Hello everyone, I’m Mary.

I’m a daughter, a sister, an aunty, a friend. I’m a wife to my awesome husband Peter and a mum to my beautiful four legged boy, a golden retriever named Shandy….and I have Systemic Lupus Erythematosus (SLE), more simply known as lupus…. but there is nothing simple about lupus!

Career wise, I was initially a school teacher for about 20 years, which I absolutely loved. Then due to my highly suppressed immune system and the infectious nature of a classroom/school environment I had to make a career change. I subsequently became a Public Servant and worked in the State Government in senior policy and planning roles in the Education, Training and Workforce Development sector for the next 17 years.

I now sit on the Board of Lupus WA and am committed to sharing lessons learned from my forty plus years of “lived experience” with lupus to support others to navigate their own lupus journeys a little easier.

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My diagnosis and early symptoms

My lupus journey began in 1973. I was 16 years old. So lupus has been my daily companion for over four decades.

In my case, my diagnosis came about through a random stroke of luck. Initially, I had mysterious bruises and swollen and painful joints, with major swelling in the fingers, knees, feet, toes and every other body part imaginable. At first this was put down to sport injuries. Then a diagnosis of childhood arthritis was made and I was treated for this for about 3 months.

However, I just kept getting sicker and sicker and my expanding list of symptoms (chronic tiredness, nausea, sensitivity to the cold, mouth and nose ulcers, dizziness and continually getting infections were proving to be a real mystery for the doctors. Remember this was 1973 and most Doctors at hardly heard of systemic lupus erythematosus, let alone knew how to diagnose it.

I then developed a red angry looking ‘butterfly’ shaped rash on my face. (As you may know in Latin lupus means ‘angry wolf’ and it symbolises this type of butterfly rash). Luckily for me my GP had just returned from the UK, where he had come across a number of lupus patients and he was familiar with this type of tell-tale ‘butterfly rash’. He immediately ran a series of blood tests specifically looking for lupus and BINGO positive indicators came back straight away.

At the time I was told that you could count the number of people with a lupus diagnosis in Western Australia on one hand. Finally getting a correct diagnosis was a relief, but it was also overwhelming and very frightening.

When I look back in the rear vision mirror, I suspect that I actually had lupus for quite some time before my actual diagnosis. I also have no doubt at all that my relatively early diagnosis and early treatment most definitely saved my kidneys. .. and also my life!

A synopsis of my lupus journey so far

In the 70’, 80’s and even 90’s lupus was still very much an unexplored frontier. There was very little known about lupus, very little research into lupus, and remember this was pre internet days so information was very hard to find. What little information there was around was particularly negative in terms of quality of life and life expectancy.

My initial prognosis did not look too good at all. My parents were actually told that at best my life expectancy would be in the vicinity of 5-10 ten years as I already had major kidney (lupus nephritis) and other organ involvement. I was gutted. I remember thinking “How can this be?” I was just a teenager and I was supposed to be enjoying life. Having a chronic, life threatening disease was definitely not what I had imagined for my life ahead.

Luckily by nature, I am generally happy, outgoing, resilient and positive. I am also very determined and driven. I remember thinking “No doctors are going to give me a death sentence and I am going to prove them wrong”.

In the first couple of decades my symptoms were evolving so fast and everything seemed so unpredictable. My symptoms kept expanding in both complexity and duration and progressed to include: photo sensitivity; fever and chills; swollen glands; sore throat; constant infections; thinning hair; skin rashes; skin inflammation; costochondritis (inflammation in the rib cage); pleural effusion (fluid around the lining of the lungs); pericarditis (inflammation of the pericardial sac surrounding the heart; and lupus nephritis (inflammation of the kidneys).

Simple tasks that most people take for granted like getting out of bed, brushing my teeth, dressing, talking, walking, thinking/concentration/processing information; and sometimes even breathing were difficult. Sleep became a welcome relief, when I could actually get to sleep because of what I called my “monkey mind”. I now know this was actually lupus induced central nervous system involvement (CNS).

During this period of time (1970’s, 1980’s, 1990’s) my lupus remained challenging. No sooner was one set of symptoms resolved than there would be new symptoms, new treatments and new side effects. There were many days when I wondered how I was going to get through the minute, the hour, the day and the week ahead, let alone still be here decades later.

