Watch “R.E.M. ~ Everybody Hurts” on YouTube

R.E.M. ~ Everybody Hurts:

My fight against the ghost of Stiff Person Syndrome continues.  I haven’t had any hospital treatment since December 2013. I live my life in my bedroom alone.  I am unable to tolerate  moment,  sound, light,  vibration. 
The beauty of my tot’s laughter causes so much pain,  it leaves me sobbing into my pillow.  All I wish for is to be my tot’s mummy, to hold them, spend time with them. ….However , they are so close,  yet so far away. It almost feels like they are behind a sheild of glass, I can see them,  but I am unable to care for them, run with them across the sea front,  watch Olivia-Beth in her performing art’s shows or see Mollie-Jai and Dylan swim.
I am missing their childhood,  whilst I am hunched in a ball in my bed,  cocooned in four walls of silence, in an attempt to decrease the impact of yet another spasm.

Without the correct treatment,  it is only a matter of time that Stiff Person Syndrome robs my children of their mummy.

Will the next spasm leave me laying in the arms of the angels ???  Xxx


10 thoughts on “Watch “R.E.M. ~ Everybody Hurts” on YouTube

  1. Hi Colleen
    I am so scared of leaving my children without their mummy.
    They have the most wonderful daddy, but they need me too. In all honesty, I need them more. I can not bare the thought of never seeing their angelic little faces again xxx


  2. Your children are not goimng to lose their Mummy, you are too strong for that!! Hang in there and stay strong and positive, you will see their faces for a long time to come x


    • Hi Bob
      I hope you are right my friend, my health is deteriorating pretty fast. I have always been very positive, but I am becoming so poorly, it’s hard to breath, swallow, open my eyes.
      Thankyou for your kindness and strength
      Much love Nerri xxx


    • I hope you are right my darling. Jay hasn’t long woke me since I cried myself to sleep after my spasm today.
      He is going to upload some snap shots so you can see.
      Carolyn, im scared xxx


  3. You are a strong woman hunnie..with all the help and support of your good friends and family , you will get through this.
    Love and hugs as always:-) xxxxx


  4. My husband fights this same fight. I hope you find a doctor that will get you on some anti-startle medicines to get that part under control. I used to have to barely scratch at the door opening prior to my husband getting anti-startle treatment. He still goes in and out of the hospital often but when home he can even hold his grandbabies and handle them crying. I wish I could take away your pain, and his, but I will keep doing the next best thing; Ask God to keep his hands on both of you.

    Liked by 1 person

    • You are very kind and very sweet Valerie. Prayer is a wonderful gift.
      Please give my love to your husband, im so sorry he has to fight this too. ….but I am thankful he is receiving treatment that helps.
      Much love
      Nerri xxx


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