Val’s Journey – Polymyositis and Interstitial Lung Disease.
Everybody has a story that is significant in their lives and I don’t believe my story is any more significant than any other. But I do accept this is my personal moment and my experience, such as it is.
I am grateful to have had a fairly healthy life with nothing outstanding happening in my personal health history until I married and had my 2 children. I kept my tonsils and my appendix when others seemed to get a week off school but not for me. Contracting the usual for the day, regular childhood conditions, measles, mumps, chicken pox were common place and generally well accepted. We had that kind of community sharing. Vaccination for other diseases were given and accepted as the norm.
Early in my twenty’s without precedence I had a swollen goitre, again fairly common for the tableland region, not enough iodine rich soil it was thought perhaps to be the cause. I was not on my own with goitre issues.
However, for me, on further examination it was found to be an autoimmune disease called Hashimoto’s Thyroiditis, the first of many for me! Controlled by medication for many years and then with a big flare of the disease I underwent radiotherapy treatment followed by a lifetime of medication. Then followed a severe skin presentation of a large rash on my back and trunk that was itchy as hell! This is called Grover’s Disease and again autoimmune. Like most diseases of this nature it comes in flares.
The diagnosis of Schroegen’s oesophagitis followed closely by the diagnosis of Polymyositis.
This came as a quite a shock as I had no idea that my “arthritis” had another name. It was 1999 and my mother was diagnosed with terminal liver cancer. I had just been appointed as the Palliative Care Liaison Nurse to my hospital and my mother became my first patient.
Needless to say, this was an enormous strain on my health and I quickly succumbed to the first debilitating flare which took around eight months to be properly diagnosed. I do believe that I in fact had symptoms way back to those first months of the onset of the rash.
I found myself confined to my bedroom for around 6 months as I could barely get out of bed, on same days I simply couldn’t do even that and let alone brush my own teeth. My Husband was also ill at that time and the whole ghastly saga was managed by my brother Bill. Bless him, his nurse training kicked in and he came every day and helped me with passive exercises on my arms and legs and did lung breathing exercises. I was really quite unwell. I lost my job, my career and my voluntary nursing officer’s role at St John Ambulance, a very big loss indeed. I tried very hard to be grateful for my life and the support I received from my family but there was little from my employer. They declared me totally and permanently redundant in 2001. I began treatment following two muscle biopsies and EMJ, clinical appearance and blood tests to confirm Polymyositis.
Around this time there was a radio presentation given by Anita Chalmers and my brother said I should ring her as she has what I had been diagnosed with. I said he was wrong and that nobody had what I have got because I was so special and woe was me! As it turned out I spent a few hours on the phone with her as she was truly the only person who really understood what I was going through. The daily unrelenting pain, the inability to make my legs do what I asked of them, the urinary incontinence as I couldn’t get to the toilet in time and the cost of incontinence care. The list of troubles seemed to be endless.
I began treatment on Methotrexate, folic acid and steroid therapy. This came with oesophagitis care, anti-inflammatory care, pain management, incontinence care, regulatory diet for swallowing management and exercise for standing and stability management. Getting out of a chair was a real challenge and we reorganised our bathroom to accommodate both our needs.
My recovery at this time took a good twelve months back to the stage where I could walk around at the shops without assistance.
Travelling was an issue but Lindsay and I went to our first Myositis meeting. Up until this time I still had it in my mind that it was all a really big mistake and that I didn’t have this incurable, degenerative disease. Denial is very real! I was a very busy lady and had no time for this nonsense.
We arrived at the first meeting and I was still unsure, believing that we were at the wrong place. Then I saw another person struggling to get out of their car and then that person walked liked I did. I burst into tears saying “I think I have arrived”.
From that time to this I have never stopped trying to stay on top of my symptoms. I listen to advise and follow my treating Doctor’s orders. I have developed Interstitial Lung Disease in 2006 and have a change of treatment. Thankfully I am okay with this particular stage of my disease. Yes! my disease! As I now own it and it is under my control.
I returned to nursing and have now been nursing over 42 years and love being able to participate in this privileged position. I continue with volunteering and have now over fifty years with the St John Ambulance organisation.
Perhaps that is why I was nominated for the 2022 Senior Australian of the Year, an award I feel so grateful and humbled to received.
With this opportunity I promote the very worthy program of first aid for learner drivers.
At every opportunity as the 2022 Senior Australian of the Year I promote awareness of myositis to all who will give me the chance to address them and then some again.
It is through raising awareness and promoting research into the various areas of myositis care and understanding of this disease to all Australians about Myositis that we can realise the care and treatment that is necessary for all our patients.
I am now diagnosed many years and remain under the care of my initial treating specialist. There are days when I struggle to get going and pull it together, but, I believe in the power of gratitude and the expression of such at every opportunity.
So, I am grateful for my life and for having such a challenge as Myositis as it has asked of me to try every day to be a better person and to remember that I have a life far better than many others.
I have met so many fabulous people in my life but none so much more than the family of myositis patients, carers and health care workers as they are truly remarkable people.