We are very excited here at MS-UK to introduce the first of a series of guest blogs from Robert Munns. Robert is involved with the Oceans of Hope Challenge, which is an adventure like no other for people affected by multiple sclerosis. In this series, Robert will take us on a journey right from his own diagnosis of MS, through to now, when he is sailing and supporting others. We hope you enjoy the series!
Hello, my name is Robert and I’m the event organiser for Oceans of Hope Challenge (OOHCHALLENGE ) which is a week of sailing for people with MS.
Before I get into this series of blogs, I thought it best to give you, the reader some background history about me and my journey with MS.
I am a professional skipper. It’s a pretty physical job and I get to see a lot of amazing places with some amazing people. Some consider my life as blessed.
My journey with this stupid STUPID disease started back in 2008, in Florida, on holiday.
One day, I was sunbathing, reading my book and doing all the normal things you do on holiday.
The next day, I couldn’t see straight. I had double vision. I left it a couple of days, but then decided to go see a pharmacist who thought that it might have been vertigo, but suggested I see a local eye specialist.
He did all the tests and sent me off to have an MRI scan.
At this time, I just thought that I had a temporary blip or thing going on. No real concerns in my little head! The worrying thing happened that evening, when the eye doctor called at my hotel room and told me that he had organised a room for me THAT NIGHT in Miami state hospital for more tests. He believed that I had MS. He advised me to pack my things and go.
This is when my brain goes haywire! I knew of only one person with MS and she was in a particularly bad way. But as we all know, this put the fear of God into me.
Fear is a word that you’ll see I use a lot. Fear, for me, really did affect my life. Even more than the actual diagnosis of MS.
I had another MRI and an MRA scan along with a lumbar puncture, which unbeknown to me would give me a killer headache over the next four days.
Four days later and with ruthless efficiency, the neurologist gave me a diagnosis of MS.
BANG went the sledgehammer into my head…
WHOOSH went the carpet from under my feet…
😱 went my brain…
WEEEEEEEEEEE went the roller coaster as it sped off, out of control down the unknown track that had now started.
I arrived back in the UK, still with double vision to see my GP. Who couldn’t guarantee any appointment with a neurologist in the near future. You must realise that I was in a complete state, crying all the time and unable to get rid of the horror picture in my head of what I knew as “the future” for me.
So I had no choice but to get help NOW!
So I went private for a consultation with a very well respected local neurologist.
He gave me the appropriate medication for the state of utter panic that I was in.
He then set out his plans for me. He seemed to understand the state of which I was in and plodded through his thoughts and his experience. He seemed to draw a bit of the panic out of me and things became a little less traumatic to me.
Things were overwhelmingly impossible to take in.
The following few months were extremely difficult for me with several failed attempts at returning to work.
At times, I was unable to speak (my own private hell) and electrical pulses went up and down my body every 5-10 minutes (I could almost set my clock by them). These symptoms started to fade and after two and a half months I actually returned to work.
During this next period, my boss and I tried to navigate the murky waters of this unknown illness. It was very difficult on both sides, as neither of us knew a lot about multiple sclerosis. During the previous months I had only been emailing work; emails that normally took me 2 minutes to type had taken an hour! And when I returned to work, my physical issues had seemed to have diminished and it may have been difficult to understand how and why I had been off work for so long.
My mental state was still very fragile and I found it very difficult to continue a full day of work. Work that I had found easy, all of a sudden became impossible and confusing.
Fear of being able to cope with the simplest task became the overwhelming emotion that I felt all day, every day.
I was not sure how I was going to be able to deal with life, let alone deal with this stupid STUPID disease.
At this time and not as a complete coincidence, a previous employer contacted me and asked me back to work for him.
This was as a Captain (skipper) on board his private boat called “Big Smile” based in the Mediterranean.
It was work that I knew. It was work that was less stress and it was work that would get me active again.
The stress was the important thing for me to get over. The kaleidoscope of fear and uncertainty that was blaring in my head forced me to deal with only one issue at a time. The stress of life was the number one thing that had to be addressed.
Running away, back onto Big Smile, was the only way of addressing this fear.
They say timing is everything. My boss (who will remain nameless) has very good timing.
The next blog in this series from Robert will tell about time on Big Smile, a respite from fear and uncertainty and attempts at making decisions!