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

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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…..like 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…..my 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…..how 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…..us 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…..it 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…..at a time when the ghost didn’t exist and I could save my family from so much pain xxx

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4 thoughts on “Things Change, Don’t They? …..Fighting Stiff Person Syndrome ♡♡♡

  1. This is heart breaking for me to read. My (ex) partner is going through the same. I wish I had read this before our relationship ended due to my ignorance. Your husband sounds amazing, I didn’t have the courage to accept the card she had been dealt xx

    Liked by 1 person

    • Hi my friend
      Please don’t be so hard on yourself. I know from experience that SPS can tear relationships apart so quickly, like water through a sieve. Its such a cruel disease that somehow manages to get its claws into those closest to you. Yes you are right in understanding that you ex partner needed you more than she had ever done before when she was diagnosed with SPS, but everyone copes differently, and i guess it was to hard for you to face, no matter how much you loved her. Maybe by reading my blog further, will help you even more.
      believe me. it hasn’t been plane sailing for me or my family either. its been extremely difficult for Jason to deal with, and i would not telling you the truth if i said it hasn’t affected our relationship. But he is always there when the going gets tough …. but the SPS has practically destroyed him. I feel so guilty for stealing his happiness from him….. but i cant change the hand i have been dealt ….. neither can your ex partner. All i can do is let him go, if that will bring him happiness again….i guess time will tell.
      i guess what i am trying to say is, i understand from your point of view and that of your ex partner. its difficult to suffer and fight the ghost everyday ….. but i also know , its difficult to watch the person you love suffer and fight the ghost everyday.
      please if i can help you in anyway, just drop me a line
      love
      Nerri xxx

      Liked by 1 person

      • I have read quite a few of your posts, it really did help my understanding. I still have a long way to go though. Acceptance is thr hardest part for me especially because she used to be an absolute live wire and always on the go! But I’m getting there, even though the relationship is over. Xx

        Liked by 1 person

  2. i was hoping that maybe, after having time to think, that you and your ex partner could somehow work through the crewel change that SPS can bring. Unfortunately, i guess this is not always the case 😦

    Its good to hear that you have taken the time to to read a little more of my posts. i would think that your ex partner is feeling quite similar to myself, as i used to be so active and constantly on the go. Its a massive change in life style for you and her both to accept. in all honesty, i don’t think i will ever accept the changes that SPS has brought upon me …. and neither will Jason. Its quite odd really as I still look like the girl he married ….. but my body is no longer capable of what it used to be. i was once a “live wire” too.

    i hope that you and your ex partner are still able to remain friends? maybe you can still offer her support, kindness and understanding via friendship? i hope so xxx

    Like

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