Hi my name is Jenny. I am a 60 year old woman who has been living with lupus for over 30 years.
My journey with Lupus began in mid-1985 after the birth of my daughter in December 1984. Initially I put all my symptoms down to my new experience of motherhood. I thought all young mothers were exhausted (which they often are of course!), aching all over and generally just ‘out of sorts’ My symptoms had escalated by the end of 1985 to a point where I could barely get out of bed. My husband needed to do EVERYTHING and I needed to be loaded up with meds before he could go to work!
As with many of the autoimmune diseases there are lots of crossover symptoms and I was initially diagnosed with Rheumatoid Arthritis and treated accordingly but by July 1987 my condition had deteriorated. I was subsequently admitted to SCGH where I was then diagnosed with SLE, and so began my life long journey with Lupus.
The first few years were the toughest. Dealing with the ups and downs of extreme fatigue, continual pain, fevers, uncertainty regarding the future, many different types of medications (and their side effects), plus the never ending medical tests and doctor’s appointments. And all of this with a toddler in tow!
I was fortunate enough to find a lupus support group. The support group was an absolute life saver for me and my husband too! It helped me realise I was not alone and I not going mad either! These were the days long before ‘Dr Google’, information was very scarce and the support group also became a great source of information.
After these first few very difficult years I learnt to live with my new ‘normal’. I realised i had to take control and I took steps to help with my own journey to my new state of wellness. I tried not to give Lupus the ‘leading role’ in my life. As with all chronic illnesses, they can totally consume you and i have learnt to make Lupus just a small part of who I am.
Currently I am in a very good place.
I am only on a very small amount of medication (I have never been able to be medication free) and I live life to the full.
I think having lupus has taught me to take each day as it comes and try not to sweat the small stuff.
