Status Quo

So, I've reached another point in my care... I've been here before. We call this point 'status quo'

This is as good as it gets, my current meds are in balance, the side effects not sending me to a&e... I have collapsed due to low heart rate, thanks verapamil. I have seizures that confuse and disorientate me... Thanks lithium. 

My stimulators... Yes now I have two, the ONSI and the external vagal nerve stimulator 'Gammacore' are both working well technically and being as effective as we can currently hope for. 

My nerve block which are 6 monthly are working hard to keep my hemicrania continua and paroxysmal hemicrania in remission. 

So what am I left with. Well nothing has ever had an effect on the frequency of my CH attacks. They have always been 10-15 if not up to 20 in a day for as long as I have been chronic. Which is 10 years soon. 

The pain I experience has lessened significantly but alongside pain I now live with the the side effects of the meds I take and I am far more aware and limited by the cognitive side effects of CH, poor memory, thought processes and speech/ word production. 

But this is my new normal... I can hope and pray that things will move forward, maybe less drugs better stimulator control? But I can't go backwards. 

I always end up here in my head. It doesn't seem to matter what I'm thinking about the thought 'my CH is never going away' this is my life now and it's so so hard, and so different from my old life. But like I said going backwards isn't an option. 

I guess what I'm saying is as much as I find it upsetting, frustrating, infuriating and emotional in so many ways, I'm grateful for the time to stop and think, to work out what normal is now, what my life looks like now and who I am now...

It won't stay this way for long, it never does, something always changes, but along the way it's good to take the time to be grateful that I'm still fighting, to grieve for the old life and to plan for a new one. 

The fight against CH is not a sprint, it's a marathon, and this is just a water stop