My Rocks Amidst the Hard Places

I have lived with chronic pain and fatigue of one sort or another for most of my life. When I was around four years old, both my youngest sister and myself were infected with Pertussis (Whooping Cough) and spent a long time in hospital. I don’t recall what my sister’s diagnoses were at the time, but the Pertussis infection developed into Pneumonia for me and resulted in a Pneumothorax.

I still recall endless rounds of physiotherapy for months after leaving the hospital, and the terrible pains in my hips - due to a long course of antibiotic injections - which kept me awake at nights so I experienced constant fatigue. That pain has stayed with me all of my life. I remember being sickly as a child. I was constantly on antibiotics for strep infections and then taking iron supplements as I was also chronically anaemic.

In my thirties, I contracted Ross River Virus, a mosquito borne disease which is notorious for leaving victims with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I was initially diagnosed with CFS but this was later changed to a diagnosis of Fibromyalgia Syndrome, Osteo Arthritis and a very exotic sounding, Spondyloarthropathy. Well, at least I now knew why I was always hurting in one place or another.

Sometimes when my children were small, they would come to me and say “My finger hurts,” or “my leg hurts,” to which I would want to reply “My everything hurts.” Being a loving mother though, I would nurse their hurts and kiss their boo-boos and try to ignore my own.

My strange mix of disabilities means that my life is a constant balancing act between too little activity and too much. There never seems to be that “Goldilocks zone" of just enough or just right. I’m either hurting because I haven’t moved enough, or I am hurting and flat on my back in bed because I have done too much.

People who get to know me often remark that I am one of the most chilled out people they know. The plain truth of it is, I can’t afford to be frenetic. I have learned – in the hardest of hard ways - that adrenaline is not my friend.

One dose of anxiety, complete with racing heartbeat, swirling thoughts and the accompanying rush of adrenaline can be enough to put me to bed for a month.

So, I have learned and relearned, and learned over again the importance of breathing in, breathing out, and letting go.

Looking back over this article, it would be easy to get the impression that my life is miserable. That couldn’t be any further from the truth if it tried. I have a good life. I have built a circle of family and friends who are my rocks when I need a steadying hand, and my soft place to land when I am too exhausted and too sore to remember to pack my parachute.

They go with the flow and roll with the punches of my (dis)abilities and they give me the space and the grace to retire from the field when I need a respite; only to find them waiting and cheering me on when I return from fighting my demons of pain and exhaustion.

I guess, in a sense this article is for them. My loving family, my friends, my health and allied health care champions who pick me up and put me together every time I lose my balance and need a little extra assistance.

Thank you all for being my rocks when I am in that hard place.