I’ve lived with Myositis for approximately 17 years. After taking 6 years to achieve a diagnosis, I understand the need for increased awareness and education for Myositis.
My first symptoms were subtle. Perplexing reduced endurance for walking, difficulty rolling over in bed, getting out of chairs and fatigue over several years, eventually led to an MRI on my legs. The result suggested Myositis. A confirmatory thigh muscle biopsy was undertaken disclosing a diagnosis of Interstitial Myositis. I’ve taken Prednisilone since that time but the dose is now very low. Eventually, trying to maintain long working hours and life with Myositis became too exhausting and I retired from work.
Fortunately, my muscle weakness has progressed slowly. I commenced Tai Chi lessons upon being diagnosed. It’s a gentle form of exercise which has helped retain balance and ankle strength. I also undertake 2 pilates classes per week and try to walk most days. A tub of hand putty is beside my bed and I usually do a few hand exercises before falling asleep. Daily cooking and some gardening also keeps my fingers moving. Despite these activities, I can feel creeping weakness in my hands, thighs and shoulders.
I’ve provided support to patients and carers through voluntary roles with the Myositis Association – Australia Inc, since being diagnosed. I’ve become President of MAA and along with our Committee we’ve engaged in building awareness, conducting patient support group gatherings and conferences, producing information brochures, publishing articles, reworking the MAA website, being interviewed by media, liasing with researchers, fundraising and advocating to politicians.