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”.

What am i doing eating a Paleo Ginger cake?

Funnily enough I am quite fond of ginger things.  That’s enough sniggering thank you.

I was chatting away with one of my clients at work the other day about her business and I discovered that she specialises in Paleo baking ingredients and cake mixes.  It was while I was nosing around her website ( www.huntergatherergourmet.co.nz ) that I discovered a recipe for one of my favourite food groups,  Ginger cake.

We got to talking and she offered to send me a sample of the cake mix.  To cut a long story short – it’s in the oven as I write and the house smells divine.

Let me clarify a few things before I get to the point.  I am about as paleo as Colonel Sanders.  We do eat pretty healthily at home, especially since my wife decided to go as sugar free as is possible in our modern society.  I do not and have never been paid for these blogs. Moving on.

What on earth has a Ginger Cake got to do with Living Well with MS?

It’s about savoring your favorite things while you can.  That’s right MS can affect taste buds in some people.  I couldn’t stand beer for over two years when I was first diagnosed  ( thankfully this has remedied itself ).  Imagine not liking chocolate anymore.  Even worse —— imagine not liking coffee anymore!!!!!!!

It’s about being open minded.  In the last 6 years I’ve tried Yoga, Mindfulness, cut on back sugar and gone on medication.  I’ve even exercised ( Lawn bowls counts as a sport I will have you know ) !!!  I once said to someone ” I’d believe in the tooth fairy if it helped.”  It’s a fact that having MS has made me more open minded and willing to try new things ( when convenient I will add)

It’s about gratitude.  Having MS teaches me everyday to be grateful.  I’m rubbish at it I admit.  But I know when I drive to work tomorrow with ( most ) of my Ginger Cake in the car.  I will be grateful for the kindness of a stranger.  Grateful for the beauty of the country I live in.  And most of all grateful for the life I have.

The cake is out of the oven now and I better go tidy the kitchen before my wife gets home 🙂WP_20160713_001.jpg

Living Well with MS

A few months back I was asked a question that made me pull a face that would have quite a good Meme ( think “what you talking about Willis?” ).  And NO I didn’t involve pulling someone’s finger.

I was asked by my local MS society to assist in creating a course for people newly diagnosed with MS titled ” Living Well with MS”.

The team putting the course together consists of a MS nurse and 7 people with MS.  We come from all walks of life and all have drastically different personalities and definitely different opinions.  But we all worked together to create a course that we I’m really excited to help launch this weekend.

Week 1 is all about MS.  What it is, what some symptoms are and other “stuff” like that.  Part of it is getting everyone to talk about “their MS”  I’m leading this piece and funnily enough I was told by everyone to “keep it brief”.  Apparently I like talking – who knew…….

It has been an absolute honour working as part of the team.  I’ve learnt so much about living with MS and can see why we were selected to create the course.  Even if I did make rather inappropriate  comments about getting Botox injections into the bladder.

This is not an easy to walk ( or wheel ) along but I know that we have created a great foundation block to help.  Ultimately it is up to them if they chose to be “Living Well with MS”.

I’ve got big news

I’ve got news.  Big news.

I ate an apple this morning.

All of it. Well, except for the core and those weird tufty bits at the bottom because they taste like firewood.

While this is not exactly as earth shattering news as for arguments sake, the release of a sex tape by a media greedy socialite, it is huge in my world.

It means for the first time in a year I can continue my cunning plan of growing an apple orchard on the roadside between home and work.

Three years ago I started having an apple every morning on my drive to work and then biff the core out the window.  I figured this is better for the environment than a beer can or junk food wrapper so decided I was onto a good thing.  Besides, over the years I will be able to watch my orchard grow.

This time last year my cunning plan was derailed when I started on a Disease Modifying Drug ( DMD ) for my MS.  My body didn’t like it very much.  There is no other way to say it – I felt toxic.  My bloods tests proved this and with some of my liver functions being three times what they should be it was decided to move me to a new DMD.  Amongst other things I couldn’t finish an apple, went completely off peanuts, and the very thought of a beer made me feel like vomiting.   On top of all that I was about as social as a P addict.

But 8 weeks into the new drug my body likes this one.  Oh sure, it has some side effects ( what drug doesn’t ), like the menopausal hot flushes I occasionally get.  Ok, they can be quite intense – just look at the picture of my arm below, but at least I haven’t had any of the “gastro” side effects.  I was advised to keep my loo paper in the freezer! 13152610_1353580558001854_1780700495_n

Rereading that, this new DMD could actually be a concentrated Beef Vindaloo.

With the new drug, plus side effect management, our poor fruit bowl is a bit overloaded and there is no real way to say they are working.  Apart from the more obvious “I’ve had no relapses”, if that is the only measure I’ll take it. WP_20160527_001

Not only can I now ‘live’ the saying “an apple a day keeps the Dr. Away”.  I can also finish a beer.  There is nothing like sitting down to a cold beer after mowing the lawns but for the last year I was struggling to mow our lawns let alone sit down and have a well earned beer afterwards.

The other weekend I not only mowed the lawns but I trimmed all our hedges ( there are a LOT ), did some weeding and spread a few bails of pea straw.  Then I sat down and enjoyed two beers.  Yes TWO – please don’t tell my DR, though.  He might growl.

I started these posts a year ago this week, and like the roadway between home and work, it has started to grow.  Thank you for reading, liking and sharing about How I Live with MS.  I appreciate it more than you know.

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

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