Friday, 28 September 2018

Making Arthritis My Job

Living with arthritis

I feel as if arthritis has played a part in my life from an early age. I was diagnosed with Acute Rheumatic Fever soon after my 7th birthday. I remember coming back from summer holidays, where I spent the majority of my time by the seaside; swimming, playing on the beach, building sand castles and getting sun burnt. Par my return home, I had streptococcal pharyngitis and couldn't get out of bed for the rest of the holidays. This was followed by various red spots and bruises appearing around my knees, ankles and foot, which were tender and painful to touch, so prevented me from walking.  Following a series of visits to various doctors and specialists, my treatment involved using long-term antibiotics to avoid recurrent infections to prevent progression to rheumatic heart disease. I have had monthly penicillin injections at a local Italian Hospital in Istanbul for years to follow. It stung and temporarily numbed my lower limbs, causing me to limp for the rest of the day. Which was not the image I was trying to portray at the school! The distinct scent of the antibiotics etched into my memory to this day, and I used to get anxious when entering to a pharmacy until my late teens, as I come to associate the scent with my traumatic visits to the hospital. On the upside, we have always stopped by the fancy stationery shop by the hospital afterwards and I was allowed to buy a nice pencil or a scented eraser to stop me feeling sorry for myself.

Since then, I have been diagnosed with other types of arthritis to include  Juvenile Idiopathic Arthritis, Undifferentiated Spondyloarthritis (USpA), Osteoarthritis and Fibromyalgia. All of which had common symptoms of widespread chronic pain, fatigue, sleep difficulties and dyscognition. I have learned that arthritis was here to stay and if I were to have a 'normal' life, I had to learn to live with it. So I continued my life, pursuing my goals with a sense of resolve to not give in, by adapting the way I did things as and when it tried to stop me on my tracks, developing my own self management strategies as I go.

Making arthritis my job

Like most people, I have not come to recognise my true calling upon leaving the school aged 17, and spent 10 years in training and working in the IT field, initially in Turkey and later in the UK. At the age of 25 I have already had two children under the age of two, and having to cope with arthritis as a young mother spurred my interest in caring for others. So I have decided to re-train in healthcare. Having completed access courses to ease me into the British academic system, I have applied to study Occupational Therapy at the University of Salford. I can honestly say that it was the best decision I have ever made.

I really enjoyed my course and the extensive clinical placements I have undertaken during this time, so I couldn't wait to start as a clinician to work in the NHS. In fact, three months prior to my completion of the degree I had already managed to secure a Band 5 OT position at the North Manchester General Hospital to start upon the successful completion of my degree. But my degree also wet my appetite to study further and I was already contemplating on embarking upon a postgraduate degree. So when I serendipitously came across a PhD studentship advertised on the Guardian by the Primary Care Sciences, Keele University to study joint pain/ osteoarthritis in older people, I knew this was an opportunity I could not miss. I did -to my surprise- get the studentship despite my lack of research qualifications and being late to the interview and started in September 2008, soon after the completion of my degree.

This was a 3-year PhD studentship, and a very steep learning curve for me! There were times I thought that I was not cut for it, that I was an imposter and that I will be found out and shown the back door at some stage. I was lucky to have such wonderful fellow graduate students and we helped each-other to stand up when one of us stumble and fall. I took it day by day, challenge by challenge, and at the end of the third year, I was able to obtain a Research Assistant job at the Centre for Health Sciences Research, University of Salford. I was yet to complete my PhD, and entered into the completion phase [writing-up phase] of my PhD whilst working full-time as a single mother. At the time, the advice I received from everyone was NOT to take a full-time job whilst finishing off my PhD, as this could jeopardise my thesis submission. Nevertheless, my studentship has ended and I had to put the food on the table! Plus, I came back to Salford to continue further Occupational Therapy research in rheumatology by working with a world-leading Occupational Therapy Researcher, Prof Alison Hammond. As an Occupational Therapy researcher this was a great opportunity for me to apply the skills and knowledge I have acquired during my PhD. Well, saying that I will not sugar coat and pretend that it was not incredibly hard work, that I did not work through evenings and weekends to ensure my thesis was submitted, that I was not struggling with arthritis and related symptoms of chronic pain and fatigue that made it even harder to keep going under stress. Nor that I did not feel like the worst mother in the world when my children turned up at the school wearing a uniform on a day they should be dressed as a book character; because I have forgotten to read the school newsletter. It was hard but rewarding. So was my determination to make arthritis my job. 

Being a researcher did not get in the way of my clinical practice by the way. Shortly after the completion of my PhD, I started running a rheumatology clinic one-day/ week at the Mid Cheshire Hospitals NHS Foundation Trust which enabled me to ground my research on current clinical practices, and involve patients with arthritis and clinicians to contribute to the design, development and implementation of research projects we undertake at Salford. I strongly believe that this helps to bridge the gap between the creation of evidence-base practice in rheumatology and clinical utilisation of the new knowledge acquired through research. I now have a multi-faceted job in which I have various responsibilities as a Senior Research Fellow, Director of Postgraduate Research Studies and as an Advanced Clinical Specialist Occupational Therapist in Rheumatology. I love and cherish each role I have been given the opportunity to deliver, and take forward these expertise by participating in wider rheumatology communities such as the European League Against Rheumatism (EULAR) and the British Society of Rheumatology (BSR) scientific committees to represent health professionals in rheumatology and people living with arthritis, to influence training, policy and guidelines.

I made arthritis my job, and have written about my journey with arthritis to inspire the reader to pursue their goals, whatever this may be, despite the seaming limitations, challenges and road blocks. I think it will be apt to finish this longer than it was originally intended blog, with a quote from beloved Rumi, a thirteen-century poet, theologian, scholar and Sufi mystic:

"Everyone has been made for some particular work, and the desire for that work has been put in every heart"


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