Hey my sweet peeps…..I guess you are wondering why I have been so quite recently? So much has been happening….highs as well as lows. However , if I am truthful with you…..I just couldn’t face writing her. Why??? Well let me explain
Have you ever been scared?…..I mean truly frightened? Well that is what happened to me…..fear over took me. A dear friend of mine with Stiff Person Syndrome passed away not long after I last wrote to you……since then, I haven’t been able to face writing again until now. My sweet friend was young, beautiful, strong willed and determined to abolish SPS from her life. She was precious, like a candle in the dark……but now she sleeps in the arms of the angels. I still find it hard to believe she is gone…….I believe that she is the brightest star that shines every night when I look at the deep blue sky…….goodbye precious one xxx
As for me, the inner conflict has been torturous. Last time I wrote to you , my body was having such a hard time coping with the medical treatment I so desperately need …… and I still continue that fight. Every 11 days I go back to the hospital for 3 days of Intravenous Immunoglobulin , which lasts for hours upon end as my body is unable to cope with a higher infusion rate than 36ml per hour…..it almost feels by the time I have had my treatment, spent a few days recovering….I am then on count down to my next hospital visit. However without this treatment regime, my suffering would be far greater, so I am extremely thankful to my Neurologist and my infusion team for taking such good care of me. Every avenue has been, and still is being explored , to make the infusions easier for my body to tolerate. I’m given pre medications, as protocol (Chlorphenamine and Steroids), then six hours later the medications are intravenously given again to assist my tolerance level and try and combat the continual adverse reactions I keep developing. A change of IVIg brand is also being given next week to see if this will also help….this will be my third brand of IVIg that I will have tried, in the hope the side effects will be minimal. My negative reaction to the infusions vary greatly, from Meningitis and Encephalitis, Aseptic Meningitis, low oxygen level, rapid heart rate, fever, low blood pressure, induced spasms, infections……the list is endless. But my darling friends the negatives are worth suffering, to be granted the liberty of a few hours sporadically that I experience post IVIg and recovery. I have actually had the capability to soak up and watch in awe, my tots ride their bikes for the first time….see them play in the park and even had the privilege of making sand castles with them….. absorbing the beauty of the sunset from the mountain…….. and even visiting my very close friend for coffee. None of this has been possible with out server consequence and paying a high price against the ghost….but these few hours are treasured like gold dust, simply magical. I wish I had a magic wand, so my life could be like this always…..but I guess we all wish we had a magic wand at some time in our life’s. So now 98% of my time is still spent in bed…….but as for the other 2%, I am gripping hold of so tightly and never letting go.
One of the most helpful medications that has been reintroduced is oral solution Midazolam, This has been a saving grace during my seizures…..and enables me to have a few hours occasionally with my precious tots. However, timing is everything, and if it is not applied at the appropriate time, then the ghost takes a hold, and the battle of wills go on for hours until one of us caves in ….. but of cause , I always win the fight, I refuse to quit…..I wont let the ghost win…..even after a 4 hour stint on Wednesday. Heck the pain was excruciating, I honestly didn’t think it was going to relent this time…..but after an exhausting fight, Oxygen, Midazolam, monitoring of my SATs…..I finally won. However, I was left with my whole body in tremor…… my speech slow, slurred and stuttering. I cried into my pillow, left with pain from head to toe because of such strong muscular contractions caused by Stiff Person Syndrome……a pain so difficult to describe…..its like being left torn from limb to limb.
So why am I so scared? Well, look at my photo…..who am I ? You see the girl with the sparkly smile…..If you didn’t know me, you wouldn’t even know I had a disease that is killing me from the inside. Now look at the smaller picture…..this is my fight…..this is the ghost. However, I may have Stiff Person Syndrome…..but the ghost doesn’t have me. SPS does not define who I am…..I am still the same person I was before I got sick, and I will fight to hold onto her until I take my last breathe. So what is it that I fear? Despite my determination, I fear losing me. This disease has stolen so much, it is beyond compare to anything I have ever experienced in my life. I look deep into my eyes in the mirror and I see my inner self reflection…..precious, irreplaceable memories. I see the little girl who used to love chasing beautiful butterflies in the long grass that would tickle my legs……..I see the young girl building a snowman with my precious big sister, all wrapped up cosy and warm but with little red noses from the cold……I see me walking along the stage to receive my BSC degree diploma….I see me dancing……I see me on my fist day at work…….I see the first man I ever fell in love with……I see me laughing with my driving instructor the day I past my test, beaming with pride…..I see me laughing and chilling with my friends…….I see the day I walked down the isle , clutching my mums arm so tight……..I see my first dance as a married woman ( The Way You Look Tonight, – Frank Sinatra )……. I see the birth of each of my precious tots, thinking I was the only person in the world that had accomplished something so unbelievably beautiful……I see me smiling with my tots, running , dancing, twirling, swimming, singing, reading bedtime stories and holding them so close I knew I ever wanted to let them go. As I keep looking deep at my own self reflection, the images are so clear, so vivid, I am encapsulated with safety , warmth, love, happiness and success. So much more I can see inside me……and that’s who I am my sweet peeps, and that is who I am fighting for, every second of every minute of every day.
Self reflection is not persecution to ones self……but a driving force to make new, future memories that will be just as perfect as the past…..and that is who I strive to be, that is what I am going to accomplish. Yes, I am one in a million…..I am the snowflake of hope……the girl with the sparkly smile. But most important of all, it is imperative not to lose site of who I truly am……I am just Nerri xxx