My Story: I Didn’t Really Know

By Jo, October 2016

When I first got ‘sick’ in late 2013 I didn’t really know what was going on... I had swelling in my eyes, and was suspected that it was conjunctivitis, but with no other family members succumbing, it seemed unlikely.  The swelling subsided in one eye, then, hey presto, the other eye swelled.  Tests showed nothing and the swelling subsided. 

A few weeks later a swelling appeared in one of my hands, along with a lot of pain.  I took myself to A&E, they suspected ‘senosivising tendonitis??’ and suggested draining the tendon – eek!  However, when I went back for a return visit, the culprit had disappeared, but not for long!

The next 6 weeks I became a regular at A&E, with swellings, pain and a lack of movement in both hands, wrists, and shoulders.  My GP prescribed Prednisone and while I didn’t feel great on it – I became more aggressive and a chronic insomniac - things at least seemed to ease a bit and I was able to push through and continue working and helping out in our family business.  Then one Friday in January 2014, when I didn’t want to spend yet another night at A&E I saw the after hours GP who requested a whole heap of blood tests.  It seemed the culprit had been found... I was diagnosed with sero positive Rheumatoid Arthritis (both RF and Anti CCP were positive).  I remember thinking ‘thats ok’ as I knew my dad had lived with Rheumatoid and Osteo Arthritis for many years and had in fact medically retired at 38yrs old.  My GP sent off a referral to a rheumatologist, who in early March confirmed my diagnosis and suggested starting on Methotrexate.  I felt relieved to have an early diagnosis, and thought I would be able to get things under control relatively easily.  However, I didn’t count on intolerances to medication, particularly prednisone, and had a very ‘bumpy ride’ for a number of months.   My side effects were often dismissed as ‘anxiety’ until it became impossible to ignore that something was seriously amiss.  I now tend to avoid A&E but have a great GP and now tend to self manage flares rather than take the ridicule and dismissive nature of the hospital, who unfortunately know very little about managing chronic conditions.

It became impossible to ‘keep up’ with the working life I had prior to diagnosis, and this has been by far the biggest lesson for me.  Learning to accept that my disability wont ‘go away’, that the fatigue and flares will continue to be unpredictable, and that employers aren’t always accommodating!  The misconceptions about the disabling nature of both Rheumatoid Arthritis and Fibromyalgia, and the side effects of medications that are a mainstay of treatment can change us enormously.  Not working has been a massive change, both financially and socially – having worked since I was 17 much of my social circle was either work colleagues or other working adults, and most of these drifted away.

In January 2015 I was also diagnosed with fibromyalgia, and began a journey through Workers Compensation, Fairwork, Insurance and Centrelink systems when I lost my employment due to my inability to return to my ‘pre disability’ position and hours.  Many lessons have been learnt – the real meaning of marriage vows, the importance of family, being honest about limitations, the need to pace, pace and pace!

While I knew that my dad had ‘both types of arthritis’ I didn’t know how debilitating Rheumatoid Arthritis could be, and I have always tried, wherever possible, to be honest with my daughter.  She knows what my condition is, and that some days are better than others, that I have stopped working due to my disability.  The loss of independence has been difficult to say the least, and the inability to plan things has also been a massive change.  Since my diagnosis I have also found that my mum has a different auto immune connective tissue disorder (CREST), that one of my brothers also has Rheumatoid Arthritis, and that my other siblings have either auto immune or connective tissue disorders.  So, the genes are not so good, but we cant pick our genes!

I have learnt to be aware of changes when I start new medications or change my dosage, but try not to be over cautious.  Due to my intolerances, I try not to make a lot of changes, and my medication has been stable for nearly a year.  Both my GP and Rheumy are very conscious of my intolerances, and sometimes I accept less relief rather than changing for the sake of change.  My medication hasn’t fixed me, but I function better on it than off, and for that I am grateful.  Through social media I have met others on the RA roller coaster, and I know that not everyone gets even the relief I do.  My logical brain struggle with the flares when my bloods are ‘normal’, but I am gradually getting my head around bloods not being everything!

As for the future, I am concentrating on my family, and learning to live with my health as it is.  I try to look after both my physical and emotional wellbeing, and have found support in some surprising places.  Art is my therapy and distraction, others write – I draw!  Learning to listen to my body and not keep trying to ‘push through’ has been a life lesson, and maybe if I hadn’t been diagnosed I wouldn’t have slowed down?  Maybe thats what RA has ‘given me’... an appreciation of what I have, and a realisation that work doesn’t define me?  That I am a mother, wife, daughter, sister, friend who happens to have disabilities, but I still have much to offer – even if its not in the workplace!  I have accepted that many places aren’t ready to adjust and accept fluctuating and invisible disabilities, and the stress caused trying to be a round peg in a square hole is too much for me.