The twist of fate entered my life again today, influences my journey of fighting the ghost. The most precious gentleman……a complete stranger. ….gave me hope, encouragement and compassion.
Unfortunately, I didn’t have the best of starts to the beginning of my day. Its day one of round eight of my intravenous Immunoglobulin infusions. So, three 12 hour infusions begin again this week. I was rather elated that my infusions are now thankfully continuing every two weeks, I was excited about starting my next course today. However, my battle with Stiff Person Syndrome, put up a very strong fight today. As Jason was picking me up from the inside of our car , to place me comfortably in my power chair, my legs were already like metal bars, the stiffness triggered by the car journey. My back arched inwards with my shoulder blades solid as ice. Gosh the pain…..when will it stop?
Jason helped settle the rigidity of my body, slightly easing the pain, and geared me into the hospital. I greeted my usual, beautiful team….I guess they have become more like family to me now. Its always lovely to see their sweet smiles and listen to their kind words. Unfortunately, my body went into an unexpected spasm, before I even began my IVIg….yet another , Jason nursed me through. My seizure medication was administered, and I could hear his gentle voice whispering to me “its going to be okay, I promise you”. Of course he was right, I was fighting inside with all I had, and gave a smile as the ghost released its claws. However, I remained “locked” at my hips knees and left arm…..Jason spent the day repositioning me, toileting me….despite his light hearted gestures, his eyes showed his sadness and pain, almost pleading silently for the wife I once was.
A sweet member of my team put a cannula in place, some blood tests were taken and pre medication administered , before the IVIg began. This regime I know off by heart know as I have worked with my team for quite some time now. However, what I can not predict……is how my body will react to the next course of IVIg ?…..today was a bad day. I started developing regular side effects, like sickness and a dull headache. Nothing to moan about, but as time was going by, I was becoming more unwell. My eyes were burning, extremely light sensitive, running a slight fever and so fatigued. But then fate lent a hand, as I raised my head, I caught a glimpse of a gentleman, who reminded me so much of my granddad, whilst reading his paper…..I silently smiled to myself. So this was the beautiful stranger I met today 🙂 …..despite his own illness, he came and sat with me for a few hours, talked to me in the way my granddad always does, He even bought my grampys favourite sweets, unknowingly, from the hospital goody trolley…..it made him laugh when I told him…..he even gave me the ones that I find so yummy, just like my grampy always does. I miss my granddad so much, I wish he would get better soon, my bedroom feels empty without him cuddled on the end of my bed. All my grampys words of wisdom, were reinforced by this sweet gentleman who sat before me today. Despite holding tight to my sick bowl….this special man still made me smile and laugh….I think we both learnt a lot about each others, fight, loss, determination. I feel very privileged to have met such an amazing kind soul.
Sadly, my reaction to the IVIg was not pleasant. I struggled through the whole infusion, but with a sparkly smile of course. If this infusion makes me strong enough to have one more day at the beach, having a picnic or feeding the ducks at the lake with my tots, then anything is worth going through.
Notes were being recorded of my strengthening, negative reaction, almost similar to meningitis….then yet another spasm griped me….but this time it was strong and I could feel the torture inside me. Jason applied my seizure medication once more, and was joined by a fantastic doctor and extraordinary nurse on my team. They all worked together, monitoring my SATs, supplying oxygen when my chest muscles contracted so tight, affecting the natural ability to inhale and exhale….and finally in retaliation, the ghost fought harder, but so did I, until it would relent. Many notes were taken, and a change of plan has been tweaked for tomorrows infusion. So despite feeling I have been hit by an imaginary truck, I am very confident about day two of my infusion. Suggestions were evaluated and decisions made, to try and make the infusion easier on my body. So the IVIg is going to be run at almost half the rate I am receiving at the moment, and top ups on pre medication of Steroids and Antihistamines throughout my infusion. I am so pleased I have such a wonderful hospital team supporting me, and doing everything they can to help me have a little relief from a few of my symptoms of Stiff Person Syndrome.
I have to try and get some rest now, although if I am truthful, at this moment, I am crying through the pain. I have a 4am wake up call, due to the IVIg being administered at an even slower rate tomorrow, its going to take almost double the time to enter my body. So I have my heart crossed for an easier time as the sun rises soon.
Sweet dreams my precious peeps xxx