Oceans of hope – day 4

This ship is a smorgasbord of sensations. And that is a lot of big words to start day 4 with.

After an incredible day at sea we ended up mooring for the night in Optio Bay in the Coromandel, where I have never been. We woke up a number of kilometres away moored just off Great Mercury Island, also somewhere I have never been. Did I mention the captain jumped overboard yesterday? Apparently there was some weather in the night that “made it a good idea to move”.

This ship makes a lot of funny noises. The boom of a sail as it catches the breeze to send us swishing across the waves is quite magical. The horrendous graunching as they bring the anchor up at 2am right by the pillow is a different kind of magic.

I have just come downstairs after helping scrub the decks with seawater. In the sea. In the rain…… while I was doing it I heard a “woosh” behind me. Now on a boat with people with MS it could have been anything and I mean anything. Do we really want to know? you ask. Turns out it was a sound I have always wanted to hear.

A pod of 8 dolphins surfaced right behind me. There was even a calf. They frollicked around as the boat rocked and rolled as we made our way at various speeds from side to side to watch in wonder.

For me this was a major bucket list moment and I admit I nearly cried with delight. Can you imagine if we saw whales.

The irony of the dolphins is my phone was below decks so I didn’t get a photo. Hopefully they will hang around in the bay with us today and I will get some more. But if not then everyone else had their phones out and I have the memory of seeing 8 dolphins while I was on ship with 40 people with MS from across the globe. Now that is a sentence I never thought I would hear myself say.

Funny what you hear on a ship.

#stillhaventshaved

#isaw8dolphins

#oceanaofhope

Advertisements

Oceans of hope -Day 3

Day 3 has dawned in what can only be described as “a refreshing manner”. 6:30 in the morning and the lights were turned on and an impossibly excited voice belted its way past my one remaining ear plug “ wakey wakey it’s time for a swim”.

“That’s funny” I thought, as I didn’t recall seeing a lap pool lap pool on board.

Then a realised we were at sea. The big cold wet sea. My next thought was not overtly polite.

I’m pretty confident that you can imagine how the next half hour went.

That’s right 7am on a Saturday morning I jumped off a perfectly good boat. What was a little concerning is so did the captain. But he came back so we can’t be that bad a crew.

Yesterday we got underway and one of the coolest moments was when I was stearing the boat with the sails all up.

I remember looking around and marvelling at how everyone had worked together to raise the sails and do other boaty things.

The courage and attitude of everyone is truly humbling. No one is backing down from a challenge and everyone is working together beautifully.

There have been moments when I have wondered what on earth possessed me to sign up to do this. I’m sure everyone has thought that but when I was stearing the ship I knew that this is an amazing opportunity and I am loving it.

Thank you all for the wonderful comments so far.

#stillhaventahaved #jacksparrowjokeshavestarted

#oceansofhope

Oceans of hope – Day 2

Day 2 of the trip has dawned way earlier than I would have liked and the battle lines have been drawn on the ship already.

We haven’t even left port and it is a us and them.

The first battle was fought at the crack of dawn and I am proud to say we won. They conceded to our negotiations and realised that life is too short for instant coffee and we were allowed to do a coffee run. It might not sound like a big victory but I think they sore the logic behind allowing a boat full of people with MS and fatigue and minimal sleep to feed their coffee addictions.

The us is everyone on board and the them is the crew. Is it really a battle, no. We are all in this together and it will be fascinating to see who learns the most over the week. The crew or us.

Once our souls are refilled with caffeine we will be setting sail and beginning the journey in ernest.

What will it bring? I don’t know. What will I learn? I don’t know. Where are we actually going? Also a big I don’t know.

What I do know is that the crew are amazing, the people on the challenge are amazing.

Ane that is why we have gathered from all over the world to live, to laugh and to learn.

#haventshavedyet #oceansofhope

Oceans of Hope Challenge Day 1

The day has finally arrived and after a few minutes madly packing last night, I think I am ready to hit the high seas.

Probably.

Well maybe.

Ok I’m not.

The reality is I am very nervous about going on the Oceans of Hope Challenge and I don’t really know why.  I get dizzy sneezing so i don’t know how i will be on a boat for 5 days.  I will freely admit that I’m a creature of habit and I like my own bed, so I don’t know how I will bunking in shared accommodation.  I have my routines that help me with managing the fatigue and I don’t even know the itinerary beyond “you start here and finish here”.  And let’s not even begin to mention my addiction to GOOD COFFEE.

But the whole purpose of the Challenge is for people with MS to push their boundaries, to learn more about themselves and also to try sailing.  So it is a good thing that I am a bit nervous because it means I care about what I am about to go do.

