Cover it in glitter

So life isn't exactly what I had planned... I certainly wouldn't have planned for all this pain and illness. And from the outside and from my point of view this life I have ended up in may look a bit crappy but I think what I am trying to do is represented really well in the saying 'you can't polish a turd, but you can cover it in glitter' 

There is nothing I can do, or indeed the Drs have their hands tied too when it comes to my health. But my efforts to change the world, or at least the lives of some people in it as a psychologist and a social workers maybe far from over. 

As my 1st attempt I started this blog. It's been read by over 10,000 people now! Now to add to it I've started making YouTube videos about various parts of CH and my fight with it. I need to do more of this as I'm becoming increasingly aware of you tubes power and reach. 

Then I decided that I would apply to be a governor of the hospital who provide my care, I was elected and after a year in the role I was recently elected the lead governor... I will write a blog about what this role entails as it has been very rewarding and fascinating 

Now I find myself with lots of 'friends in high places' and I have been doing a lot of work with NHS England. I have spoken at conferences on commissioning in healthcare, and what role the patient should and could play and patient feedback. I have written articles, reports and blogs for various NHS England departments, the CQC and independent groups. 

Closest to my heart at the moment I am running a research project; exploring the psychological and social impact of living with CH and other TACs. Interviewing as many people as I can about what life is like with CH.

I'm still finding my feet but the main aim of what I do now is to make the patient experience a better one, an easier one and a more supported one. 

I chat about all of this fun stuff on my Twitter and Facebook accounts all under the name 'not just a headache' twitter @notjustaheadach

I had to do something positive from what I have been through and continue to go through. It helps me cope with my illnesses and makes me feel like I'm living again not just existing. So you see from the outside my life might look crappy... But I'm covering it in glitter! 

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