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

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