.

Since the day that I started these posts I have been thinking of a way to describe MS.  At no point in time did I think I would end up drawing a correlation with drunk accountants at a castle and invisible snowflakes. However, a night under a bush with a bottle of brandy will leave you feeling a bit the worse for wear.  Likewise with MS the fatigue, nausea and lack of coordination draw some quite wonderful parallels.

Hopefully you now know a little more about what MS is.  Please remember that even though I have MS – it doesn’t have me.




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


How to be a good man.

Recently I went to my Dad’s best friend’s funeral and it got me thinking.   I wasn’t sitting there thinking away about my MS, or about dying, or about those around me dying. What I was sitting there thinking about was ‘Choice’.  Not as in ‘choice moves bro’.  But as I listened to his family and friends pay  their respects and remember him, I was struck by how he had chosen to do everything he did in life.  Mostly it was how he chose to face life, to always have a kind word, a helping hand and a smile.  Oh,  and most importantly a vest ( sorry inside joke ).

He had chosen to marry, and had chosen to have three fantastic kids.  Chosen to be an awesome Grandad.  I could see this in the eyes of those around me.  Eyes filled to overflowing with grief, with gratitude, and most importantly, with love.

Some of the choices he made must have been very tough.  To change careers and become a school teacher for example.  Choosing to take a young family to Pakistan to work in the Mission Field must have been exceptionally challenging.  And yet it was a path he chose to walk.  To the best of my knowledge he never had any major health issues to face over the years and I am truly glad for that.

He was honoured when we chose him to marry us and to oversee our son’s naming ceremony,  and we were honoured to have him officiate at both.

These Blogs are about how I live with MS.  It is not an easy road to walk,  but as I learnt yesterday, it is all about how I choose to live.

Earlier today I was reading a post about a well dressed young man getting on a bus and not having enough money to pay for his fare.  When the female bus driver insisted he had to pay (she was only doing her job), he started abusing her.  No-one on the bus did anything. The story appalled me and really bought home the importance of being a good man.  Why did no-one offer to pay? Why did no-one stand up to him?  And what on earth made the guy chose to be like that?

To me, my Dad’s friend’s legacy won’t be the trademark vest, beard and glasses,  or his friendship with my Dad.  No, as I sat at his funeral I realised that in his passing he was teaching me the greatest lesson – my life is not just about how I choose the way I live with MS but it is about how I choose to live as a good man.

Written 06/02/16

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……


I Hate Pills

I hate pills!

One of my earliest memories is the taste of a quarter aspirin (or dispirin or possibly a dishwasher tablet) in a teaspoon of raspberry jam.  Nothing could prepare my young tastebuds for the acidic bite when the pill would inevitably erupt from the jam and vindictively wedge itself behind a tooth. “Just have the pill” my Mum would plead “it will make you better”.  She never did answer my wails of “How?”

So, being a rather determined child I decided to overcome my hatred by learning to swallow pills whole by practicing with raisins.  After a bit of trial and error I eventually conquered my inability to swallow a pill.

Did it make me like taking pills any more?  Nope, not a chance!

I still hated pills.

This led to a lifetime of avoiding doctors, chemists, drug dealers and health food stores. So you can probably imagine my reaction when I was diagnosed with MS.  “I’m not taking any pills” I would mumble to anyone that would listen, including the cat.

5 years later and the average month has me taking over 200 pills and not a teaspoon of jam in sight.  When I did the maths it was actually quite a scary amount so let me break it down for you

  • Twice a month I take Vitamin D because my Dr said.
  • Every morning I have three Fish oil tablets because it is supposed to help with brain and heart health.
  • Every night I have two Panadol just before bed to help with the leg tremors I get and so I can get to sleep.
  • Every night I have a little blue pill.  NOT THAT ONE!  There is a less than endearing side effect of my MS is called Nocturia.  In other words I go to the toilet before bed, get up and go again, go to bed and then get up and go again.  My record is 8 times in 20 minutes.  So my Neurologist suggested this little blue pill.  It also helps me get to sleep.
  • And last but not least is the new addition to the mix and this little pill has been the hardest to adapt to.

Recently I started on one of the new disease modifying treatments that Pharmac has kindly started to fund. And yes it’s a pill.  This has been the hardest one to get used to.  It might only be a little pill but it’s had a major impact on my life since I started taking it.

