Rocky Road…..Fighting Stiff Person Syndrome ♡♡♡


So my precious peeps. … two and three of my infusion is over……well for another nine days anyway.  Gosh how challenging this time has been on my body.  Why?  Let me explain.

I must admit, hell I struggled through the last few days. The spasms were developing so fast, with hardly any respite in between. The increase of strength and frequency was crippling my body… the second day I had three seizures that left my body like a ‘ragdoll’. They were torturous as always, but relentless too….it was almost like I would combat one, then a second was just lurking around the corner waiting for me. It almost appeared like the harder I fought , the harder the ghost fought…..testing the battle of the wills so it seemed. However, as exhausting and excruciatingly painful the spasms were, with all my heart and soul, I conquered each one…..I refuse to quit, bow or relent to the ghost of Stiff Person Syndrome. It can continue to try and break me….but it will not, I wont let it.

With each spasm, Jason was their the whole time….a dab hand at dealing with such situations. Although , I can sense from him, despite his quirky words and fast action response to my seizures…..his heart still pounds with fear, even though he hides it pretty well. As the protocol is etched upon his mind, he administered my seizure medication….rubbing it into my gums, as I am unable to swallow, its the fastest way through the tissue to reach my brain at great speed, in the hope it will release the grasp of the spasm. Alongside my medication, Jason continued to supply oxygen as my SATs dropped, monitoring me with intense anticipation. As the spasm released, allowing me to breath as the contractions in my chest withdrew, a sigh of relief flooded over me. As my body was left in its ‘ragdoll’ state….paralysis overtook, not knowing when I would be able to move again. But the circle continued, as the ‘ragdoll’ state ended, another seizure took its place…..Jason and I were back to square one. This continued throughout my infusion, and if I am truthful with you my sweet peeps….yes I cried….yes I begged inside for it all to stop. I guess I lost my sparkly smile for a short while. But I was exhausted, passing out without even knowing. The IVIg was making me feel so nauseous and the pain in my head continued like an invisible trail into my face, neck and spine. The light was so painful, causing my eyes to stream with burning tear drops.

My hospital team did all they could to help me get through the infusion….I didn’t want to fail at yet another one …..I was holding on tight to the time it may me give me to spend with my precious tots, just being given the opportunity to be some kind of mummy to them, even if the positive effects only last a few days following the completion of the infusion. Its amazing how a mummy’s love can create so much power, strength and determination to fight. To see their precious little faces light up is magical, when I can spend time with them….instead of being kept behind a closed door.

As discussed on day one of my infusion, my beautiful team continued with additional Steroids, Antihistamines and kept the IVIg administration at an extremely low rate, throughout the following days, enabled me to complete the whole infusion.

I wonder how much relief I will feel?….if any. I guess we shall soon see xxx

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