'And the world spins madly on...🎶'

Less than a week ago the world lost a truly unique individual. 

In life you walk down a road completely on your own, no one else will follow the same path from start to finish. 

Along the way we find ourselves walking next to someone, someone familiar or someone new. 

Initially it's because of that one thing that you recognise that puts you together, for me and laura it was cluster headaches. For some people you meet this way your journeys are tied together indefinitely as you realise you have so much more that binds you, Laura and I found Dr Who, baking, music, photography and a wicked sense of humour. 

I was talking about peer support recently at work; the need to have people in your life that you can talk to about normal things without having to explain the thing that defines you. In my cluster headache journey Laura was my first example of that soon joined by Chloe and Kim as my Cluster crew! 

laura and I also had lived experience of depression, anxiety and PTSD in common, this ultimately led to Laura's death last week. My own mental health has taken a tumble this week. I remind myself on a loop in my head "it's ok katie, it will be ok, it has to be ok". Laura reminded me this week that that's not always the case. There is every chance one day this will just all be too much for me to handle. 

All I can do I work as hard on my mental health as I do my physical health. Keep talking to my wonderful ever understanding wife, my supportive family and my amazing friends. I need to be honest when my days are bad and never take for granted the people who walk alongside me. But I'm rocked, I'm scared, I'm numb and I'm so angry, not at Laura, at the catastrophic impact of this illness on us all. 

I'll miss you laura, your love, support, humour and honesty. I'll watch our new female Dr and think of you. Love you x 

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?!