I Wish I Had A Magic Wand To Take The Pain Away….Stiff Person Syndrome (part 1) x

‘One in a million’….’.Ground breaking science’…….’a medical marvel’. This is how some people i have met throughout the last few years of my illness have described me. But i do not wish to be unique or rare.
what i do wish, is for the pain to stop, to have the opportunity to be a mummy, to be able to chase rainbows and aspire, to accomplish my dreams. However, i do not have this privilege. Instead, i live a life of pain, seclusion and being unaware what may become of my future. I am a prisoner in my own body, screaming to get out…..but nobody can hear me….i lay here suffering in silence.
This video is part 1 out of 7, that my husband recorded yesterday (2/4/14) . Jason had to stop a number of times to help me breath, prevent me choking and to stop the strength of my spasm from pushing me off the bed.
Throughout the duration of the spasm, my BP rose to 219 as the muscular contractions were putting so much physical stress on my body , compromising my heart function. My oxygen level dropping to 77%, my body struggling to increase in o2 levels, even with the assistance of 6 liters of oxygen via home o2 canister . (Jason was increasing and decreasing amounts when necessary).
By looking closely at this particular snap shot , it is visible to see my muscles in my arm, legs, feet, hands, fingers, abdomen, chest throat, back, neck, face ,forehead, jaw and eyes…..contacting, cramping, in spasms. My body is in a never ending spasm episode, that feels like every bone is being snapped, each muscle torn, my skull feels like it is in a vice being crushed, whilst in strong clenching contractions. i am hardly able to swallow as my throat spasms, causing a pool of mucus to gather in the back of my throat, resulting in me choking, vomiting blood at times, or brown congealed mucus.
Why such a detailed account, ? its not the most pleasant of things to read or watch, is it ? but i feel it is important to share ‘ a day in the life of Nerri’…..,.. one in a million, fighting the ghost of Stiff Person Syndrome.

My wish is to live……my dream is to wake up one morning and for this nightmare to be over……my aspirations are to be able to hold my tots and Jason close, without crying in pain……I pray with all my heart and soul, that i will make it through another day XXX

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6 thoughts on “I Wish I Had A Magic Wand To Take The Pain Away….Stiff Person Syndrome (part 1) x

    • Anna , your prayers are beauty in themselves and i am so very, very appreciative, thank you.

      However, just a quick explanation. my only hope now is a stem cell transplant. it is not possible to have this much needed medical treatment given to me here in the UK as it is such a rare illness, not much is understood about it, however there are clinical trials being conducted in a few places abroad. Therefore, i have to privately fund this, not sure how yet as its going to coast a couple of hundred thousand pound. So i need to set up fundraising account and attach it to my blog ASAP. so if you could spread the word, that would be an enormous help sweetheart.
      much love
      nerri
      xxx

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    • well sweetie, im not classed as “a typical” any more. my symptoms are progressing quickly, having a server impact on my life from day one. i have been told that i am like trying to fit a square peg in a round hole…..my symptoms over flowing the box of stiff person syndrome.
      stiff person syndrome is very serious hunnie, particularly if one is not provided with the correct medical treatment plan.
      the spasms that are experienced during an episode can become strong enough to fracture or even break bones. it causes horrific consequences with the respiratory system, possibly even leading to death.
      to try and prevent as many spasms as possible, i constantly remain hunched up in my bed……no light, sound. movement, my body cant even tolerate the beautiful laughter of my children, i can not cuddle them because it hurts so bad. i have tried all different tactics, like pacing, pushing until i fall to the ground. no matter what i try and participate in , like an average person would, it leaves me in soul destroying spasms as you can see in the video clips. they can occur up to 4-5 times a day, lasting from minutes to hours each time
      much love
      nerri xxx

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  1. I cried when I read this….I know exactly how you feel! I’ve never come across any one like me before. I feel so much for you Nerri and can only pray that you will get some relief and be able to cope with each day. Much love xxx

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    • hi Jac
      are you like me my daring? Please sweetheart, to be able to connect with someone who’s illness has rapidly deteriorated like mine, who endures such unique spasms……it would mean the world to me to communicate with you further. i only know one other person , who’s disease pattern has developed like mine. he is a very special dear friend of mine, we have stuck by each other throughout this rocky journey for a number of years. we are like a mirror image of each other, always being there for each other. Apparently my case is very complex, i am no longer a typical of SPS. if you experience a life like mine, please Jac….just knowing you understand, means so very much.
      much love
      nerri xxx

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