‘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