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!**