Rachel’s day always starts with a cocktail of medication and a good day is when she’s able to get out of bed and do some ‘normal’ daily living activities.
At times, she is profoundly disabled. Days on end unable to move, sit up, stand, walk, shower or change clothes, hold a spoon to eat, hold her neck up, hold a conversation or hold a phone to text or talk or ask for help.
She struggles with symptoms daily. In addition to debilitating muscle weakness, her symptoms include severe bone, joint and muscle pain, muscle twitches, tremors and cramps, chest pain and palpitations, migraines, neuropathy, swollen glands, cardiopulmonary complications, dizziness, difficulty breathing, dysphagia (difficulty swallowing/eating/drinking), difficulty talking, arthritis/degeneration, brain fog, whole system inflammation, vascular complications, insomnia due to pain and medications and significant fatigue and exhaustion.
Rachel now relies on Australian blood donations for immunoglobulin therapy every few weeks in hospital for the rest of her life. Emergency hospital visits still happen as well.
Rachel regularly uses disability aides such as a wheelchair, walking sticks, shower chairs, neck braces etc. She pays out of pocket for help for household duties, management of children at home and daily living support. She feels lucky to have access to quality care.
Living with a rare chronic illness that is largely invisible means Rachel has experienced discrimination and ignorance not only from doctors but from her own community and people close to her. Always with a smile and a little makeup, you could be fooled to think she isn’t in pain, having trouble sipping her drink or having trouble holding her neck up if you’re not looking closely.
Missing out on opportunities and experiences, losing independence, becoming isolated and being forgotten has significant impacts on people with Myositis. Groups and communities such as Myositis Association Australia have been a core source of support for Rachel in her journey and has made her feel visible. She is yet to personally meet anyone else with the same diagnosis but the Myositis Association records two others to be in the Brisbane region.
She hopes to see in the future more awareness of the Myositis group of diseases especially addressing the issues around pain management as well as focus on supporting those diagnosed and their families through the grief process.
Thank you for hearing her story.