I kept pushing forward, and now I absolutely love my life

I am 24 years old, and at aged 19, my world was turned upside down when I was diagnosed with an aggressive form of RA. Somehow I kept pushing forward, and now I absolutely love my life and everything about it! 

My name is Eleanor Farr – known as Ellie or Ell to my friends! I am 24 years old, and at aged 19, my world was turned upside down when I was diagnosed with an aggressive form of rheumatoid arthritis. 

Up until then, I had lived a ‘normal’ life with a happy childhood and no indications of what my future held with regards to my health. Whilst studying at Leeds University, I became incredibly poorly. I had contracted a strain of what’s often referred to as ‘fresher’s flu’, and I couldn’t eat whilst relentlessly vomiting for about a week. I recovered from this and days later was hit with an excruciating pain in my left shoulder. I hadn’t linked this to being unwell – I was taking strenuous exercise classes at the time and thought I had dislocated it. After a trip to A&E with no luck (poorly timed as it was Halloween night!!) and some blood tests at the doctors, it was revealed that the inflammation in my body was ‘sky-high’ and one of the highest the doctor had ever seen. I was quickly referred to Chapel Allerton Rheumatology Hospital in Leeds, where, in January 2014, I was diagnosed with rheumatoid arthritis. It is possible that the sickness bug I had, had ‘kickstarted’ my autoimmune disease whilst my immune system had been working on overdrive to fight off the sickness bug. 

I don’t remember being particularly upset when I was diagnosed. The biggest worry, to me, was having to take medications for the rest of my life. If I’d have known then what I know now I’d have completely broken down; so it’s probably for the best that I was none-the-wiser at the time. I thought it would be a case of taking some tablets and if I didn’t take them then I’d have some pain in my joints – but so long as I took the tablets, I’d be fine. I couldn’t have been more wrong, and I didn’t know that I was about to enter into the fight of my life. 

My disease progressed rapidly, and the pain in my shoulder became pain in my feet, knees, ankles, wrists, neck, elbows and fingers. I often couldn’t move my swollen joints, and the pain was completely unbearable. Whilst my disease became increasingly powerful and destructive, the hospital worked hard to find a medication which my disease would respond to. The next problem I faced was that my body rejected most drugs I tried, or I struggled with the side effects. The first medication I tried was Methotrexate which not only made me very sick, but my liver reacted badly to it, and I ended up hospitalised whilst they brought the situation back under control. The next drug I was given was Hydroxychloroquine, which didn’t come with any adverse side effects other than headaches, but it simply didn’t work. The next stage was a weekly biologic injection, one of the Anti-TNF drugs which I’ve heard also termed a ‘miracle drug’. I had high hopes for this treatment and after almost half a year of injecting myself in the leg each week with a pen that caused my leg to sting so much that it would have me in tears; it was clear that my body was not responding to it as the disease was still as active as ever. 

Meanwhile, whilst I went from drug to drug, each one failing, my disease was progressing and becoming increasingly destructive. I eventually reached the stage where I was bed-bound and relying on daily morphine and steroids to allow me some limited movement. The morphine made me very sick, and I struggled to hold any food down whilst meanwhile, the steroids caused me to gain a lot of weight through water retention and the ‘moon face’ side-effect. I hated how I looked and having gone from being a store ambassador at Hollister to being overweight, puffy and bloated; I really struggled to come to terms with the changes in my appearance. The long-term steroid use also caused me to be diagnosed with Osteopenia as steroids cause a loss of bone density. I couldn’t take any other strong painkillers as my liver responded poorly to them. By this point, I was not only dependent on my Mum to help me with simple tasks such as dressing myself, but I was incredibly depressed. Being the young age I was, I found it incredibly hard to think I might have to endure this level of pain for the rest of my life. 

I came so close to being permanently depressed, but something kept pushing me forward. The slither of hope that one day I might get better pulled me through. Thankfully the next drug I was given was Rituximab, and it pushed my disease into remission. I was now 21 years old, and after enduring two years of Hell, I was beginning to reclaim my life. In January 2017, I had a left total hip replacement which was life-changing! I had left doctors baffled at how my arthritis had completely destroyed such a large joint in such a small space of time, but the hospital was quick to respond, and by March that year I was walking around without crutches like nothing has happened! 

The combination of the surgery and Rituximab have completely given me my life back. I have permanent damage in some joints where the cartilage has all, mostly or partly gone and this causes me some pain; but it is absolutely incomparable to the level of pain I was in previously. As long as I am careful and don’t do anything too strenuous, I am living a pain-free life without limitations. Ever since my life as a young adult was snatched away from me, I have lived every single day like it is my last, and I am so proud of everything I have accomplished. I started up my own photography business when I was 22, Stretton Studios Photography, and I absolutely love my job! I am now a finalist in the Miss England contest and qualified as the top fundraiser in the North for my fundraising for PAPYRUS, a young suicide prevention charity. I reached national news for being in Miss England with my condition. I recently won a Local Heroes Award for being named the Young Achiever of the Year. And now, I have been asked by NRAS to be an ambassador, and I am bursting with pride to be able to represent such a wonderful, worthwhile charity. 

If anyone struggling with their pain is reading this now, then please pay close attention to this. I was dragged through Hell by both hands, and I honestly put such little value on my life when I was in such pain. I couldn’t see any meaningful future – how could I when my Mum had to dress myself each day? My life felt meaningless and worthless, and I felt like a burden. I relied on my family and boyfriend to do everything for me. My younger brother and sister were sitting exams which got completely overlooked because I was the focus of my parents’ attention. My sister’s birthday even slipped completely under the radar one year because I was in hospital. I was in agony every second of every day, my body wasn’t responding to any drugs, I hated my appearance, I cut myself off socially, and I could barely move out of bed. And yet somehow I kept pushing forward, and now I absolutely love my life and everything about it! One word to take from this is HOPE. Because that’s what’ll drive you forward and that’s what’ll see you across the finish line. Hold OPain Ends.