It feels only like yesterday since I was reflecting on 2016, yet here I am, at the end of 2017, after what feels like a whirlwind of a year. I fondly remember from my younger years when teachers and family members would joke about how time goes by much faster as you age… and boy is that true! In the run up to 2018, I’ve spent some time reflecting on all the things that I am thankful for, and the many opportunities and experiences that lie ahead in the New Year.

Self-reflection is a humbling process. It’s essential to find out why you think, say, and do certain things… then better yourself.”

The power of three

The power of three is a concept that so many of us overlook. Yet, the concept, often referred to as a ‘the rule of three’, encompasses various aspects of our lives, and the decisions that we make on a daily basis. Take the three C’s of life: Choices, chances, and changes. You must make a choice to take a chance, or your life will never change. Plato’s tripartite theory of the soul also reminds us that human behaviour flows from three sources: desire, emotion, and knowledge. Then there’s the rule of three in computer programming, mathematics, statistics, writing, chemistry, economics, aviation, and indeed, survival. Us humans tend to remember three things, and work best when thinking with a ‘three mindset’. I’ve started to use this technique in my speeches, as the power of three concepts, phrases, experiences or images can really turn something from ordinary to emotive. One of my favourite examples comes from former Prime Minister, Sir Winston Churchill:

This is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning”.

In 2017, the power of three wonderful ‘things’ has guided all that I do, and it is these three aspects of my life that inspire me, empower me, and enable me to get up each day, and embrace all that the world has to offer.

Loved ones

No matter how busy a person is, if they really care, they will always find time for you.”

Everyone seems to be running around here, there and everywhere in today’s world. Yet, despite supposedly living in a constantly connected world, it can often feel as though we’re more distant than ever before from those we care about. Nobody loves their work more than I do, and I certainly put my heart and soul into everything that I do, but nothing, and I repeat nothing, ever comes before family and friends. I may have lost an hour of work when I went for coffee with a friend, but in the grand scheme of things, we must prioritise what, and more importantly, who, is important to us. If you have experience of ill health, then you’ll know only too well the importance of being supported by your nearest and dearest. My family certainly has more than its fair share of misfortune when it comes to health, and 2017 has been no exception. Back in May of this year, my mum ended up with pneumonia, and it took a fair amount of effort for her to get the treatment that she so desperately needed. This followed an eventful coach journey home from Southampton after our cruise to Norway, which ended up with mum being taken by ambulance to Wythenshawe Hospital in South Manchester after a hypoglycaemic attack. While it would be easy to focus on all of the negatives that we’ve experienced, mum always looks on the bright side of things, and it’s certainly down to her that I have such an optimistic outlook on life.

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Respect people who find time for you in their busy schedule. But love people who never look at their schedule when you need them.”

As with each year that passes us by, we also find ourselves saying goodbye to people who have touched our lives in one way or another. Sadly, 2017 has been no exception. While not exhaustive, there are certain people I have to mention. Firstly, I, and so many of my EULAR friends, were completely devastated earlier this year when our dear friend, Dora Papastavrou, suddenly passed away. Dora was a real breath of fresh air, and brought joy to everyone she met. Her smile was infectious, and her passion for helping others was incredible. We remain determined, however, to keep fighting for improvements in the way children with arthritis are cared for, guided by Dora’s principles, and in 2018, at the EULAR Annual European Conference of PARE, we will recognise for the first time, examples of work from across Europe focused in young people with arthritis and related conditions, with a new youth award, which will be dedicated in memory of Dora in 2018.

In 2017, two dear friends I had met through HCPT also passed away: Brian Harrison and Maura Cronshaw. I have so many wonderful memories of Brian and Maura, who were two beautiful souls who went above and beyond what is ever expected, to make a difference to the lives of others. I first met Brian in 2003, when at the age of 10, I was nominated to travel to Lourdes in France with HCPT. Brian was the first person I met from HCPT Group 81, and really did make an incredible difference to my life. I will be eternally grateful to him for all that he did for me, and he really did inspire me to return as a helper with HCPT as soon as I was old enough. Thankfully, that happened 7 years later, when I travelled to Lourdes with HCPT Group 216, which is where I met the lovely Maura, our Group Nurse. I have many happy memories of Maura from our trips to Lourdes, remembering her great sense of humour, and caring ways for everyone she met.

As we approach the New Year, I also remember a number of other friends, family friends, neighbours, and acquaintances who passed away in 2017: Margaret Chadwick, Brenda Taylor, Jack Peacock, Joan Egglishaw, Norah Heneghan, Edith Hargreaves, and Lilian Morris. May they rest in eternal peace.

Life is short. Time is fast. No replay. No rewind. So enjoy every moment as it comes.”

Discovering the world

I thought that I had accrued some serious air miles in 2016, but 2017 has been something else! There hasn’t been a month that has passed this year when I’ve not been in a different part of the UK, or indeed in a different country or continent! Travel is certainly exhausting, but it’s so, so worth it. Not only have I had the opportunity to travel to nine different countries (as well as up and down the UK), but I’ve had the privilege of meeting and catching up with many wonderful people.

Travel makes one modest. You see what a tiny place you occupy in this world.”

You all know how much I love my photography, so here’s a few pictures from my travels, featuring: Cascais (Portugal), Madrid (Spain), Vienna (Austria), Athens (Greece), Amsterdam (The Netherlands), Brussels (Belgium), Stavanger, Flaam, Olden and Bergen (Norway), Dublin and Sligo (Ireland), and Orlando, Florida (United States of America). There’s also a few from the UK peppered among the exotic locations too!

I am so excited for all of the places that I’ll be off to in 2018 too. From Brussels to Paris, to The Netherlands, and Romania, there’s so much to look forward to. I also can’t wait for my third cruise (I told you I was addicted)! This time, to Malta and the Greek isles. I may also be venturing further afield towards the end of the year, but my lips are sealed at the moment!

