by Sharon Clifford
I think of my journey with Rheumatoid Arthritis (RA) as like a bushwalker hiking along an unmarked track. A track that is sometimes steep and demands a lot of effort and struggle, but at other times the terrain is more even and easier to walk. There is no detailed map showing the upcoming twists and turns, but direction can be found through good doctors and medication which reduces the unpredictability of the path.
All good bushwalkers carry a backpack of supplies to get them through their entire hike. One of the most important lessons I have learnt during the past year has been to pull out everything I’m carrying in my backpack and sort out what I do and don’t need to get through my journey. Removing heavy burdens such as anxiety and doom and gloom thinking makes the burden lighter. Making sure I have a tool kit of strategies to help me navigate the journey is also essential. I hope to share with you some of the ways I have lightened my load and some of the ways I have added to my tool kit through my story.
My journey began about two years ago around my 37th birthday. I found that most mornings as I got out of bed and put my feet on the floor they felt very tender for several minutes. A few months later, when the joints in my fingers started hurting as well, I went to my GP. He ordered blood tests but they all came back normal and I was told not to worry.
About a year ago things started getting worse. My feet remained sore throughout the day and my fingers were becoming more painful. Several times I also experienced severe pain in my arms. I went back to my doctor for more tests and around this time I had my first major flare up. Over the period of a few hours my right hand and my left wrist became hot, swollen and extremely painful. Preparing the evening meal, cleaning my teeth and sleeping were very difficult that night and I was very anxious about what was happening. First thing the next morning I went back to the doctor. They immediately prescribed 25mg of cortisone (Prednisolone) and offered a tentative diagnosis of RA, pending an appointment with a rheumatologist. (Thankfully, I have not had a flare of that magnitude since beginning treatment).
In November 2007 the rheumatologist confirmed the diagnosis of RA and started me on Plaquenil (an old anti-malarial drug). I was quite anxious about starting medication but the rheumatologist reiterated the importance of early treatment in managing the condition. I felt quite sick during those first few weeks; in pain, tired, achy, sweaty, queasy and generally unwell, as well as feeling shock, fear and high anxiety. I searched the internet for information on RA, but most of what I read added to my fears, and I struggled to fight off a doom and gloom mindset. I began to feel much better once the medication started working. Also, as I learnt more about RA, I realised much of what is written pre-dates a lot of the current treatments, which are evolving all the time and are much more effective than older treatments. This has been very reassuring.
Five months down the track, Methotrexate, (a drug used sometimes in much larger doses for the treatment of cancer), was also added to the list. I am very grateful that I have not had any major side effects from any of the medications I am taking. (Twelve months later, I am still taking Plaquenil, Methotrexate and a small amount of cortisone).
What has helped me through the journey….
Resources in my ‘tool kit’ that have helped me during the past year include learning more about my condition and connecting with people with RA and inflammatory arthritis conditions. Arthritis Victoria has been an amazing resource and I have attended information sessions, borrowed books from their library, spoken to a volunteer on their information phone line, signed up for their newsletter and connected with support groups. Speaking with others who have RA, especially those who are further along the journey than me, has been encouraging. There is a great deal of comfort in speaking to someone who understands your feelings and has experienced the same symptoms. Such people usually have lots of practical tips to share.
Having a good relationship with my GP and rheumatologist is vital, and preparing for each appointment with a list of questions has also helped. I record a summary of my doctors’ appointments in a notebook, which has been invaluable to refer back to. I also keep track of my medications, blood test results and notes from the seminars I attend. It’s great having all this information in one accessible place, as it can be a bit overwhelming otherwise.<.p>
Being able to express my feelings to my partner, family and friends, as well as seeing a counsellor and recording my thoughts in my journal has been extremely helpful in coming to terms with the diagnosis and adjusting to the condition. I’ve realised that adjusting to a chronic medical condition is a slow process, involving grieving loss of aspects of health and dealing with a changed reality. Having a supportive supervisor at work and caring colleagues has also made life much easier.
Lessons learnt through the journey so far….
It can be very discouraging to hear insensitive people telling stories about old Aunt Marg who was “crippled” with RA and ended up in a wheelchair. Some people relish telling these stories, but it’s the last thing you need when you are trying to come to grips with your diagnosis! I have learnt to reply to these stories by educating people about the great new treatments that have become available since old Aunt Marg’s day.
Having an unpredictable illness such as RA has made me feel that life is precarious and I am more vulnerable than before. The flip side of this is that it also reinforces for me how precious life is. Being a worrier, I find it hard not to jump into the future, but I have realised the importance of practicing living in the present, one day (or sometimes one hour!) at a time, instead of allowing myself to ruminate on a gloomy future. Being grateful for the days I feel well, and the health I do have and all I am able to do, has also been integral to remaining positive.
I have been thinking about how RA (or any chronic illness for that matter) affects my sense of identity. I have realised the danger of allowing the condition to take over my life and over-identifying with it. This can come in the form of talking about it a lot, wanting others to hear about my symptoms and limiting my actions and plans because of it. I have been learning about maintaining the balance between being real about my feelings, and not dwelling on them or getting into “poor me” or “victim” thinking.
The journey continues….
One year later, I feel I am in a much better place physically and emotionally. My health is much more stable and that has allowed me to continue working four days a week and pursue my social life and all my other life commitments. I have enjoyed several holidays and continued to live a full life despite RA. I do experience some pain and discomfort but this is usually mild and does not affect my functioning too much. I sometimes feel quite tired and unwell and have bad days, but am learning to manage that with sleep, relaxation, pacing myself and allowing time for rest on weeknights and weekends.
As I move into my second year of life with RA, I feel more equipped to manage the condition with my ‘tool kit’ of information, support, positivity and being proactive about my health. I’m also realising the importance of attitude. I love the quote “suffering is inevitable, misery is optional” because it reminds me that, despite pain and discomfort, I can still choose to focus on the positive. During the past year, I have learnt a great deal about myself, RA and my ability to manage it. I hope I have been able to share some of these lessons with you.