Im sure this is a statement many a FND'er can relate to, heck, Im sure its something a lot of people would say and feel whilst they live with a chronic and debilitating condition.
So yes, in the eyes of the medical profession, I should be getting better.
However they acknowledge and are watching me get worse.
My GP is quite alarmed by the decline in me from our last appointment Mid April, just before I was given the news from the Neurophysio that I had FND.
She saw the tremors and shakes I have and the weird shuddering sensation I get which makes me shake my head and trunk of body and let out a aaahhhhh sound (LOL why cant I give out a better noise than that, this just encourages giggles!)
Its like lightning flashes through my body from head to tip toe in an instant and BOOM electric blast along my nerve pathways and then a shudder which is the only visible sign of how it feels.
She's told me she will out a note on my file, if I call I'm to tell the receptionist I'm in trouble and she will either fit me in or get the Dr to call me.
That was a huge relief and meant a lot.
She has also started me on pregabalin, 75mg bedtime for 4 days and then add in a morning dose.
So far so good I feel. It will be up to 8 weeks before I feel a difference.
As a side effect or pure coincidence, I had a spell on Sunday where I was twitching and kicking out, arms flailing about and head jerks for about 3 hours over night. I was exhausted when I woke up and felt I'd run a marathon, on my hands and knees!
Tuesday I had the worst episode yet. Husband was out, my son was home with his gf and they were going out to the park whilst I made a chili.
I said I'll text when halfway thru and you come home and drain the rice and dish up.
I can manage to stir the pans sitting down.
They left and I went into the kitchen and stopped and stared.
The pack of raw mince was like looking at a rubix cub and trying to work out the method of matching all the coloured squares up. Impossible!
Sure enough I had forgotten how to prepare and cook this meal.
I became frightened of losing a memory, of losing something so important ,yet such an everyday action.
I just looked at the mince and could not work out how to make it into a chili.
I began to panic. Anxiety grabbed my throat and made my heart beat faster.
My head was pumping and pounding and next doors child was screaming and kicking a ball against our fence causing me to jump and panic further.
I started sobbing, big grief stricken sobs from the bottom of your belly.
I slumped on the floor holding my head to try and stop the flashing images of mince, pans and veg as my brain tried to connect the things together.
My dog began scratching at the stair gate and howling. He snapped me out of my bubble and I went and sat with him on the patio doorway.
He came and sat as close as he possibly could and out his head up on my shoulder.
I text my son to come home asap and he text me all the way home saying he was nearly there.
He ran in and gave me the biggest hug. Like we switched roles and he was my parent comforting his daughter. I felt so protected and safe now he was home.
We also found I had left a pan on and has subsequently burnt a pan of rice into some type of charcoal mess!! I had no idea it was on or even burning.
When husband came home later that night and I told him what had happened he has banned me from using the oven if no one is home.
I feel so useless and dumb. How can you forget how to cook? It was like a light switch went off.
I'm hoping this is meds related.
I'm also being so forgetful in everyday things.
The brain fog and muddling words is back again.
Aren't you meant to come out of a flare up, in order to have another?
I feel one flare is merging into the next.
I dont feel I'm improving. Quite the opposite. X
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