Does Anyone Truly Understand ?……..Fighting Against Stiff Person Syndrome x

Led here all alone, staring at the same four walls, week after week, month after month. My body physically incapable of the simplest of tasks, my mind struggling to stay awake. It makes me wonder…..Does anyone truly understand my daily fight against Stiff Person Syndrome ? 

usually so upbeat, full of glitter and sparkle…..but sometimes when realism hits… hits fast and it hits hard. I am one to believe that anything is possible if one carries their wish strongly enough  in their heart, and fights with all that they are.  However, I have fought, smiled and silently wished , time and time again , that I am able to beat the ghost of Stiff Person Syndrome.

My campaign to raise awareness  for others who are suffering in silence with Stiff Person Syndrome and also to continue my fundraising efforts for a trial based Stem Cell Transplant  overseas , seems to have hit stale mate. Which makes me wonder to myself, what am I doing wrong, or more to the point, what should I be doing differently?

If only the world could truly understand the devastating repercussions for someone with Stiff Person Syndrome ………. the rare one in a million auto immune disease.  I can only speak of my own experiences with the devastating progression of living with this illness, but I know of other sweet, beautiful people world wide who battle on a daily basis to stay alive.

Close your eyes, picture your life as it is now…..your precious family, friends , high flying career., freedom, independence…….its a very beautiful picture isnt it?  I used to have that treasured fairytale too.   Now blink ……that’s how quickly it happened for me , a blink of an eye and it was all gone.  Led here in solitude,  crying for the pain to stop, grieving for the perfect life I had.  Any type of over exertion leaves me in a complete heap……just typing on the laptop from my bed, is enough to cause server repercussions…..maybe my body goes into paralysis, or into a seizure/spasm, that I fall asleep unknowing ,  or the pain is so bad from trying to type im left sobbing.

Its warm in my room, I have to be warm or my body will stiffen like a metal rod……however , I feel to warm, but am unable to have my window open, because the cool breeze hurts my skin, but also the noise from outside causes body pain….any unexpected sudden noise causing my startle response to react.  maybe a car horn, a motor bike going passed, anything unexpected can cause my body to stiffen like something made of marble……and these nothing I can do about it. Can you imagine , not even being able to feel the fresh air ?  I am unable even to wear clothes as the touch of the fabric on my skin makes me feel like my skin is on fire. I have had to live in very loss pyjamas for years. Even the droplets of warm water from the shower hurts my bare skin. Can you imagine living this way ?

My precious children have to be kept behind the closed door, because the sound of their beautiful voice’s, singing, laughter……hurts my body so badly. Their sudden movements , twirling, dancing….causing enhanced noise, vibration……triggers my seizures or spasm.  Can , you imagine what it is like to have to be kept away from your precious children ? to be given the choice to be able to hold them, share in their excitement of their day because their happy voices cause detrimental effects to my body. More importantly, can you imagine what it is like for my magical, precious children to be kept away from their mummy ?  they are still so little, only are 5, 6 and 13 years old.  Like I said to an old friend the other day…..when you come home from work tonight , hold your children extra tight, and tighter again……because you never know when that moment may slip through your finger tips, just like it did mine.

Just writing from the heart …….through my sparkly smile, please see the pain that hides beneath.

Imagine if this was YOUR life……would you be fighting for a cure too???

2 thoughts on “Does Anyone Truly Understand ?……..Fighting Against Stiff Person Syndrome x

  1. My son was recently diagnosed with stiff person syndrome.. He is 23 and has a 9 month old son.. His fiancé has no idea what its like for him and I just want to die for him because his anger is so bad and he says he doesn’t remember it or if he feels getting angry he cant control it. . Reading this post makes sense to mw because with noise he just snaps! Thank u so much for posting this at least it makes some sense to me.

    Liked by 1 person

    • Hi Malynda
      Im so glad that my blog has been able to help you see a little more clearly ….. what your son is experiencing and why he reacts the way he does at times. Maybe it would be helpful for his fiance to read it too.
      You son is so very young … I know how you feel, as my mum says your same words to me. I was a little older when SPS stormed onto my life …… but I was young too, my late 20’s, and I have been fighting it for the last five years.
      I haven’t written here for a while ….. change in life circumstances, treatment back and forth the hospital …… and quite honestly, the fear of facing the reality of my life. However, here I am , writing with my sparkly smile 🙂 because knowing I have helped you, just a little, makes my fight seem worth while.
      Please know that I am here for you, you son and his wife to be …. if ever I can help heal your broken hearts somehow. My little boy was eight weeks old when I first became ill, so I understand deeply what your son is going though. The desperation of wanting to be with his little one, yet his body is unable to tolerate the noise no matter how hard he tries …. which in turn causes frustration, hurt and sometimes anger.
      Please let your son know that he is not alone …. as I write being one in a million also.
      Sending much love
      Lindsay (Nerri ) xxx


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