Sinking alone In a boat?

Self care... A word that hopefully you will hear a lot about soon but what is and why are we talking about it now?

Self care is not a new thing. Those of us living with any long term condition do not live in the hospital, even if it feels like it sometimes!

We all look after ourselves 24 hours a day with maybe 1/2 dozen medical appointments a year or even a month, the majority of the time is us alone with the day to day management of our illness and its treatments.

Being diagnosed with a long term condition is like being dumped in the middle of the ocean and being told to swim.

How well we cope, adapt, manage all that comes with this diagnosis determines what sort of boat we are in... For some a leaky old canoe, for others the QE2 luxury cruise ship.

I've had all sorts of boats in the last 20 years, in fact some days I go to bed in the cruise ship and wake up in the canoe!

The big issue is powering our boats... Sadly that's not down to us, that's determined by the medical team that surrounds us. A good supportive team or individual can offer us a super powerful engine or an ineffective temperamental one or even one a pair of dodgy paddles! No matter how good at self care you are you will go nowhere without the support and guidance of a medical team.   Have you ever tried to power a cruise ship with a pair of dodgy paddles...

It's all about balance, us not overdoing it and making our conditions worse by managing our health all alone and the medics being aware, respectful and supportive of our role in the day to day management of the condition.

Ultimately most of us will never reach the shore, this ocean of long term conditions is our home... This isn't the journey we expected, but with the right boat and enough power in the engine to explore who knows what adventures we might have?!

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

The social media illusion.

 

The image people see of me on the Internet is not the full story of me; my personal social media accounts, Facebook, Twitter, Instagram are my way of communicating with friends all over the UK, as well as some of my closest friends who are 1000's miles away. I want them to know that I’m having a good time and that I’m achieving things despite my illness. But when times get hard it can be one of my ways of reaching out for a virtual hug.

But what you see is all an illusion; social media is (in my humble opinion)all an illusion. For me as a young (ish) person living with 9 long term illnesses it's even more important to look like I am still living a life worth living. I'm not changing who I am or what my life looks like by what I say on my social media accounts I just cherry pick the best bits to share!!!

I only post pictures I like of me: it's not rocket science is it!? Who would post pictures of themselves that they are not happy in?

Makeup makes me look half human on days in reality with cluster headaches this is what  I look like - death warmed up!

'You look so well'

Yes,  I went to a wedding at the weekend, yes,  I looked well (did I mention how amazing my makeup bag is?!) and yes I'm smiling. That’s what you saw from the pictures and posts I did over the weekend.

 I forgot to post the picture of my sitting on the floor of the disabled toilets in my new pretty dress crying for an hour, using my oxygen hugging the cylinder like it’s the only person in the world who understands me.  I didn’t write a post about the searing agony in my head, or that my friends I’ve known for years don’t understand my life or my  illness and how upsetting it is to answer the ‘so what do you do?’ question, again and again, with no answer!

You look so well is a really hard one; I want people to think I look good of course I do! But I constantly interpret that as ‘I thought you were too sick to work… you don’t look sick’

Of course I don't want my exterior to represent what's going on inside my body: But sometimes I think maybe people would understand me a little better.

So yes we are lucky to see friends, but we pay for the privilege, physically and financially.

My fatigue levels are like nothing I've ever known. For every 'good day' that you see on social media, I am then in bed for at least the equivalent amount of time. We just had a short 4 day break away and I spent a week in bed afterwards (worth it though)

I've learnt to be proactive and productive on these recuperation days. My bed transforms into an office like the Tracey island toys of my youth! So you may see me respond to emails or tweet or post on facebook.  I often spend these days fiddling with Instagram filters making pictures of my days in the real world look even more fun and beautiful that they were... All of this online activity and you wouldn’t know  that these are some of my worst days!

It's hard to convey how you feel in 120 characters or a Facebook status. It's even harder in a single photo. Not just for me, for everyone.

I want people to see that I'm still functioning (just about!) that I still make time for my friends and family and that I care about their achievements, birthdays, babies and our friendships.

I don't want to waste my energy and their Social media feeds talking about this depressing illness. I try to mention it only when something good has happened and we have achieved something.

My friends might point out something different now; but I hope I present the positive side of Katie on my social media. This is my goal; I need somewhere where my life is normal... Ok not normal that's a bit too much to ask, but more like the rest of the world.

But the message of this blog is that it is all an illusion. Like a swan I may look like I'm swimming through life, having fun and seeing friends but underneath I'm kicking like hell in the biggest fight(s) of my life to stay alive. I don't want to talk about it, I want to carry on talking about the good side of things but don't forget it's not all there is... So please don't judge me.