35 Letters to Live By

TRACY NEAL

Sarah Jones

Letters to Live By Living and thriving with MS

Our Letters to Live By column asks Nelsonians to pen a letter to their fellow citizens, telling their story. This month, read how Sarah Jones was diagnosed with a serious illness and how addressing her assailant head-on is helping her to win the battle.

In December 2018 my fingertips went numb. Pain in my hands increased over 10 weeks until it felt like they were being constantly crushed.

Let’s skim over a few agonising weeks and all the testing to no avail. I was in despair at continually being told a referral to a neurologist was months away. That seemed simply impossible. My GP and the doctors at Nelson Hospital’s Accident and Emergency Department were awesome - we talked over other options. We – my family, paid to see a neurologist privately, and for a raft of tests and an MRI - the cost hurt almost as much as my hands. MRI’s showed a spinal cord lesion that had doubled in size in six weeks. In hindsight, getting fast information was invaluable and almost certainly avoided further nerve damage. After a lifetime of good health, at age 49, I was diagnosed with Multiple Sclerosis. No previous signs, no family history, but there it was.

‘It is what it is’: That’s what I thought then, and is something I always come back to when the going gets rough. I didn’t cry, I didn’t get overwhelmed nor dwell on worse case scenarios. My husband and I got serious. We were methodical, making lists of what needed to be addressed in the next month, in six months, in the first year. We researched, confining ourselves to formal medical studies, ignoring the endless clickbait. As well as pharmaceuticals, we read about the benefits of fasting, meditation, exercise, supplements, herbs and cryogenics (the production and behaviour of materials at very low temperatures). I did anything that seemed worth a try. I never said anything was too tough because it wasn’t - nothing is harder than being really, really sick. My days became a mix of self-care, clean eating, cold showers, colder swims, tooth flossing, bracing walks, meditation, yoga, rest and love. I am learning how to live as well as I possibly can, something that ‘perfect health’ never taught me. This is a lifelong commitment, to choose the best organic/ regenerative/nutrient-dense food, to observe the daily disciplines for my mind and body, to live deliberately with the drive to really thrive. Disease aside, in hindsight these are no more than the choices I should have made every day of my life, and yet it is only in losing good health that I really appreciate their value and set them right at the top of my priority list. We told our teenage kids all we knew at every stage – there was no drama. I’m glad we did, and it worked for us. Soon I told our close friends and family who fortunately are the best of people. About three months later, when I was medicated enough to get out and about again, I told my wider circles via a Facebook post. I shared all my symptoms, invisible to others, on the basis that full disclosure meant nobody had to tiptoe around and we could focus on sharing more interesting news when we next met. The first thing I asked in that post was to have a good swear for me. I got so many hilarious photos and messages from around the world – man, I loved those!

I am learning how to live as well as I possibly can, something that ‘perfect health’ never taught me.

So now, a couple of years on, I’m back in the public health system which is narrow but efficient. My neurologist and MS nurse are great, and I am aggressively positive about my future. I live with some pain, but it will go. My energy levels seem to have limits, but they are improving. I’m doing more than ever for excellent health; I might even be better than ever soon!

If you have a story to share with our readers please email editor@nelsonmag.co.nz

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