It was exhausting being sick day in and day out; and it was exhausting just trying to live a ‘normal life’ whatever normal was supposed to be.

At this time my doctors were still just focused on treating my physical symptoms as they arose and these symptoms seemed never ending. However, I instinctively knew that I could not go on living like this. Then by a stroke of good fortune in 1984 I stumbled upon Louise Hay and her insightful book, “You can heal your life.” This book got me thinking about lupus not just as a physical disease, but as a total integrated package of mind, body, spirit and soul.

I subsequently threw myself into researching and reading everything and anything I could get my hands on about lupus, holistic health, lupus treatments and lupus trials. I even travelled to Mexico in the late 80’s to learn more about lupus and take part in new treatment regimes. This period of time represented a lot of learning and a lot of trial and error. I was learning a lot about myself, about lupus, what my triggers for a lupus flare were; what worked and what did not work to alleviate symptoms, and my doctors too were also learning a lot about lupus alongside me.

I gradually began evolving from that “passive” 16 year old girl (who took the medications she was prescribed without too much questioning or fuss) into a more informed, confident and “active” as opposed to “passive” patient. So at the age of 27, some eleven years after my initial diagnosis, my journey to wellness really began.

Not surprisingly, around this time my health also started improving, my medications started to be gradually decreased and life was finally starting to look up.

The unpredictability of lupus

However, lupus can be unpredictable and just when things were consistently going well for a good 8-9 years I had a major setback. I had picked up an infection following an overseas trip which played havoc with my lupus symptoms and eventually led to being admitted into hospital.

It was 1993, yet many hospital doctors – Interns, Residents, Registrars, and even Consultants were still not overly familiar with lupus, let alone the systemic nature of lupus. Tragically for me, some fundamental treatment errors were made at the hospital that led to devastating and life threatening consequences. I found myself in ICU in a coma for more than a week fighting for life. I eventually spent more than four months in hospital learning to talk, learning to feed myself and learning to walk again. This was followed by many months as an out-patient. I went back to work nine months later in a body brace and on crutches.

My good fortune was that at the time I was working at the Distance Education Centre   in WA, a workplace that enabled me to return to full time work on a gradual basis. However, I appreciate that not all people with a chronic illness have this opportunity and many consequently incur the additional stress of financial hardship.

Being in hospital for such a long period of time gave me time, lots and lots of time, to be STILL and to reflect, contemplate, read and exhaustively write a daily journal. This in many ways became a lifesaver. It led to an awareness that I needed to make some wholesale changes if I was going to not just survive this period of time; but also live the life that I wanted for myself going forward.

And so began my journey to undertake a complete stocktake/audit and rebuild of ME and my whole lifestyle and treatment regime.

Patient Centred/Partnership Model of care

I have subsequently drawn on lessons learned from years of “lived experience” with lupus to progressively develop an integrated patient centred partnership model of care/maintenance. This model addresses not only my physical symptoms but also focuses on me as a whole person – my body, my mind, my spirit and my soul.

I have worked hard to find and assemble a multi-faceted care/maintenance team of health professionals who really know and understand the many faces of lupus. My team includes the best immunologist, the best G.P and a range of allied and complimentary health professionals, and I am central in this team. If I am not happy about something I say so, if I have a question I ask it, if I have other treatment options I want to explore I raise them. The bonus is that my last major lupus flare was in 2003 and I have been off all lupus medications for well over a decade.

Gratefully, today I am happy and healthy and live a full and active life. Now my daily challenge is to continue to live well with lupus…and along the way to support others to make their own lupus journeys a little easier where I can.

My biggest lessons

1. That as lupus patients we can help to cope (with both the physical and emotional impact of living with lupus) by being “active” versus “passive” participants in our own self-care; and

2. That it is possible to live well with lupus.

Favourite quotes

“I am bigger than anything that can happen to me.

All these things, sorrow, misfortune and suffering are outside my door.

I am in the house and I have the key.”

(Charles Fletcher Lummis)

My motto for living well with lupus

“If you always do what you have always done, you will always get what you have always got.”

(Various Authors)