"I felt cheated when I knew that I couldn’t go home. Cheated by fate, I guess ... After the first meal in the nursing home I broke down. I felt awful," writes Lydia, who reveals what it's like to live with multiple sclerosis.
Preview above: Insight explores what it’s like to live with multiple sclerosis, what causes it, how effective are modern treatments and how close is a cure? Full ep. on SBS On Demand.
I am 46 years old and I live in an aged care nursing home. The story of how I got to this point began when I was just 20 years of age.
At that time, I was a third-year medical student at Monash University, studying to be a doctor.
I began to experience impaired vision in both eyes. I had difficulty reading the board in lecture theatres and small street signs. I had difficulty reading the fine print in text books. My vision became blurry when I went for a jog. For about a month, my eyes hurt when I moved them.
I wasn’t scared. I thought that I needed glasses and that my vision problems would be corrected with lenses.
I went to an optometrist and after two eye examinations he was unable to give a diagnosis of my eye condition. A General Practitioner then diagnosed me with bilateral optic neuritis, inflammation of both optic nerves. I was referred to a neurologist and a CT scan of my brain revealed widespread areas of demyelination (damage to the coating of my nerve cells). I was prescribed one month of oral anti-inflammatory medication and sent on my way.
Continuing with my medical degree, I found that study was an excellent distraction from my visual problem. I enthusiastically pursued the social activities of many of my peers, but just one year later, when I was letting my hair down and enjoying uni life, I was diagnosed with multiple sclerosis (MS). I was only 21.
From the beginning, my MS has always been slowly progressive. Fortunately, I have never experienced significant MS-related pain or fatigue so I was able to carry on with my life – but I always knew that it would eventually progress and take over my body.
Despite the obvious challenges, I completed medicine in 1996 and I was able to work as a medical practitioner for 14 years in jobs that did not require fine visual acuity.
While I experienced declining hand function over the years, it wasn’t until 2000 that doctors said I needed to begin treatment for my MS.
My family were always supportive, but I’ve had relationship difficulties in the past due to my disease. My de facto boyfriend of 6 years told me that he was having trouble coping with my MS, saying he hated seeing my physical decline. So, I left. At that point, I was using a walking frame.
Despite the treatment, my MS became complex and gradually affected my bladder function and my ability to walk. I progressed from requiring the assistance of a walking stick, to a walking frame, to a wheelchair and I developed a tremor that occurred with activity. My hand function declined further and I became legally blind.
I felt cheated when I knew that I couldn’t go home. Cheated by fate, I guess. I had tried so hard to live independently.
My employers were always assistive with my changing work abilities, but in late 2012 I became unable to transfer independently between my wheelchair and different locations, such as the toilet or my mobility scooter. I was admitted to hospital, followed by three weeks of neurorehabilitation for my MS. Then I was admitted to a nursing home in January 2013. I was only 40. Six years later I’m still here, not likely to ever return to independent living.
I felt cheated when I knew that I couldn’t go home. Cheated by fate, I guess. I had tried so hard to live independently. After the first meal in the nursing home I broke down. I felt awful. After consulting a GP, I saw a psychologist. I combat future feelings of despair by keeping myself constantly occupied.
Now, I am very involved with MS Limited, the previous MS Society. I am an MS Ambassador and undertake public speaking engagements. I am involved in peers support for three young people in nursing homes with MS. I hope that I can help others by performing these activities. These actions are ways of keeping me occupied and being involved with people my own age makes me feel less isolated.
I do not like living in a nursing home, however I feel safe here. While I would like to have access to medication that halts progression of my disease, I do not expect to see a cure for MS in my lifetime.
If I had been diagnosed with MS today, rather than 25 years ago, with current MS treatments my life course may have been different. Maybe. For now I just hope to continue public speaking, singing and writing and I pray for a cure for future generations.