The Life of Riley

Christmas is a time for celebration. It’s also a time for reflection, and as the New Year approaches, we often find ourselves thinking about our past and future lives – the people who have influenced us, the experiences that have shaped us, the things we want to do, and the people we want to be.

The expression ‘living the life of Riley’ suggests a perfect and contented life, without conflict, worries and hard work. There are various theories as to the origin of the expression. Many believe that it stems from the American poet James Whitcomb Riley, who wrote sentimental poems about young men who spent their summers lazing around without a care in the world.

“From cradles and sleepless nights, you breathe in life forever. Although this world is a crazy ride, you just take your seat and hold on tight.”

Ironically, I’ve been told on several occasions that I myself am ‘living the life of Riley’. In the words of one individual – everything that I want is served to me on a plate – from exam results and academic progress, to personal possessions and lifestyle.

“What we see in others is a reflection of what we see in ourselves.”

I am more than what you see

If there is one thing that I’ve learned in life so far, it’s that you achieve nothing without sheer grit and determination. Half of the battle lies in finding the energy and resilience to do so, because we are all living and breathing our own challenges.

“Believe only half of what you see and nothing that you hear.”

In the world in which we live, everyone sees what you appear to be. Very few experience what and who you really are. I’ve had the pleasure to meet and get to know some wonderful people over the years. Unknowingly, each person has enriched my life. From sharing their experiences, to walking alongside me on our shared journeys, I valued, and continue to value, their influence on my life.

“Never be fooled by what you see on the outside, because on the inside, it’s often a different story.”

As I write my final blog of 2016, I begin to recall the highs and lows of the year. This time last year, I was sat in the very same place, spending every hour of every day meticulously learning material for the first set of exams for the final year of my Bachelor’s degree. The thing is, people only see what they think you do – that is, turn up for a few lectures, and walk out in a cap and gown four years later. The endless hours sat up writing, deprived of sleep, drained of energy and longing for a break may only be seen by your closest friends and family. Moreover, the constant anxiety is rarely seen by anyone but yourself. I can honestly say that my time at The University of Manchester was one the most stressful few years so far, albeit filled with many happy memories. After 27 exams, two literature reviews, four laboratory modules, a twelve-month placement, one research project and a whole host of essays, reports and presentations, I managed to get a 1st class honours degree. But trust me, I really had to work for it, as did each of my friends. Along the way, I made some lifelong friendships, and together, we helped each other through it – because there certainly were days when we wanted to give up!

Why should I wait

“If we wait until we’re ready, we’ll be waiting for the rest of our lives.”

I’ve lost count of how many meetings, seminars and conferences that I have attended over the last year, in my role as an advocate for young people living with arthritis and similar conditions. I’m often asked how many hours per week I spend on doing what I do, and whether it is impacting on my health and since October, my PhD. Here lies the difficulty, as it is different each week! It may be one or two hours, or a week-long commitment. Since starting my PhD, I’ve carefully planned my time to ensure that I am meeting all of my project goals, before I ‘work’ on the wide variety of advocacy tasks which I am aligned to. I place work in inverted commas, because it really doesn’t feel like work. People often ask why I advocate on behalf of others. Why do I place all of this added work on top of my already busy life? Ultimately, it’s because I care. It’s because I genuinely want to make a positive impact to the lives of others.

“The only way to do great work is to love what you do. For when you do so, you’ll never work a day in your life.”

Whilst advocating for young people with arthritis, I’ve had the opportunity to visit many wonderful places – both in the UK and overseas. I am also privileged to meet many wonderful people – including young people living with health conditions, parents and carers, health professionals, researchers and charity workers. Whilst it might seem that I’m always off on my jollies (largely because I’m always taking photographs), in reality, there is a lot of preparation that goes into the meetings that take place, both individually, and as part of a larger team. When given the opportunity to travel, I snatch it with both hands. In the words of Hans Christian Andersen, “To travel is to live”. I usually add a few days onto the end of meetings whilst away, to explore places and embrace cultures – for adventures are the best way to learn. In 2016, I’ve certainly ticked a few more places off my bucket list. In April, I went to Sofia, Bulgaria, for the EULAR Annual European Conference of PARE. In June, I spent a beautiful week in sunny Barcelona, Spain, as part of the iCAN Research and Advocacy Summit. Finally in September, I brought my summer to a close by jetting off to Lisbon, Portugal, to present at the 8th European Paediatric Formulations Initiative Conference. I also explored the Mediterannean on my first cruise – visiting Genoa, Florence, Pisa, Naples, Pompeii and Venice in Italy, as well as Dubrovnik, Croatia. What an experience it was, and I became addicted to cruising. I can’t wait for the second one in April 2017, when I’ll be off to the Norwegian Fjords!

“Fill your life with adventures, not things. Have stories to tell, not stuff to show.”

My invisible journey

Whilst studying and working and traveling, I appear to be a picture of health – fighting fit, always smiling, no obstacles in my way. In true British style, if you ask how I am, the reply will always be, “I’m fine”. If I was to rhyme off everything that was wrong, and how rubbish I was feeling, we’d be there for quite some time! I believe that there is always someone worse off than me, but that doesn’t mean that my pain doesn’t count. Every day, I fight pain and fatigue. At times, the severity is so bad that words fail to describe how I feel.

Just some of the medications that I use to ‘keep me going’.

I use a concoction of medications and remedies to help keep me somewhat functional, although there are days when it’s all simply too much. By speaking with other people who live with arthritis, fibromyalgia and inflammatory bowel disease, it has helped me to know that I’m not alone. Before I had access to such groups, I often felt isolated, and sometimes wondered whether it was all in my head. Of course, I speak to my family and friends about how I am feeling, but you don’t want to keep moaning or complaining! However, without fail, when I walk out of the door each morning, I smile, remind myself that things could be worse, and feel thankful for what I do have.

“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

As we enter a New Year, I ask that you please remind yourself that everything is not as it may seem. Each of us is fighting our own battles, and the world is already filled with much darkness and sorrow. Be the person that makes others feel special. People will forget what you said. They’ll forget what you did. But they will never forget how you made them feel.



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