An open letter to the ones I love

I have had so many compliments about my strength in the face of my illnesses recently. People have even gone as far as to say that I am the strongest person they know. These are people I count as family, linked to me by both blood and friendship. You, lovely people, but it surprises me and it humbles me... because is only partly true.

I have a confession, I'm not strong, in fact I am a thief. It's not my strength that you see ... it is the strength that I steal from other people.

Every time you send me a message, pick up the phone to give me a ring, send me a letter, pop in to see me, meet me for a cuppa... anytime you reach out to me in anyway I steal a little more strength, I steal it from you.

So when you look at how many obstacles I face and how many challenges I rise to just imagine how grateful I am for all the strength I steal from the people that love me all year round.

It's not easy to love somebody who is living with long-term illness and constant pain. I am moody,  I snap at you,  I cancel plans and I go off the radar for weeks at a time. I've lost people over the years because it didn't fit with their life.

The fact that there are still enough people around me to supply me with the amount of strength I need is testament to you not me. You stuck with me through thick and thin and have ridden the highs and lows with me. Thank you.

I am forever grateful;  You are my tribe and I love you so much.

a new job?

I loved school, I love learning! I went to university, then I went again, and again and then just for good measure I went again! Through all of that I fought on and off with my health but 5 years ago it all got too much and I had to leave my job. My fight became my full time job.

I hated it. It was such a huge part of my identity. I don't think we realise how much. When you meet someone new we are asked  'what's your name, what do you do?' It's horrible when the answer is 'Hi I'm Katie, I'm sick' it's soul destroying.

What happened next happened by accident. Over the course of 6 months I saw adverts for things that I didn't totally understand. I didn't understand but I knew it was a chance for me to give back and contribute to an NHS that saved me.

I didn't expect what came next. I have worked alongside my specialist NHS trust as a governor latterly putting myself up for and becoming the lead governor. I have also worked alongside various teams within NHS England, promoting the experience of living with long term conditions, self care, patient activation, patient and staff experience.

More recently I have become a member of the coalition for collaborative care promoting and supporting co-production at all levels of the NHS. I have also become a member of the health foundation Q community, a community of people who come together to share experiences and generate ideas around improving healthcare in the UK.

It's given me a purpose, a structure to my life, an identity. When I get asked now what I do I don't think I've ever been prouder to answer.

I don't quite know what this new career of mine is. I continue to be surprised by the opportunities that have come to me in the last year and I'm so excited for what might come next.

My full time job remains fighting cluster headaches and all it's friends but now I can feel like I'm doing more to reinvent, support and enlighten the NHS about what life with a long term condition is like. It's been the most rewarding job I've ever had!

Choosing to support and give back to the NHS that saved me has ironically saved me all over again in a totally new way.

**dont get me wrong, I'd swop this fantastic amazing job for some cures in a healthy heartbeat!**

Coping?

Am I coping? What is coping?

When you look at my life, what you see isn't reality all the time, in fact most of the time. Everyone thinks I'm coping... but what does that even mean.

But why would they think i'm not coping? One of my closest friends asked me today how I was...the answer that came out of my mouth was 'I'm fine', the answer screaming through my head was 'can I have a hug and cry for a little bit'

I don't break down in tears and scream 'it's not bloody fair' all day long which I would like to

I don't pull the duvet over my head and stay there all day, which I would also like to do.

I smile even though I'm dying inside. I laugh when I didn't even hear the joke. I keep going long after I should admit defeat.

Is any of this coping?

It's how I survive, is that coping? I'm scared of boring people with my sadness, seeing yet more friends disappear.

I'm scared if I start getting angry, or crying that it might never stop, I'd never get jack back in the box.

I live a life suppressing all my feelings. It's not a good thing, I need to let the anger, frustration and misery out more often and I need to feel joy & happiness more often... sadly when you suppress your feelings even the good ones stay down too!

Coping is subjective. In answer to the statement I hear so much 'you cope so well' ... yes I do cope, but not all coping strategies are healthy.

