Things Change, Don’t They? …..Fighting Stiff Person Syndrome ♡♡♡


If I told you that this disease has not changed my life in any way …or that of others who love me….then I would not be telling you the truth.  What exactly do I mean. ….well let me try and explain myself my beautiful peeps ♡♡♡

When I was growing up. I was a typical young lady who chased rainbows and followed the wise words of the great Martin Luther King “I have a dream”. I was always so head strong, and believe me, nothing was going to prevent me from achieving my dreams. I lived my life as if it were a fairytale….loving every precious moment and those who shared my life with me.

I grew up with just my beautiful mum and amazing big sister… as my dad passed away when I was just a toddler.  How I adored my sister Lisa,. how I wished I was like her. I was forever secretly borrowing her clothes or sparkly new shoes lol ( as all little sisters do ). Its quite ironic really, because as we grew up, I found out my sister wished she was more like me too lol. Its quite peculiar , how one puts another on a pedestal, don’t you think?. 

I used to study with intent of becoming someone of importance….someone who could possible make a difference in the world…..if only to a few single souls, I would have achieved my dream. I was aiming to become a solicitor, specializing in Family Law…..helping those who had lost their way…..fight for the help they may need.

As well as studying hard , I also played hard too. I loved sprinting, left wing was certainly my strong position in Hockey……my passion for horses thrived as I grew, and riding became a part of my life that always made me smile. But above all, dancing was my strongest fulfilment of all…….how the music made me feel so free. Of cause , as well as study, hobbies, a world full of treasured friends….I worked hard too, to support myself financially through university. How I loved my friends dearly…..just chilling, laughing (sometimes the odd tear), smiling, enjoying each others company. One of my closest friends was JJ ….. who’s JJ ? Well see the guy in the photo with me at the hospital….. that is him……otherwise known as Jason, my husband. I met JJ when I was just 12 years old (even then I knew he was special somehow). It was a beautiful Summers day, and I was at the near by park with my friends……that was the day I  met JJ…..the cool kid, afraid of nothing, pulling stunts on his bike that were short of crazy lol. We were so very, very different… chalk and cheese lol…..but how does the old saying go “opposites attract” ? From that day, we were pretty much inseparable growing up. We became such good friends…..he would turn to me about a breakup with his girlfriend….I would do the same over my broken down relationship……..sometimes we even dated each other in-between. Despite, the issue that we were on and off like a tap together lol, our friends always regarded us as “Nez and JJ” …..even after not dating for quite a length of time, but always being able to turn to each other, no matter what…..our tight circle of friends knew we would finally settle down together.  And yes they were right lol….in 2004, November 13th we became husband and wife at St Peter’s Church where we said “I do”. That day was almost ten years ago…….but how my fairytale has changed. Why has it all changed so much????

Before I became ill with Stiff Person Syndrome… life was perfect. I was a post graduate, with three precious tots, married to my childhood sweetheart,had an amazing circle of friends, and my surrounding family who I loved with all my heart. But then the ghost took over…..stole pieces of me and my life rapidly over a short period of time. I was no longer capable of being a mummy to my three beautiful tots…..I lost my daily independence (no longer able to do the simplest tasks alone) ……. Jason took over, running like a hamster on a wheel, 24/7, no time to rest. I became captured  in my own body……you wouldn’t believe how hard I have fought against Stiff Person Syndrome… my screams to be released have fallen silently. My friends drifted, understandably as they had life’s that needed to continue. My external family frightened, not knowing what to do to help. Fear of the unknown overtook my, what was once a perfect marriage, to the brink of smashing it into irreplaceable tiny shards. The harder I fought, the more the ghost took…..until I feel alone.

I look back and see my JJ and I walking across the beach hand in hand, the warm breeze against us…..picking me up and throwing me in the water… both laughing until it became impossible to laugh any more. I see us led on our picnic blanket, my head on his chest, soaking up the rays of sun, listening to his heart beating, I remember feeling so happy and safe, I never wanted the days to end. I remember vividly, quite recklessly, sitting outside the window of the car, music blasting, holding tight to the roof as JJ putting his foot down onto the accelerator… was me against the wind…..feeling so free as my hair blew back from the speed, my eyes twinkling with laughter. You wouldn’t believe how happy we were until I got hit with SPS.

Precious Jason has tried so hard to juggle so many things at a time, he is burnt out bless him. Our tots cry for their mummy. The same can be said for my beautiful sister who has become so scared of losing me, she is at her wits end. My sweet mum, as sick as she is still tries to hold everything together , but her eyes speak a thousand words of her worries. My nanny and grampy are at a complete loss…..wondering if they will ever have their granddaughter back. My goodness, it is heart wrenching to see how this disease is destroying my closest family.

So you see, the ghost isnt just hurting me….but its attacking those who love me too. I would sell my soul, if it would abolish Stiff Person Syndrome, so I could stop it hurting my family. I wish I had the power to time travel…..but not to the future, but to the past… a time when the ghost didn’t exist and I could save my family from so much pain xxx