Disconnected mentally, physically and....... not emotionally.

Fuck, Fuck, Fuck, Fuck, FUUUUCK.........
Awake at 3 am .......... standing looking up at the stars and asking for guidance.

“DAD”, what would you do ????
“MUM”, What would you say to them.

I actually almost hear their answers and debate.
Well dad, it’s like this.... the type of demyelination I have is genetic. It’s in our genes and I’m hoping like hell my kids and grandchildren are not effected or technology will save them.

Mums answer was “ what a load of shit. What would they bloody know? Go into denial...”

Dad Just goes along with it all but I can tell he’s thinking....

My visit to the Neurologist today was a bit surreal.  It was a whack of doctors gently actually telling me. Not sending me off and still having questions. Ultimately, this is what we’ve been waiting for, all the tests and barraged appointments came together in this two hour visit. I’m actually numb.
I’m actually starting to have spacticity seizure. Be right baaaack....


I’m back. Off the above writing for a minute.
It just goes to show how a picture tells a thousand stories. My writing is splashed out in a state of spacticity mostly. I look like steady Eddie with cerebral palsy. I have to take breaks and come back and forth when my body allows. It’s the parts people don’t see when reading my piece or peace.

Ok, so back to my Neurological visit and other things that have happened over two days. In a nut shell, so many doors left open have shut. Very good really. This thing that drives you through all the appointments with medical professionals, finance advisors, lawyers and community helpers has taken top gear and I look around for what else needs my attention.   Ha ha, me. I need some of my own attention.
So here’s another part you don’t and can’t see. I’m laying this piece to rest until I feel driven again. I’m closing this page and I’ll re open and finish my writing when my brain wakes again. The spacticity meds have dulled me. ................

Remember too, this is my story as I know and see things. It is not always fact but I do my best at with  what I hold.


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