So this afternoon I will join up with 40 people from across the globe, hop on board the stunning Spirit of New Zealand Tall ship and help crew it for the next 5 days.

Thank you for everyone that has donated to help me get on the challenge.  I couldn’t have done it without you.

#shouldipackapirateflag #iwontshave #donttellmywife #oceansofhope

 

Oceans of Hope Challenge 2018

In November this year I have an amazing opportunity to sail around the Hauraki Gulf with 35 people from around the world with MS. This will be a massive challenge for me as I get dizzy sneezing, so have no idea how I will go with on the Spirit of New Zealand for 5 days.

Oceans of Hope broadens the horizons of people living with MS. The disease can be a real challenge both physically and mentally, and the challenge is designed to inspire people to not just live with MS but LIVE WELL WITH MS.

Over the years I have learnt a lot about my MS and how I can live better and inspire others to do so. I will take what I learn from the Challenge and use it to make sure I do both of us as well as continuing to raise awareness for MS.

If you are interested in helping me to cover the costs of attending then please check out  https://givealittle.co.nz/cause/oceans-of-hope-nz-trip?_ga=2.171927651.2106154874.1535316114-216871442.1534722064#

Happy anniversary

Today is the 8th anniversary of me having MS. In another 8 years my first lesion will be old enough for me to kick it out of home ( if only ).  Mind you it will also be old enough by then to get its drivers license and can drive it self off into the big wide world.

Short of some awesome medical advances in that time it will have to remain where it is continuing to teach me new stuff.

So, in talk show style.  Here is a list of the top 8 things MS has taught me in the last 8 years.

  1. What is MS? –  MS stands for Multiple Sclerosis and it basically means that my immune system is trying to eat bits of my brain and Central nervous system.
  2. You don’t know how strong you aren’t till you need to be – somedays I am in a bit of pain some days a lot.  But I still have to live, love, laugh and learn regardless.
  3. The make the names of the drugs hard to say and even harder to spell  –  A lot of people with MS develop difficulty with their speech so can you imagine trying to say the name of a pill that sounds a  lot like Gonorrhea.  Enough said.
  4. Peoples eyes are the hard to look at–  this might sound like a weird thing to learn but it is true. I’d rather see sympathy in someones eyes than empathy.  I had a conversation at a bbq the other night and was discussing this with someone. “Surely empathy is better to see than sympathy” was the observation.  “No! If they have empathy then they KNOW what I am going through and I wouldn’t wish this one anyone.  Sympathy means they care.”  The look in my wife’s eyes when she checks my face to make sure I haven’t developed a palsy again is something I am always aware of too.
  5. The fatigue is awful –  The best way to describe MS fatigue is “ when you are tired your eyelids want to close,  with MS fatigue your eyebrows want to close”
  6. It is different for everyone.  MS is often referred to as the snowflake disease. While there are some common symptoms it can and will strike everyone differently.  It will wander along at its own pace, in its own little world and do whatever it feels like.  Not unlike a toddler in a supermarket really.
  7. Attitude is everything – I wanted to write something cool and inspirational here to finish with but the reality is it is up to me how I chose to live with MS.  My attitude is something that I can control.

So that is my list of the top 8 things having MS has a taught me in 8 years. But but but there is only 7 I hear the more detail focused people say.  

#8 is by far and away the most important.

  1. People make the difference – If it wasn’t for the love and friendship of those around me I wouldn’t have achieved diddly squat over the last 8 years.  It was the love of those around me that helped me get through the early years when I was really struggling.

Thank you to everyone who supports, inspires and encourages me. You help me to live better with MS.

Dream Big and Live Bigger.  ( I might have to copyright that I think ).

Dream Big – Live Bigger

Three years ago one of the best moments in my life happened – I held the first copy of “Blue Ted’s Day at home”.  For those that don’t know it is a children’s book that I chose to self publish.  The Christmas I gave away the last printed copy I had with “Dream Big – Live Bigger” written in the sleeve.

Things always happen for a reason and over the last few weeks I have been asked quite a few times when is the next Blue Ted story coming out.  Not if – When. Sometimes it is good to clear the mental filters and listen to what the world is really saying.  So #Iamwriting.

Why have I not done it sooner?  Because I have been procrastinating but I came across a wonderful trick to beat procrastination.  Try it for 5 minutes.  Yep that’s it – If you can do it for 5 minutes,  no matter how hard it might be, then you can keep on doing it.

I don’t have a date but I do have a first draft and it involves strawberry ice cream.

Thank you to everyone that has encouraged me over the last three years especially my wonderful wife.

Keep living well.

 
Warning blatant self promotion to follow.  Blue Ted’s Day at Home is available on Kindle at this link HERE