“At 17 months old I was diagnosed with Juvenile Idiopathic Arthritis. Now at 23 years of age I have rheumatoid arthritis (RA). A handful of my joints are also affected by osteoarthritis (OA).
“Arthritis New Zealand supported me from an early age and in 2008 I was the recipient of the Arthritis New Zealand Young Achiever award. In my experience, RA has been unpredictable in a number of ways. Triggers of flares can be different, affected joints can be different, the pain can be different and the way the rest of your body is affected can be different too. This makes it difficult to manage.
“For five years or so I have been having Rituximab infusions, along with the occasional painkillers, anti-inflammatories, and steroid injections. This had kept my RA symptoms mostly under control for the majority of that time, although I am currently mid-flare and have been for a few months now.
“When I last had a flare like this I was 14 years old. It affected my schoolwork, my friendships, my ability to play sports, and my self-esteem. As an adult, it affects my ability to work, to perform household chores, and to be the mum and partner I would like to be. It isn’t even just the obvious things that become a struggle during a flare – like running marathons and moving heavy furniture. The small things like doing up your own jeans, opening a bottle of water, buttering toast, tying your kid’s shoes or buttoning up their pyjamas… Every little task that would usually be taken for granted can become a major struggle during an RA flare; and making the adjustment from being able to do it all to not being able to do much at all can be frustrating and upsetting.
“In addition to this, RA patients are often severely immune-compromised and susceptible to infections as a result of disease-modifying anti-rheumatic drugs. For the past 2 and a half years I have had ongoing sinus infections, ear infections, respiratory infections, and bladder infections – the whole lot! Having a debilitating disease is difficult enough without being sick 24/7. It also means a lot of trips to the GP or A&E, both a hassle and it’s expensive, and it also means more and more medications.
“My biggest struggle at the moment is work-related. Last year I began working as a support worker three mornings a week; going into elderly people’s homes and assisting with personal care and home management. I enjoy this but it’s too hard on my body and with both my clients and I having weak immune systems it’s not ideal. I will have to give up work soon, but there are not many jobs out there that offer flexibility in working hours, also part time, which suits my health as well as my most important role as a mum to my two little boys.
“I am fortunate to have access to a Rheumatologist who is proactive, clued up, provides options, and gives me the final say on how I would like to proceed with anything to do with my health and my body.
“What I would consider a good day for me, a healthy person could consider a rough day. Experiencing pain, inflammation, stiffness or weakness on a daily basis is normal for me. Flares are incredibly painful. I choose to focus on what I am capable of doing, as opposed to focusing on what I can’t. But I think it is only natural for us all to have moments of frustration and ask “why me.” I could have it worse but I could have it better too, but at the end of the day it is what it is. Living with RA certainly comes with plenty of challenges, but it also comes with some valuable life lessons. One of my favourite ones is; be kind to yourself.
“And that’s why support organisations like Arthritis New Zealand are so important, to help people manage when they are struggling, and even when they’re not.”