Guillain-Barré syndrome is a condition in which the immune system attacks the nerves. It may be triggered by an acute bacterial or viral infection.
“From my 20s I felt there was something wrong with me,” she said. “I was getting dizzy and my balance was not good.
“In August last year I decided to keep going back to the doctors until we got to the bottom of what was wrong with me. My right arm had started going numb.
“I thought ‘something serious is happening here’. I had experienced shooting pain down my right leg, chest pain, right-eye pain. Moving my eye could be really painful.”
She felt that at first her concerns were dismissed a little.
“But when I went back (two weeks later) because the numbness was spreading – my arm felt like a block of wood – the doctor ran heaps of blood tests and got me in for an MRI (magnetic resonance imaging scan) and lumbar puncture.
“The MRI showed I had lesions in my brain and in my spinal column, and the lumbar puncture showed I had oligoclonal banding in the cerebrospinal fluid, which is indicative of MS.
“Then I waited to hear back from the neurologist. He looked over everything and in February called me in to give me my diagnosis.”
When MS was diagnosed, her overriding emotion was relief.
“I had been feeling so unwell for so long. Because of that I have hated myself. It’s hard to explain you aren’t well when it’s a whole series of small symptoms.
“People think you are being a hypochondriac. I would spend weeks in bed at a time and I hoped I would die because I couldn’t function as a human being and felt I was just a waste of space.
“Getting diagnosed meant I didn’t have to be so hard on myself any more.
“I bought this house and I was supposed to be renovating it. My partner is working. I gave myself this year to get better. I’m hoping to do an accounting degree at the polytechnic.
“Everything I have done in my life has been physical and I can’t do that any more. I worked in horticulture and for about seven years I was bakery manager at Pak’nSave in Gisborne.”
MacFarlane says she feels better than she’s felt in a long time.
“Even though my body still won’t co-operate, I feel better mentally.
“You redefine what success looks like. Before, success was getting promotions, buying a house and paying the bills. Now, success is getting up, brushing your teeth, doing housework and cooking a meal.
“Medication helps. I am on a disease-modifying treatment called Tecfidera, in tablet form.
“People also have injections or infusions . . . anything to try to stop the disease progressing.”
MacFarlane said Mātai Medical Research Institute was planning a study of MS, and she had asked to have her name included on the list of those taking part.
MacFarlane is from Gisborne but grew up in Saudi Arabia, where her father had a job as a laboratory manager. She came back to New Zealand in 2002 and has lived in Gisborne since then.
Her experiences leading up to her MS diagnosis have convinced her that people mustn’t be shy about advocating for themselves.
“I gave up for a long time and it didn’t do me any favours,” she said.
“If you know in your heart that something is wrong, don’t give up. Hopefully you will find someone who can get to the bottom of it.
“Apparently it takes a lot longer for women to get a diagnosis. A lot of problems are put down to reproductive or hormonal ‘autumnal’ issues. My doctor is wonderful, but I have done a lot of reading and a lot of women are saying the same thing . . . that they get fobbed off quite easily.”
Important to recognise and report early signs
Members of the MS Society Gisborne/East Coast receive one-on-one support from field officer Karen Whitehead, as well as information, advocacy and social interaction.
Regular morning tea and evening group social events are held, along with Christmas and midwinter Christmas lunches.
Members can take part in an art group and a swim group (depending on the season) free of charge. They receive a quarterly magazine with recipes, up-to-date information on MS and information on upcoming events, and have access to books on MS.
Multiple sclerosis is a neurological condition affecting the central nervous system. Possible symptoms are numerous and varied, and can include fatigue, numbness or abnormal sensations (usually affecting one side of the face or body or below the waist), cognitive difficulties, incontinence, sight problems and balance issues.
Most people with MS are diagnosed aged between 20 and 50. In New Zealand, women are about three times as likely as men to get MS.
The condition isn’t directly inherited, although the incidence of it is higher among close family members of someone with MS than in the general population.
The condition is more common in countries such as New Zealand, Scotland and Canada than in tropical and sub-tropical areas.
No cure for MS is known. However, treatment can reduce the number and severity of relapses, and help delay the progression of the disease.
Field officer Karen Whitehead says life expectancy of someone with MS continues to rise and is now only five to 10 years below that of the general population.
“This could be in part due to advances in treatment, diagnosis and lifestyle choices,” she said.
“It is very important to recognise and report early signs and symptoms of MS as a timely diagnosis leads to early treatment, better symptom management, and a fuller life with MS.”
Karen Whitehead can be reached by phone (06 868-8842 or 027-568-9449) or email (msgisborne.ec@gmail.com).
