Mark's story

Exhausted. Perhaps not the most eloquent way to introduce the story of my life with JIA, but given that I was diagnosed around 21 years ago when I was just eight years old, I thought it would be best to start from the beginning and the earliest thing I can remember. And the earliest thing I can remember is waking up one morning and feeling unusually exhausted.

I hadn’t stayed up late the night before or done anything particularly strenuous the previous day, but still I felt tired. However I just shrugged it off and set about starting my day as normal – having breakfast, watching Saturday morning cartoons with my brother and sister and then we all went out shopping together as a family.  At first I was fine, the next thing I remember is pain. Sudden, aching pain in my left knee. Quickly I went from a normal walk to a slow limp, hobbling behind the rest of my family. By the time I had been helped to the car and we had got back home the pain had only gotten worse and I don’t think any of us were prepared to see the sight of my giant, swollen knee.

So off I went to the hospital and thus began a long and difficult road to getting a diagnosis, involving different specialists, blood tests, x-rays, an MRI scan and a variety of different theories. I remember being confused and quite angry about this at the time. Surely one of these doctors must know what is wrong with me? Why can’t one of them just say for sure what it is? Eventually after a few more months and another flare I got the diagnosis. I remember excepting the diagnosis quite quickly myself (after all, it was good to finally put a name to what was happening) and most of my friends at school rallied around and were accommodating. However, I was frustrated by the reaction of others whose immediate reaction was disbelief - ‘but you are too young to have arthritis’.  It was as if I must have got it wrong or I was exaggerating my pain.

However I learned to accept this and up until this point I had coped relatively well with the pain by using paracetemol and NSAIDS (Naproxen), but that changed about a year later when it spread to my hips. The first flare in my right hip was particularly painful. I can remember one particular night vividly, I was unable to sleep because every time I tried lying down the pain was excruciating and would cause me to cry out in agony. My parents called out the emergency doctor and I was given some painkillers which had little effect and was admitted to hospital a couple of days later. On being admitted to hospital I had an ultrasound on my right hip and fluid drained (a particularly frightening experience given the size of the needle!). Afterwards I was in hospital for a week, taking penicillin and naproxen, having daily hydrotherapy (which I loved) and physiotherapy (which I hated). My parents would take turns to take time off work and sit with me in the hospital, while I was hooked up to traction

After that and another weeks stay in the hospital the following year, I would have flare ups twice a year, almost like clock work until my mid teens when suddenly, it stopped. The hope was that I had grown out of it and for many years I thought I had. I went off to University, got my degree and travelled around Australasia, SE Asia and lived in China for a couple of years. Now even during remission I would hardly describe myself as 'athletic' and I would sometimes feel achy, but certainly I could be more active -  I played sports, went swimming, diving, hiking, white water rafting; and I could do these things without feeling held back.

Unfortunately, this did not last forever and a couple of years ago, shortly after I had started a job teaching, I began to feel tired, slightly lethargic and stiff. At first I simply put this down to the demands of teaching and working very long hours. But as time wore on the fatigue got worse and my hips flared more often until one evening after speaking with my parents I took a long look at myself and realised soldiering on wasn't working and I needed help.

Fortunately, because of my previous diagnosis, being referred to a Rheumatologist a second time and starting treatment was more straightforward than the first and within a few months I had started a treatment plan of methotrexate and steroid tablets. At first this was quite difficult as I experienced nausea, fatigue and dizzy spells from the methotrexate, however after switching to injections this quickly cleared up.

Nearly a year on and I have had to make some life changes - because of the methotrexate I drink a lot less alcohol and I’ve had to learn to be pace myself better and plan a little more what I do to so as to avoid over exerting myself. However, with the benefits of subcutaneous methotrexate injections I am feeling a lot healthier, happier and most of the time, in little pain. I am grateful to NRAS for the excellent information and support I was offered after my re-diagnosis and I feel privileged that I now work here myself, working towards a better life for all those with RA and JIA.