Reaching out ….. fighting against a ghost xxx


As I stood, out of my wheelchair ( Mid 2015), soaking up the sparkle of London at night , for a few moments before resting again  ….. thinking of the fight ahead of the Stem Cell Transplant, I knew in my heart I could beat the ghost, and eventually help other suffers do the same …. my smile was relentless despite my on going inner pain. As each day I became stronger and stronger , with the support of amazing specialists and an excellent ongoing treatment regime ….. the aim of the final end goal, possible Cure/remission trial programme ( SCT ). Treatment ( IVIG) held me in a strong enough place to stand on my legs for short periods of time, breath , mange light, sound, touch, movement, controlled stiffness, less server spasms etc. Infusions every 11 days for 3 consecutive days , that in itself has not been easy by any stretch of the imagination, as my body finds it difficult to tolerate the infusions, the constant travelling , long exhausting days ( having to wake at 3am and not return home until evening …. only to repeat the same process the next day and the next ). It took a while for the treatment to start taking effect ( due to being left without a consistent treatment programme for so long) but when it did start showing positive signs of relief, , my goodness I didn’t stop smiling with twinkling laughter. The struggle of constant IVIG , certainly was worth every second for that latter relief that it gave . I began to live ( to a degree ) , to see the the world so beautiful just as I once remembered it. But very recently things have changed …. the Stem Cell Transplant has been challenged (as I will be the first in the UK to have this treatment for the one in a million disease, Stiff Person Syndrome) . My diagnosis questioned due to the severity of my symptoms, being noted as ” atypical ” ( but how is it possible to clearly ” fit the box” of symptoms or reaction to treatment , when the illness in question is one in a million ???? ) I know many sweet peeps from around the world battling the ghost, and no two of us are the same ….. the spectrum of severity various like any other neurological , autoimmune disease. This leaves one with the question , how on earth can doctors try and stereotype me ? tell me what is ‘normal ‘ and what isnt ‘normal’ of this unpredictable, miss understood disease ?. Nothing quite adds up any-more ….. my IVIG treatment is being removed , and I am now on a horrendous slippery slope of server pain, suffering and loss of dignity. I laid in the hospital bed ( 11/1/16), joints and muscles feeling like they were about to break, tare, snap, rip…… hunched with my knees to chest, begging for help, but no one listened to my stumbling words, trying to explain through my pain …. it seemed as though my file was closed in front of my eyes, as the tears fell pleading for help, begging for the continuation of the IVIG ( of which I was refused, despite visual deterioration with out the effective dose   ….. all I have been granted is half my dose in 4 weeks time, followed by another of the same, then complete discontinuation. I am barley surviving now since my infusion has been cut by half over the previous 3 cycles ….. why am I being left to suffer??? ) . In the darkness my tears continued to fall whilst awaiting for an ambulance to take me home, and yet again left to suffer in silence. Please do not miss understand me, my struggle has not been relentless over the past year, but I fought as treatment every 11 days helped give me strength and dampen my cruel attack from the ghost …. until my Stem Cell Transplant began, which should have been completed in 2015. But now with treatment ( IVIG ) being removed ….. I am drowning in the claws of the demon once more, no matter how hard I fight. And anyone who truly knows me, will tell you I will never give up …. but its impossible to win the battle without sufficient medical help. My silent wishes for the Stem Cell Transplant seem less lightly to come true with each passing day xxx