Twenty years from now, you will be more disappointed by the things you didn’t do, than by the ones you did do. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover.”

My vocation

Last, but certainly not least, is what I can only describe as my vocation. Not the PhD that I’m doing, because I thrive on being sleep deprived and thinking about research 24 hours a day. Not the advocacy activities that I do ‘on the side‘ because I can’t say no to getting involved in projects, conferences and initiatives left, right and centre. But, my vocation.

Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work. And the only way to do great work is to love what you do.”

Everything I do with my ‘work’ hat on, whether that be the work that I’m doing for my PhD, or all of the other things that I’m involved with, is all part and parcel of what motivates and drives me each day – and it is the knowledge that all of this work is actively helping to make a practical difference to the lives of young people, adults and families living with chronic diseases – today and tomorrow.

Many people often ask how I manage to fit it all in, and sometimes I do wonder that myself – especially alongside my own health conditions, all of the travel that I do, and having a social life (I’ve caught onto the G&T trend in 2017 too!) However, I can honestly say that my life really is fulfilling – and I’m loving every minute of the work that I’m doing, and the career that I’m building for myself. In 2017, I successfully passed my doctoral viva voce examination, which enabled me to progress from a provisional PhD student to a PhD candidate. Now as a second year PhD student, I’m looking forward to commencing the most exciting part of my research project, which involves working with young people, their families, health professionals and teachers, to pave the way for how young people self-manage their arthritis in the future, and how those supporting them share that management.

I could rattle on about all of the courses, conferences and meetings that I’ve been to, but I’m afraid we’d be here all day and night! So here’s some quick statistics of some of the things I’ve been up to in 2017:

  • I’ve attended 21 external courses;
  • I’ve worked on 13 research projects;
  • I’ve joined 8 new research networks;
  • I’ve co-hosted two tweet chats;
  • I’ve led one online course;
  • I’ve facilitated 6 workshops;
  • I’ve participated in 21 conferences;
  • I’ve published 25 pieces of research;
  • I’ve delivered 18 oral presentations;
  • I’ve published 8 pieces of digital media;
  • I’ve authored 13 blogs on external websites;
  • I’ve been mentioned in at least 25 press releases and online articles by other organisations and individuals.

I was also honoured to be announced the Winner of the WEGO Health Award in the Healthcare Collaborator: Patient category during the autumn of 2017, and to be nominated for a 2018 UK Blog Award.

Simon Stones

I started blogging for Arthur’s Place in 2017, and have continued to grow my website as you can see. I’ve been honoured to be a judge for the panel responsible for selecting the UK essay that will be shortlisted for the Edgar Stene Prize 2017 and 2018. This is a really important role for me, after winning the overall Edgar Stene Prize in 2016. I’ve been involved in reviewing several research grants for Arthritis Research UK – a rewarding exercise to be a small part of research that could potentially transform the lives of people living with arthritis in the future.

I was also thrilled to be asked by my dear friend, Sophie Ainsworth, to become a Trustee of her soon to be registered charity, RAiISE, and I was delighted to become part of history when I joined the Savvy Cooperative as a Savvy Pioneer – becoming the 6th member of this patient-led co-operative movement led by my friend, Jen Horonjeff in the USA. I also built on my work with the European League Against Rheumatism (EULAR), when I applied and was approved to join the Emerging EULAR Network (EMEUNET) of young rheumatologists and researchers. Rightly so, I decided to apply to work on the social media subgroup of EMEUNET – as you all know how much of a Twitter addict I am!

2017 has also seen me become a member of the BSPAR Parent GroupEULAR Study Group for Collaborative Research, the Hyvr Advisory Panel, the Translate: Realising Medical Technologies Innovation in the Leeds City Region Advisory Board, the European Young Person’s Advisory Group Network (eYPAGnet) the International Children’s Advisory Network (iCAN) Partner Engagement Communications Working Group, the iCAN Conference Committee, and the iCAN External Advisory Board. I also became a Research Adviser for the Canadian-based Carion Fenn Foundation, and an advisor to the newly-formed National Institute for Health Research (NIHR) Manchester Clinical Research Facility Young Person’s Advisory Group. After a fabulous course in Edinburgh, I also became an Associate PhD Student of the University of Edinburgh, Centre for Research on Families and Relationships. These roles are in addition to the many other roles I continue to hold, including as a Trustee of Fibromyalgia Action UK, member of the EULAR Young PAREWorking Group, and member of the Paediatric Rheumatology Clinical Studies Group(among many other positions too!)

All of these wonderful opportunities are of course enriched by so many wonderful friends along the way, and here are just a few of those people whom I’ve had the pleasure to see in 2017!

I also have some more exciting news to announce in 2018, but again, my lips are sealed at the moment, and I can’t wait to share more news about future developments and opportunities that lie ahead in 2018.

Energy and persistence conquer all things.”

The beginning of anything you want

As we enter a New Year, remind yourself of what’s important in your life. Life is too short to wake up in the morning with regrets. So, love fiercely the people who treat you right, and forget about the ones who don’t. Believe that everything happens for a reason, and if you get a chance – take it. If it changes your life – let it. Nobody said it would be easy, they just promised it would be worth it.

Learn from yesterday, live for today, hope for tomorrow.”

Wishing you a healthy, healthy and prosperous 2018!

Simon - New Year 2018 Email

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Written by simonrstones

Simon Stones, BSc (Hons), AMRSB, is a Biomedical Sciences graduate and a doctoral researcher in child and family health. He is a passionate activist and ambassador for young people living with invisible illnesses, inspired and empowered by his own journey with arthritis, fibromyalgia, and inflammatory bowel disease.

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