I’ve been living with prolonged episodes of debilitating pain since 1986. I call these episodes “attacks”, and I experience several major attacks each year, sometimes as long as seven weeks.
My initial symptoms were a red right eye, and severe pain down the right side of my face, which indicated Retina Bulbar Neuritis (inflammation of the optic nerve).
The same day my symptoms began, a feeling of numbness developed down the right side of my body, and in the middle of the night I called for an ambulance, thinking I must be having a stroke.
I was living in a remote rural area, with three young children, and it was very frightening. My husband was away at the time.
The next day I was admitted to Westmead Hospital in Sydney with what the GP thought was Bell’s Palsy (a nerve disorder that affects the face) and after a week of tests, the neurologist diagnosed possible MS (an autoimmune disease that affects the central nervous system).
Over the next 15 years, I managed to raise my children and continue working. I learned not to be alarmed by the attacks, but to just live with them, and take time off work and other duties, until the pain went away. But at 46, with my children grown, I had to resign.
The symptoms have baffled doctors because as well as the “pain symptoms” I describe here I also have Rheumatoid Arthritis and Parkinson’s Disease.
I do everything possible—psychologically, physically and medically—to help myself. I do yoga, meditation and relaxation exercises, and take medication. But nothing seems to help.
When an attack strikes, it’s very disabling. I need assistance with walking and routine self care—including eating.
After extensive testing, my current diagnosis is Migraines Without Headaches.
We recently had to renovate our home to help me navigate it when I’m in pain, which, along with the tens of thousands we pay for medical expenses, is a strain on our finances.
More needs to be done to help people in my situation.