Monday 24 February 2020

A 24 Year Promise: The Brighton Marathon

At the age of 13 I kept falling and no one understood why.

I was still young yet the best hospital to deal with me was an adult hospital.

I was, with hindsight, out of my depth. At night it would be filled with alarms, electronic noises and cries of distress.

Mum stayed in hospital lodgings but could only visit during specific times. It was difficult but I spent most of my time trying to ignore the harder moments.

When I wasn’t reading I was watching whatever was on the Ward TV.

One Sunday mum was called in and we were told my diagnosis. (Albeit the wrong one for the next 10 years!)

There were 2 clear points:

1. My muscles were deteriorating and there was nothing they could do.

2. I would only live for a few years.

I can tell you that I was scared.

Yet, I didn’t show it. I laid there, shut my mouth and kept quiet.

Mum clearly shaken, walked off to phone my dad and didn’t come back for a couple of hours as it wasn’t visiting time.

Whilst trying to process it the ward TV was on and the London Marathon was playing.

I sat and watched a variety of people tackling it and something inside me stirred.

I mentally took note and declared that the doctors were wrong, this wasn’t going to be my life and one day I will be one of those people to run the Marathon.

Of course, with maturity and hindsight I see how naive it was but it pushed me forwards. It made me want to fight, to push myself to be stronger and to tackle every impossible milestone that I faced.

I got stronger. The diagnoses and expectancy changed. Every year I would watch the Marathon as a reminder to keep pushing.

What we didn’t know was the muscles I was “building up" were “fake” results. I was treating and fighting a wrong diagnosis. The medication, hormones and bodily age was growing and changing my muscles not the effort I was making. 

Muscular Dystrophy, particularly FSH, has a fine line. Do too much and I damage my muscles. Do too little and there’s no resistance against deterioration.

I was still falling regularly, I had lost strength in new muscle groups and my body wasn’t reacting the way it should.

The effort I was undertaking wasn’t resulting in core strength to do a marathon.

At the age of 24 I was diagnosed with FSH. The new diagnosis meant that I could never achieve my goal that 13 year old me had set.

I needed to play the “MD game” and find that fine line.

Yet, I still held on to the original message; Don’t allow the doctors to be right, fight and prove them wrong. It took a few years but I found the peace I needed.

Last year I had 5 friends taking part in the London Marathon. I decided that I would support those taking part.

At the end I congratulated them for what they achieved.

Until Natalie.

As everyone knows Nat and I have a great but “harsh” friendship. The type of friendship that can use banter; something that is clear if you ever search the comments on this blog!

My “unusual” positive support of Nat made her question why I was being so nice.

So, I relayed a small portion of the above.

A few days later Nat messaged and asked if she could help complete my dream. She would run and push and I would sit in a chair being a talking snack trolley.

So we started planning.

Sadly, the London Marathon doesn’t accept participants to take part like that. So what should we do?

We decided to try a different Marathon.

We also had the dilemma on what device we would use. My old manual wheelchair wouldn’t be good enough. We had to find a sports one to use.

However, after talking to Ability Plus who sourced my new power chair and explaining what we were wanting to do they agreed to give me a sports chair for the event.

Subsequently, I’m pleased to say that Nat and I will be taking part in the Brighton Marathon on the 19th April 2020!!

We will be taking part as a charity position and racing for Marie Curie.

Marie Curie has always been a charity close to my heart.

Despite my stubborn efforts against my doctors I am not in denial to where my diagnosis could go. There could be a point when I need end of life care.
Marie Curie does this.

They not only support the persons individual care but also support the families who watch them go through it.

For me, supporting Marie Curie is like a payback to what they could do in my future.

So, after 24 years of waiting this April my promise will come true.

I would love if you would consider supporting us in this and donating to Marie Curie with our Just Giving page  or by sharing our donation page for others.

1 comment:

Plutonium Sox said...

Any chance you fancy doing a sponsored silence at the same time? I'll sponsor you.