For-Get-Me-Not (the reason for my absence)…..Stiff Person Syndrome xxx

(A brief over view for my two year absence)

When the beauty of the authentic spirt begins to flicker again …. a shimmering smile breaks through the tears …. the acknowledgment that the heartache is painful, but its worth it to continue life’s journey….. to finally understand that my very existence has led me to this precise moment in time. Despite the deepest , darkest nightmares of the past 8 years of my reality, the petrifying fight to live has shaped me into the person I am today.

“Be the change you wish to see in the world” ~ Mohandas Gandhi

The battle of Stiff Person Syndrome, has become the ghost that overshadows me …. but it does not define or determine my worth. The ghost has presented me with a valuable insight, which through my suffering, has blessed me with the opportunity to present hope to other dear souls who fight this rare disease.

Fighting against the ghost is like surviving on a battle field of demons. However, in darkness, light always prevails …. even through the bleakest of times when it feels like the pits of despair are engulfing. Yes, the journey against the ghost is barbaric, however my dear ones please know that you are not alone. For in the darkest of times, there is always hope. With the grace of God, he has walked with me and protected me from the claws of death …… in January 2017 , I become the first lady in the UK with SPS, to undergo a Haematopoietic Stem Cell Transplant (HSCT), a tailored life saving treatment  UNSUPPORTED by the Welsh NHS.

I am determined, with every bone in my body, to raise awareness of this deadly disease ….. shake up the national health authority , and open their sleepy eyes to the importance of making HSCT available for SPS warriors. There are no excuses for life’s to be lost, or for such server suffering to be endured …. when there IS potentially a life saving tailored treatment to push the severity of the disease into remission. I will not sit on the side-lines and fade into the distance, whilst other precious people suffer in silence. I can not bare the thought of another soul going through what I have …. not only the person with the disease, but also the horrendous life changing darkness that falls on their spouse, children, family and friends. The ghost does not only try to suffocate the disease riddled soul, but also attacks and destroys everyone else in its path. Sadly, I only know far to well the catastrophic torture of this disease ….. it dug its claws into my marriage, left me unable to raise my precious children, drove the deepest wedge between myself and my family, banished the love of every friend I ever had, stole my home, smashed my dreams and future career. What was once my fairy tale life , became a prim e juicy target, for the ghost to hijack and torment it into to a living nightmare. At this current time, I am18 months post HSCT, still in recovery and trying to dampen the fires in the battle field…..but through hope and faith, I continue to wake up each day, and through the tears I cry from the heartache for my children, I praise and thank the lord that I am still alive. I deeply believe one day in the not so distant future, I will feel the warmth of my children in my arms again….my marriage will be restored, the love of my family shinning upon me, and hear the laughter of my friends once more.

My purpose is to continue to share my journey  with you ….. raise awareness of this disease …. to be someone that you can turn to who understands you …… to fight for the acceptance of HSCT as a treatment for Stiff Person Syndrome by the NHS/medical insurance cover…… but above all, to give you hope ….. anything is possible when you believe.

wishing you love and light my dear ones …… My story is to be continued xxx

2 thoughts on “For-Get-Me-Not (the reason for my absence)…..Stiff Person Syndrome xxx

  1. You give me hope even though I feel and see none in sight….I hope your enjoying your life honey. Thank you for sharing your pain…..I cant take it anymore trying to fight and explain for myself let own even for my children….I’m tired….

    My insurance would never cover that….not surr I’d make it either….my true love is tired…we just had a baby and hes almost a year and walking talking 5 teeth….so hard….i miss my life…my home…my body…

    Liked by 1 person

    • Hi Cierra , please let me start by sending you a big hug 🤗.
      I know the daily fight seems impossible alot of the time …it can be very frightening, exhausting and lonely (not just for us, but for our loved ones too) …. I truly understand deep within my heart the feels that are tucked up inside the words you have written to me. I know you are facing so many challenging day after day, but you will be okay, you have strength deep inside you that you never knew you had …please believe in yourself and give yourself credit for the warrior that you are.
      You must always have hope….it is magical and will pull you through each day. My life is still a daily struggle in many ways, but it’s a little easier to manage compared to what it was.
      It breaks my heart to hear your sadness whilst I read your words….hold on sweets, know you are not alone…I’m right here fighting with you.
      I understand the issues with your insurance. I had the same problem with the NHS … so the procedure had to be privately funded. As you can gather from my personal account fighting against this disease, it tore my life apart ….please Cierra, don’t let the same happen to you. I know you and your precious love are tired from all this, but do not give up, don’t stop fighting this disease , you are stronger when you fight as one. I made so many mistakes because I was frightened of what was happening to me, I didn’t know where to turn or how to cope …. I lost everything. It doesn’t have to be that way for you. You got this sweetheart…..I believe in you.
      Love and prays 🙏💗

      Like

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