Dancing with the Invisible…

At 48, I had it all. My career was at an all-time high, travelling nationally and
internationally, I was meeting all my life goals. A mother, a grandmother, a wife, a
manager, President of a volunteer organisation, Board member and Director for various
organisations and a co-owner of a small business with my Husband. Life was perfect, I
was content and unstoppable………….until Immune Mediated Necrotizing Myositis
entered my world.

I started to notice little changes in my body that grew worse as time went on. I struggled
to get off the floor after playing with my grandkids, I began tripping or stumbling for
reasons that didn’t seem obvious, at times thinking how clumsy I was becoming as I grew
older. I also started to feel pain in my muscles and sensations of cramping and like I had
pulled a muscle. It got to the point where nursing my grandchildren became too painful
and that broke my heart.

By the time I was diagnosed and started treatment I had a real fear that my life was
coming to an end. I struggled with extreme exhaustion and fatigue, I was experiencing
breathing and swallowing issues, I cried in pain from the muscle cramping and pulled
muscle sensations every time I did something. Simple tasks like cutting vegetables
became a struggle. Having a shower left me breathless, exhausted and in pain. For the
first time in a long time, I was afraid.

It wasn’t until I saw a fourth GP that I finally felt some relief, at last, a doctor that listened
to me, a doctor that didn’t make me feel like I was going crazy, and so it all began, blood
tests, scans, biopsy, doctors, specialists, the list goes on……It took several months
before I finally got a diagnosis. Going through the diagnosis process for a rare disease was
traumatic for me, I had never been sick prior to this disease, being a sick person was hard
to navigate and even though I got diagnosed with a rare disease, I was so happy to finally
have an answer. I later learned that I was one of the lucky ones, I have heard stories of
other patients with Myositis that had to wait years before getting a diagnosis. My heart
hurts for those people that still wait for a diagnosis.

In the beginning, before I was diagnosed, I thought to myself, I am going to get a simple
diagnosis, take medication for a while and then I can jump back into my busy world and
get on with life. How wrong I was!!

I was described by Specialists as an “unusual” case of Immune Mediated Necrotizing
Myositis. It was hard to accept and some days it is still hard to accept, not only do I live
with a rare muscle disease, but I am also an unusual case, why couldn’t I just fall into the
easy box…!! But then again, I have never done anything in half measures.

Some days are hard when you have a disease that attacks you on the inside, whilst on the
outside you look normal. It’s not until you have a really bad day that it becomes obvious
to others. I really am dancing with the invisible.

For now, I have decided to put my health first, something that is not easy to do for
someone like me, sitting still and slowing down is not something I was good at, that is,
until I got diagnosed with IMNM. Life now is about attending my doctors and specialists’
appointments, blood tests, infusion clinics, and various other medical appointments and
learning how to live a new life. I read more books, I have learnt to knit, I have cut back on
a lot of my commitments, I have learnt to let others help me and to be kinder to myself. I
have learnt to listen to my body, when I have done too much and am in pain, it’s time to
rest.

Life is good and I am still content, I have good and bad days.

My motto at the moment “Life is not about waiting for the storm to pass, it’s about learning
to dance in the rain”.

So, life for me is about dancing with the invisible!