I Wish I Had A Magic Wand To Take Away The Pain……. Stiff Person Syndrome (part 3)

so my spasm continues………. After i have finished vomiting, Jason begins to film again, but i am still retching a little.
As you can hear i start trying to communicate with Jay as my Jaw slightly releases, but my words are slurred and i stutter. If you notice, my eyes are twitching, but still clenched shut, i am unable to open them. The Stiffness has released from my arms at this point, but the cramping continues in my skull, eyes, trout, bottom, legs, feet even my toes. However, i am breathing unaided at this point, but the pain is horrendous all through my body.

In all honesty, the person i am feel so much sorrow for is Jay. It is difficult for me to watch myself to comment on the clips. It gives me a churning sensation in my tummy, almost in disbelief, that the person i am watching …..is me.

Can you imagine how Jason must feel, watching his wife go through this pain over and over. Never knowing if this is the time he his going to lose me. I sob for him, what he must be thinking, the fear he is feeling. My heart truly breaks for him. Jason is only 35 years old, he is a young man who should be loving his life, his tots, thriving in his career. Instead he had no option but to resign from his occupation of 11 years, give up his dreams of having his own driving school business. Its not only my dreams that have been smashed in shards like a dropped glass, but Jason’s too. He has literally given everything up for me to be my full time carer. Not only his career and dreams, but also his hobbies. He used to love to run, cycle, play football with his friends from work, plus the odd round of golf. However, since the day i became sick, he dedicates himself to me and our children. He has no social network, no friends anymore that pop in for a coffee to see him, for the exception of a select loving few. its so very very sad.

How do i make him see, how precious he is to me ?……there is no words to even be able to begin to express my gratitude. Jay often looks me in the eye when i question how much he has sacrificed for me, but he looks me in the eyes and always says the same thing…..”till death do us part Angel, and not even then will i let you go, i love you” xxx


2 thoughts on “I Wish I Had A Magic Wand To Take Away The Pain……. Stiff Person Syndrome (part 3)

  1. I am so sorry you are having to go through this, it’s so wrong. Hopefully the help you desperately need isn’t too far off now. Keep fighting until then.
    Having met both of you, I can confirm you are BOTH truly one in a million. You for being as strong as you are and fighting this tooth and nail, and Jase for loving you and caring for you so well. With all you’re both going through, neither of you have lost your sense of humour. I just love you guys (both of you) and am very proud to call you my friends xxx


    • my darling Carolyn
      your words of strength and kindness mean so very much to me. as you know Jay and i are at a loss. we are both scared, fighting as hard as we can. but i am getting so weak now my sweet girly, i wonder to myself , how much longer can i hold on. I am extremely fortunate to have you standing with me, without you and a small number of true loving friends, none of this would be possible. you know how much i need the stem cell transplant, its my only hope now. i hope you are right and we will achieve this. and yes sweetie Jay is one in a million, but in a different way. he calls me his Angel, when the real truth is….he is mine
      i love you with all my heart
      nerri xxx


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