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

R.E.M. ~ Everybody Hurts: http://youtu.be/HoG2i_h420A

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

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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

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  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

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    • 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

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    • 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

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  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

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  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.

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    • 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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