‘Self-care’… or whatever we call it

There is a genuine drive in NHS England and within the medical community to promote self-care, self-management … whatever you want to call it. The language we use around it is almost as big of a debate as how we encourage and support self-care! I’m personally not overly offended by anything we call it a long as the message’s that come with it are positive and respectful.

Firstly, let’s get this straight, self-care is not a new idea, it’s not something we need to introduce. Anyone living with a long term condition knows that you self-care every day of the year. We actually do the vast majority of the work under the direction of the medical professionals.

I’ve sat in endless meetings recently and listened to everyone’s ideas about self-care and I’ve found it really challenging to relate it to my life with chronic cluster headaches.

To my mind, the idea is that we look at what we are already doing as patients …

Taking medication each day, treating each and every individual attack, coping with the devastation it leaves in its wake and then carrying on and doing it all again tomorrow.

And look at what the NHS could do to help us make this easier, more effective and increase our confidence in managing our conditions, for example …

Training and education, technology e.g. Apps and telemedicine, more control

So I’m throwing it open… what help do YOU think the NHS could give us that could help us manage this condition, contact me by commenting on this post, emailing me (notjustaheadache@gmail.com) or sending me a message on twitter (@notjustaheadach)

why should I care?

How many employees of the hospital do I have contact with when I have an appointment?  Maybe it starts weeks before with someone on the phone trying to book a time that suits my crazy schedule. Then the receptionist when I book in, a nurse who sends me for an ECG, the person who does the ECG, the phlebotomist who takes my blood, the consultant who talks me through my options... And many more, the list is unbelievably long

Who do I remember? The one with the information is usually front of my mind, the things I need to know or do once I leave. However, they are not the only one…

Who makes a difference to your visit? to me it's not all about the medical treatment I receive, it's about my whole experience, how I was treated, how people spoke to me, the way questions were asked, the respect given to my answers. 

Isn't a huge part of our patient experience about the staff and how they interact with us? I bet you can think of good and bad experiences with staff that have effected your overall experience? 

I was in A&E late one night and not long after we arrived a nurse spoke to my wife rudely and abruptly when discussing my treatment plan, not taking time to explain things clearly. It was obvious that she was doing 100 jobs at once and that she was stressed out so in my semi awake state I just carried on and ignored her. However, for my wife, who was in a heightened state of stress herself, this one interaction tainted was to be a 3 day stay in hospital.

Then there was the nurse who noticed that i was wide awake in the middle of the night after a life changing diagnosis was given to me just hours before. I had no wifi, no way if finding out what this diagnosis really meant and without me saying anything, she went online and printed out information about the condition for me and say and talked it through with me after giving me time to read it. Ill never forget her, that night was just a bank holiday weekend shift to her but to me my life changed and she was very much a part of it. 

 That nurses bad night, or maybe even just a bad moment in time became our bad 3 days

I always think of the staff working out of sight, the people analysing our blood, trying to get us a bed.  

The individuals who do these jobs save lives too, but with none of the credit. My dad’s 1^st job was analysing people’s blood, he recalls clearly a night when he was due to go to a football match (his true passion) when a blood sample of a new born baby came into the lab and needed analysing to determine their treatment… of course he stayed and of course he did it, because he cared about that patient. I’m sure no one said thank you but I’m sure the family were grateful. In case you are worried (which im sure you are!) he made his match and his beloved Chelsea won 2-0 !

‘But It’s their job’… true it is, but they work long hours and often antisocial hours.

‘They get paid for it’… true but it’s also often a vocation, to my mind the pay doesn’t represent the roles these individuals have.  

So why do I care? Why does it matter to me? It matters to me if the staff experience in the NHS is poor, their experience has a knock on effect on the quality, compassion and safety of my care.  These days and nights we spend in their care might be their ‘3^rd night shift this week’, or their son’s birthday that they couldn’t take off… for me it’s one of those nights I could have died, or the day I watch my relative pass away or we find out that our parent has cancer, maybe if we are lucky the day our child was born.

It matters to me that the staff experience of working in the NHS leads to them really sharing in these life changing moments for what they are, enhancing our experience and not negatively impacting it.

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.