Don't read this post if you don't want to see someone having a pity party. It's okay, I'll get over it like I always do. It's the sheer frustration of this condition and not knowing when it will sneak up on you with a flare up, no matter how careful you are in looking after yourself. And as I don't have anyone to share my news with, I figured why not at least tell people who know what it is I'm going through.
What a change from last weekend when I was climbing cliff tops taking photos of the Humpback whales on their northerly migration on the east coast of Australia with all my camera gear. This episode started on Friday afternoon at work, very suddenly out of the blue I felt "odd". A severe feeling of dizziness and profound fatigue hit me like a wave, I started dropping things and the pain in my back, legs and face started along with mild tremoring. By friday night I had areas of numbness, pins and needles in my hands and feet and joy-oh-joy a new sensation of my fingertips on my right hand like they had been scalded with boiling water and somone was applying electric shocks to them.
It's 4am on Monday morning now. I was woken up with terrible pain in my face - and someone has put sharp rocks behind both of my eyes - along with the return of bright swirls and circles of white/blue flashes of light everytime I blink. The photophobia is so bad I can't turn on the bathroom light without experiencing daggers going through my eyes. I'm guessing it's the return of the optic neuropathy. In wanting a cup of tea to have with some pain control, I discovered how bad the tremors are at the moment (I knew my legs were really shaky, but didn't think my hands were quite as bad). I think there is more sugar on the kitchen counter than ended up in the cup. My doc told me to video my obvious symptoms, as usually by the time I get an appointment they are mild or gone. So for what it's worth here is what it looks like - hands and head tremors (forgive the scruffy 4am - feeling like doo-doo appearance).
The wonderful world of CNS Sjogrens - a gift that keeps on giving.