I was really unwell for four or five years before my diagnosis. I had been diagnosed with lupus, another chronic illness, but that didn’t completely explain all the symptoms I was having.
My nursing colleagues, who probably see the worst of multiple sclerosis (MS) rather than all the people who are out functioning well in the community, were devastated by the diagnosis. And it was tough for my husband Eric at first, and for my three sons Jacob (30), Reuben (26) and Phineas (23).
Explaining what was happening was hard, but talking about it cleared up a lot of the fears. MS is like anything that doesn’t have a set text – you fear what you don’t know – and with neurological diseases, you do tend to think the worst. Yes, it can be extremely debilitating as some people are hit incredibly hard, but then there are others with just mild or minimal disability.
The worst part for me is the unpredictability. You might have a day where you feel great, you have no symptoms – it’s as if you don’t have an illness, then the next day you’re exhausted. My disability is limited to unsteadiness as opposed to anything else. Some days it’s great, other days I’m tripping over everything.
I follow a programme called Overcoming Multiple Sclerosis (OMS) that was developed by Professor George Jelineck, a Melbourne-based doctor who has MS himself. It’s centred around diet – a plant-based one with very low levels of saturated fats, no egg yolks and no dairy – exercise, vitamin D and stress reduction. It’s all sensible stuff and it’s not rocket science.
We had been living in a house Eric built in Wadestown for 27 years, our children had left university and we didn’t really need to be in Wellington any more, so in 2014, we moved to Carterton. The section backs onto a farm, we have a big garden and an old house that we’re doing up slowly. The original part of the house dates back to 1860.
I wanted a vintage look, so we painted it pale rose, with white windows and black detailing. It’s not bright pink but it’s pretty distinctive. The predominant house colours in Carterton are cream and green. I couldn’t be doing that!
I have a thing for roses. I’ve got a tricycle I ride pretty much every day unless it’s raining. The basket can hold four bags of groceries and is lined with a rose fabric, and my helmet, which is actually a pony club helmet, is decorated with blood-red rose decoupage.
Finding a helmet was a major dilemma – I’m all about image and I like to look as good as I can – and bike helmets are extremely ugly. I’ve also just bought a walking stick for emergencies, which is black and covered in roses, and we’ve got roses in the garden.
My book is called Something Funny Happened on the Way to the Neurologist. It’s not about MS, it’s about my MS. It started out as emails to my friends – it was a way of turning something scary into a funny situation.
Having MS, I became aware of how all the support groups and organisation – such as MS and Parkinson’s – are chronically underfunded yet our health system pretty much depends on them, so writing the book was about me helping them in my own way.
In one section, I talk about the dangers of the irrigation ditches alongside our rural roads. I do a lot of walking and most of the time I walk alongside them with no problems, but every now and then, I just veer off and fall into them for no reason. It always happens when a car is passing. I’ve spent a lot of time trying to work out how to get out of those ditches in a dignified way, looking like I fully intended to go in the ditch in the first place!
There’s also reference to a request for a low-fat marijuana cookie recipe in the book. Now there’s no way I would break the law, and I also have adequate pain relief, but I would never judge someone who could only get relief that way.
Because of the funding criteria in New Zealand, I don’t qualify for treatment, plus when my condition has been exacerbated, it’s not just because of the MS but the lupus as well, so I don’t score high enough. I could go overseas for treatment, yes, but I’m not bitter about it, my issue is more that patients here don’t have the choice.
I went on an MS retreat last year. One of the exercises was thinking about the benefits of the illness. I realised then there had been heaps of good things that had happened since my diagnosis, more so than downsides. If I hadn’t been ill, our whole focus on life would have been different. We live a much better life now, a good life if you like.”
The best invention ever would have to be… The hot-glue gun. I love to decorate and do a lot of craft for the house. My hot-glue gun is my most used tool.
My favourite smell… Flowering Daphne.
If I had my 15 minutes of fame… I’d want to get across the message that in New Zealand, we relegate people with chronic illness to a life of poverty unless they have independent financial means.
As told to: Julie Jacobsen
