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

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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

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.

 

13/03/2016

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