The first impact was on my pride.  I was fiercely proud of being “drug free”, but if this drug gives me a 50% better chance of being able to walk at my sons 21st, or being in a chair the whole time, then pride be damned, I will take the pill every day.

The second impact has been on my body.   Any treatment that starts with a compulsory 8 hour day at the hospital for monitoring your heart has got to be a bit stronger than quarter of an aspirin.   I’ve had a range of side effects come and go since I started it. These include, but are not limited to, blocked sinuses, flu like symptoms, exhaustion and a regularly upset stomach.

The third impact has been on my time.  Apart from the inevitable regular blood tests, I also now have to have regular eye tests.  And then there is the time I’ve lost due to the constant feeling of illness.

I know it’s not a cure for MS but it might slow the progression down and if that makes me “better for longer” then my training with the raisins is time well spent.

So everyday I will fill my sons Smurfs cup up with water and take my medicine.  I still hate pills but know I need them.

Written June 2015


Merry Xmas 2015

Americans have a tradition that is not really adopted by the rest of the world, it’s called Thanksgiving.  While I don’t profess to fully understand it or to have even really studied it.  I really like the name.

I was really hoping for a puppy for Christmas and got a bit excited when my Mother- in-law walked in earlier with a large box, what I got instead is was a very very very nice Christmas cake and I’m not upset at all.

The yells of “this is the best Christmas ever” from Mr 6 and the excited clapping of hands as my wife opened her new handbag have more than made up for a noticeable lack of barking in our home.

The lack of puppy got me thinking about all the things I do have to be grateful for.  I have got an incredible wife and child, I also have fantastic family and friends and we live in a beautiful and mercifully safe part of the world.  I’m thankful that I live in a country that funds my medication and has a very supportive medical community.

Most importantly I am grateful that I can still walk and talk.  If it wasn’t for the support of family and friends I know that the MS would have me, not me having it.

The other thing I am truly grateful for and humbled by is the amount of you that have liked, commented and shared my posts over the last year.  Your actions have helped me to achieve what I set out to do, many months ago, of raising awareness of life with MS.

So from the bottom of the hearts of my family and I, thank you so very much and I wish you all an exceptionally Merry Christmas and a Happy new Year.

P.S. I still want a puppy 🙂

Goats on Trampolines

I have a friend. No seriously I do and she told me last night that she is not a happy camper.

Having MS, she knows that it can be a cruel taskmaster with frequent reminders that it is there lurking, ready to pounce. Yesterday it didn’t so much pounce on her as jump up and down like a goat on a trampoline.

To say I find her a fantastic inspiration is an understatement. The way she has accepted and adapted to life with MS with a laugh and a shake of her head reminds me on my tough days to keep going.

I feel like all we ever talk about is our MS and how we live with it. Our conversations sometimes end up with us playing symptom blackjack. It’s a silly game and goes a little bit like this;

“I’ve got such a sore leg”

“Oh, both of my legs are sore today”

“Oh! well my hamstrings feel like they are made of concrete”

“I’ll take your hamstrings and raise you an exploded eyeball.”

You get the idea.

But this was a game I could not play when we were talking last night. The look of devastation on her face when she told me about opening her letter box and finding a Disabled Parking card that her Dr had organised for her.  I’m not sure what was worse for her the fact that one day she might need to use it or the fact it had no expiry date.

That is why she was not a happy camper and, quite rightly so, threw a bit of a tantrum when she was holding it in her hand.

But, as only she can do, she got over her tantrum and like the aforementioned goats bounced back with a grin on her face.

I had a similar moment a few months back when my Dr said to me “It is part of your disability”.  I don’t even remember why I was there but I do remember driving home a mess. It is short sharp reminders like these that are some of the hardest things to deal with.

My friend is surrounded by a fantastic group, but I do “pity the fool” that first suggests to her “you don’t look disabled” and asks her what right she has to be using the card. One of the reasons she has been able to accept this disease is the support of her friends.

And that is the purpose of this post. We have MS but because of the love of friends and family, it doesn’t have us.

Seeing all the heartfelt comments I get on the posts, and I do read all of them, is one of the things that helps me to be strong when I’m having a bad moment.

So thank you for your love and support. You make living with goats easier.

Written 07/12/2015