From diagnosis to Denmark - don't stop me now

But, my story isn’t so much about my work, but my life with Multiple Sclerosis (MS).

MS is an incurable auto-immune disease that presents itself differently with each patient.

I was diagnosed with MS in April 2016, after noticing some strange things happening with my body.

Everything was innocuous to start with; some leg heaviness, some night blindness, some lack of balance –nothing that I really tied together as being a problem.

I was 52 and obviously old age was kicking in.

In December 2015, another seemingly minor occurrence, kicking two toes on a door, gave me a “stubbed-toe” sensation, but it never went away.

In fact, it spread over my foot and up my leg and it was at this point I saw my GP, who did some initial tests, largely regarding balance.

A computerised axial tomography (CAT) scan was done, followed by a quick referral to a neurologist. A magnetic resonance imaging scan (MRI) soon after confirmed a diagnosis of MS. I was lucky, as it was an early diagnosis.

It took around 12 months for a suitable treatment to be found, that my body would accept. By this time, that “stubbedtoe” sensation was up to my chest and spreading into my hands.

This was not going away and these days I receive an infusion every six months to keep my symptoms under control.

In January 2018, I was reading the MS QLD newsletter, where a very small story on the last page caught my eye about an event called the “Oceans of Hope Challenge”, being held in New Zealand later that year.

This event was designed to bring sailing to people with MS and was being held on the Spirit of New Zealand tall ship, sailing for a week in the waters around Auckland. The concept of the event caught my eye, this was something I could still do.

I don’t have a history of sailing, but I was drawn to the idea.

My disease at this point had progressed but then regressed following treatment – I still had mobility, albeit with some wobbles, I had arm strength still but I had lost reading vision in my right eye, which is still the same now.

My family was totally supportive of my intention to head to New Zealand and it was just a case of time and money now.

An adjustment to my leave was approved, and I managed to gather enough funds to cover the trip.

That was it, I was going sailing.

Oceans of Hope was started by Danish doctor, Mikkel Anthonisen who had been treating a patient who was building a sailing boat when diagnosed with MS.

His patient thoughts his dreams of sailing were over, but with encouragement from Dr Anthonisen, he continued to complete his boat, and managed to fulfill his dreams.

Dr Anthonisen then decided to take this idea of sailing for MS patients further and in 2014/2015, the sailing boat, Oceans of Hope circumnavigated the globe crewed by people with MS, along with a skipper and first mate.

The crew stayed with the boat from legto-leg and changed crew along the way.

MS patients had to complete all tasks associated with sailing around the world – raising sails, navigation, cooking, cleaning – all aspects of sailing.

The beauty of a sailing boat for someone with MS, is that there are many grab points and hand holds around the boat, so mobilising becomes less of an issue.

People with MS often feel they are unable to live a normal life, unable to mobilise normally, and often experience depression because of this.

Being able to participate and contribute to life on board a boat/ship, makes you feel less disabled, and more able to participate in activities and this was certainly the case for me.

My goal on boarding the Spirit of New Zealand was to determine if I was normal for someone with MS.

I had never met anyone else with MS, so did not know if what I was experiencing was “normal”.

I quickly discovered I was very normal for an MS patient and this took a great load off my shoulders – I was okay.

Following the NZ challenge, I wanted more. Something inside me was stirred.

I had spoken to some other sailors about a previous challenge in Turkey and a few other sailors and I decided if a challenge in Turkey was to happen again, we would go.

In October 2019, five of us travelled together to southern Turkey, to sail in the Mediterranean Sea, in the waters around Fethiye.

What a trip! We sailed on 45-foot sailing boats that were very luxurious, compared to the large wooden tall ship in New Zealand.

We spent three weeks in Turkey, taking the opportunity to visit Gallipoli, Istanbul, and hot air ballooning in Cappadocia and it was an amazing journey.

Following this was a journey back to New Zealand, this time aboard the worldrenowned racing yacht Steinlager 2, an 86-foot ocean racing yacht.

It was very different sailing, but also very fast and very exciting. Obviously, my appetite was whetted. I was hooked and looking to see what was coming next.

Unfortunately, no one saw Covid-19 coming and along with the rest of the world, all sailing plans were put on hold and I wasn’t going anywhere.

Fast forward to early 2022, and the world has started opening again.

We refer to Oceans of Hope as the “mother-ship” as this is where it all began, and something was drawing me back to her. Finally, I had an opportunity to sail again.

I recently returned from three weeks in Denmark in July comprising two weeks of exploring Denmark by train by myself, and a week sailing.

What a great trip and a great country to visit!

The Danes are very accommodating, and they live a life very similar to our own and their summer weather is much like a Brisbane winter, even warmer.

We sailed with a crew of five, with six MS patients on board, some Danes, some Dutch, and a lady from Portugal. We had a great time and new friendships grew.

We sailed overnight from Denmark to Sweden, where we stayed 2 nights –it was a new world for me, somewhere I’d never been.

Had someone told me five years ago, this what I would be doing, I would have thought them crazy as my life was very safe, very secure and very risk free.

The Oceans of Hope program has been life changing for me.

It has given me new hope, a purpose for doing what I do, and certainly a view into my future life – I have discovered “me” again.

As for how I manage work with MS. Well, initially it was a matter of adjusting my shifts, so that I was only doing one night shift, not two and when I went to Laru dispatch in Kedron, my latest finish was midnight.

Now at PTS my latest finish is 2200, so home by 2300.

A big factor for me, is fatigue. So, night shifts are out, doctors’ orders. I manage to work full time, and a certain amount of overtime and I seem to be surviving this way.

When not working, I do have my share of nanna naps. I just know to stop when needed.

With the sailing, while it doesn’t directly assist my work, there are psychological benefits to knowing that working hard will bring some reward, eg, an overseas trip.

It gives me a goal to focus on and I guess, some resilience training, to know I can overcome adversity. There are always challenges while sailing, solutions to be found, difficulties to endure.

What is my next move? I am off again to New Zealand in November, sailing on Steinlager 2 for a week and a great chance to catch up with some old friends, and certainly make some new ones.

We are hoping to hold an event in Australia in the future but in the meantime, Turkey sounds nice next year.

I have to take every opportunity as it presents itself as I don’t know what course my health will take, or what the future holds for me.

If I have learned anything from this, it is firstly to listen to your body. If something seems off, get it checked. Take any opportunity you are given, as it may never come again.

If anyone has MS or a friend or family member with MS, please consider reading up on the Oceans of Hope, or the Oceans of Hope Challenge UK. Even if you have never sailed before, it doesn’t matter, you will fit in.